Our Paths to Gluten Free-dom

[aklap]

Our Paths to Gluten Free-dom

I have been meaning to do this for awhile. I am ""stealing" this idea from another board.

One of the things that helped me a great deal in figuring out why I was sick...was reading other people's stories. Time and time again I'd see people that had the same problems as me. That got me to thinking..."Hey, maybe I need to try this gluten free diet!"

So, if you feel like it, please share your story with us! It doesn't have to be anything fancy - even a paragraph is fine! It just might help someone

I'd like to keep this an informational thread (stories only)...so if you have any questions or discussions, please create a new Topic or add to the Comments: Our Path to GF-dom thread. Thanks!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

Official Diagnosis: Idiopathic Sensorimotor Neuropathy, Chronic Reflux, High Blood Presure, Diverticulosis
Self Diagnosis: Gluten Intolerance
Manifestations: Gastrointestinal and Neurological
Gluten free since: Sometime in May 2003
Other intolerance’s: possibly dairy

My journey to Gluten Free land has been a pretty smooth road compared to most of you. I do feel lucky. My heart goes out to each of you that has suffered the trials & tribulations far longer and much worse than I have up to this point.

Oct 2001 - After a round of Prednisone & Vioxx to clear up a gout attack, I was having trouble with major reflux, excessive gas & abdominal pains. For a few years previous, I had been experiencing minor reflux and excessive belching on and off - usually connected to food I've eaten - those belonging to the greasy & spicy food groups - some of my favorites!!!

November 2001 - I had had enough and went to the doctor. It was dx'ed as Gastritis secondary to the Prednisone & Vioxx and given samples of Nexium for 1 week and then placed on Prevacid. The Nexium helped almost immediately! But after awhile...I started have problems again. I was having problems w/ nausea, flushing - at the time I was blaming the Prevacid. Started doing research on my own as to my gastro problems. Found Gastro board at www.medhelp.org

December 2001 - Still having gas & abdominal pains. Blood tests, ultrasound & Upper GI series were done. Blood tests were all within limits. Ultrasound conclusion: fatty infiltration of the liver. Upper GI conclusion: Reflux, distal esophagitis, duodenitis. Started a food journal

June 2002 - Registered on MGH PN board ( now www.Braintalk.org ) in effort to find out nature of my numbness & tingling. Stumbled across posts by JCC (Cara) about gluten related PN and other symptoms. She emailed several articles to me. Thanks Cara, you GF Goddess you!!!

October 2002 - Still having gastro problems. Have lost 28 lbs at this point. Numbness & tingling in feet & hands now becoming worse. Visited PCP he did basic sensory, reflex & position tests. He suspected PN and scheduled an EMG. After much begging, B12 & serum folate blood tests were done by PCP. Blood test were within limits. End of Oct I was feeling overall quite ill (chills yet flushed, nausea, shaky, lightheaded). Extremities are hot & tingly. Concentration & focus are foggy and difficult, lightheaded. I can remember laying on the living room floor, covered up, shivering, feeling very ill wondering what was wrong - expecting to die...after eating a can of clam chowder and a pile of soda crackers. It was a very scary experience!! A comprehensive metabolic panel was done. All within limits except Amylase (a pancreatic function) was high normal. Chest Xray - no abnormality found. Finally got referred to Gastro Doc after an angry visit to PCP. Took food journal to Gastro Doc. He briefly looked at it and dismissed it.

November 2002 - Still losing weight. Had EMG performed. Found mild to moderately severe sensorimotor polyneuropathy. EGD & Colonoscopy performed. Colo was done only due to my request. As requested a couple of biopsies were done for celiac. Villi was normal. EGD conclusion: Mild chronic inflammation. Colonoscopy conclusion: Found and removed 25 cm polyp - benign. Still doing research on my own and seriously starting to consider a gluten free trial.

December 2002 - I've had it!! I've had enough of feeling like $h^t!!! I decided to start a gluten free diet. I decided that it would be best for me to start reducing all the big offenders first - bread, pizza, crackers, cookies, etc. If I felt improvement, I'd continue working my way down the list. On the neurological front - I had been through all the usual blood tests to determine the cause of my PN. They were all negative - imagine that!! So I thought that going GF might also help with the PN. Still losing weight

January 2003 through April 2003 - During this time I went back & forth between eating gluten and not eating gluten. Was it all in my head or was it really a problem? After getting to a point where I was feeling pretty good - I'd eat small amount of gluten and monitor myself to see how I felt. The amount of gluten I was consuming did not bother me...so I thought "Ah Haaa - it is all in my head!" and that I'd try eating enough gluten to do a gluten challenge. If I remember correctly I had to consume about 30g of gluten (1 bagel) for about 5 weeks. Well, I lasted about 5 days before I started having problems again. Needless to say, I called off the gluten challenge.

May 2003 to March 2004 - I decided to continue on the gluten free path. With continued research, I was slowing weeding out all forms of gluten. Making mistakes along the way. Buying food, thinking it was safe...double checking it and then giving to the food pantry. This was driving my wife nuts. I don't know who this diet is harder on, me or her having to deal with my issues. Eating a certain food thinking it was GF when in reality it wasn’t (For those of you at home...repeat after me "Twizzler's are not GF"). Stomach pains have vanished, no burping or expelling gas by any other means, no heartburn. I have not been back to the doctor with those type of stomach issues or abdominal pains since. I was dx'ed in Nov 2003 with diverticulosis (pockets in my colon where "stuff" can get caught). This landed me in the hospital for 1.5 days with a major infection. My neuro problems - that's another story...My neuro symptoms seemed to decrease or almost disappear for a number of months. As of Nov 2003, I felt that my symptoms have been spreading to unaffected parts of my body & worsening. I'm beginning accept the fact that stress is magnifying my symptoms. It's not that I don't know that stress is a factor..because I do - I'm just starting to accept & acknowledge it. This is difficult for me. I will be making a concerted effort to deal with my stress levels. My weight loss has stabilized at this point...having lost 40+ lbs.

2004 and beyond - This is a work in progress. I have not had a chance to update it yet.

Commentary:
This has been a very interesting journey to say the least. Would I have chosen it? No. Do I like it? No. But since I can not do a lot about it, I try to make the best of it. As strange as this sounds, I have found many positive things. I had to look for them, but they are there. As long as I celebrate & embrace the positives - I'll be alright! We all will.

I would recommend keeping a food journal for anyone who is just starting out on their GF journey. I also had a rating system as to how I felt overall (10 normal - 0 half past dead). Luckily I didn't have too many Zero's. I felt it would help chart my progress/decline. Before this I was not a sick person. I rarely went to the doctor - once a year to get my BP meds renewed and that was about it. One of the things that I learned through this is that the medical institutions definitely do not have all the answers. At least for people like us that maybe fall "outside of the box". I don't blame them for not having the answers, I do blame them for A) Being closed minded about other possibilities. B) The seeming lack of interest to find out about it. Actually I felt very alone and helpless - no one had any answers, no one could offer any real help. Except those of you on this board and the others like it!! I suspect that'd I'd still be suffering if it weren't for all the kind and good hearted people that frequent these places. So...to all you out there I offer my utmost thanks & gratitude for making my life better again!!! I try to give back what I have received, but sometimes all I can offer is maybe a smile, a chuckle, or hopefully a pants wetting laugh!!

God bless & Good Luck
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Lizard]

Greetings all.

First of all, Al, thank you for all the informative posts ... I've been reading with interest, and confirming what I feel I already know.

Sorry this got to be so long ... my grandkids love my long stories, but i know adults have a shorter attention span Smile

I am new to this BB, and just want to share my experience in the past ... year or so, mainly the past 3 months.

I'll be 50 in 7 months, I guess this is what they call midlife crisis Razz

About a year ago, I had to take penicillin for something and broke out in sweats and a horrible rash that itched like I was laying on an ant pile.
Needless to say, I deducted I had a penicillin allergy.... I stopped taking it, and got better on my own.

3 months ago, I was put on Lopid for extremely high triglycerides. Within a day I broke out in a rash that looked like ringworm, except that it was symmetrical in appearance... on both sides of the neck, on both sides of the rib cage, and in both arm pits. I stopped taking the Lopid, the rash halted, but would not heal. Doc prescribed ringworm cream and I applied it liberally - to no avail. Since the rash appeared within less than a day after taking Lopid, he said he did not think the rash was related to it.... (?)

Two weeks later we went on vacation in the southwest, it was hotter than Hades, and all I ate was fruits, joghurt, salads - and my rash healed a lot.

Came back home, ten days later, almost healed, ate a tuna sandwich and within 1/2 a day had "ringworm" all over my belly, armpits, neck and forehead - symmetrically.

I am smart when the brain fog lifts, and started testing myself. First I ate tuna - no reaction, then I ate toast, and BOY the ant pile feeling was back, and the rash spread to my shins and knee bends....

AHA! Wheat allergy - I thought... so I cut out all wheat, and the next morning ate a bowl of joghurt, sprinkled with oatmeal and mixed nuts...

YOW! ... the "ants" turned into fire ants and "mosquito bites," I was itching so bad, I started crying, tears just rolling down my cheek.... Grain allergy??

Then, I turned to the internet.... looked up rashes - found my "ringworm" as some derma-something, and found the word Celiac ... so I looked it up and VOILA! ... a whole picture of mysterious symptoms all of a sudden layed out and fitting like pieces of a puzzle:
Fatigue, irritability, (very mild) depression, rheumatoid arthritis, migraines, brain fog, rash, nausea, diarrhea, constipation, bone aches (that's another story!), cramps, cold intolerance, tingling, muscle spasms and a whole other gamut of symptoms.

I cut out everything that was grain related .. but did not realize that food coloring, and MSG and other little food helpers were also poison. So I went to eat a chicken salad at a fast food chain that shows two arches Shocked and instead of grilled chicken they gave me breaded chicken... I took off the breading, which left me with hardly any chicken, and applied the Newman's ranch dressing.

THAT IS A NO NO! I itched so bad, I broke out in my rash, got light headed, felt nauseated, got stomach cramps ... so I took an over the counter antihystamine (storebrand, nothing fancy - i am cheap!) for the itching and I wanted to crawl into a hole and disappear... the antihystamine contained YEAST, i was in tears again, and the rash spread all the way to my back - like chicken pox - ITCHY!

Short story long .. I can't take most vitamines, nor pills, have to eat fresh food only that *I* prepare, and have lost 20 lbs in 2 months. Laughing
My brain is less foggy, I have instant symptoms after eating remotely gluten-containing substances, and the weight keeps coming off at a pound every two to three days.... THAT is ideal!! Smile

Now I am starting to miss a slice of toast with "I can't believe it's not butter" and jelly, so I spoon a bit of butter and jelly, and eat it without the toast Smile

I am still trying to figure out a lot, and will get allergy tested next month, because my doc thinks it's "only" an allergy ...
I really don't care if I am labelled to have CD or not ... I will eat gluten free probably for the rest of my life and be fine with it.

Now I just have to learn more...

Oh, and my cholesterol and triglycerides dropped by 1/2 within 3 months also!!! Naturally back to normal.
_________________
"The woods are lovely, dark and deep. But I have promises to keep, and miles to go before I sleep." Robert Frost

[Lizard]

Just read your journey, Al ... WOW , what similarities ... the upset stomach and belching and stomach aches fortunately led to discovery of a very bad gallbladder that was removed ... but it still continued...

What is wrong with the medical profession? Fortunately I have an old fashioned doctor, who listens to me, and takes my guesses semi-seriously! Wow! I'll miss him dearly when he retires end of next month. But he is speeding up tests so he can still get a basic idea about my ailments before he goes off camping in every camp ground in America.
_________________
"The woods are lovely, dark and deep. But I have promises to keep, and miles to go before I sleep." Robert Frost

[Padams]

Warning, I am 19 years old and suffer from a short attention span; hopefully my story doesn't hail the same fate. Please understand.

My troubles started when I was attending Northbridge Middle School in Northbridge, Massachusetts. I was in the seventh grade. It was, roughly, fourth quarter when my stomach started to irritate me to no end. I used to bathroom about 40 times a day. It finally came to the point where the teaching staff no longer needed an excuse for my leaving the classroom. When I got up, they knew exactly where I was going.

My mom noticed that I was going to the bathroom much more than normal and that I was losing some weight. She made an appointment with my general physician. I was diagnosed as suffering with a virus. I was told that it would work its way out of my system in a matte of weeks. Fine. If that is the conclusion my general physician reached, we had no choice but to believe him. It made sense.

Well, after one month of nonstop pooping and the like, I went back to my general physician. This time, I developed bleeding while urination and horrible pain in my bladder and kidneys. My general physician said that I was more likely than not suffering from kidney stones. He sent me to the radiologist and had X-rays taken. He was sure that I had kidney stones, even though they were not visible. Fine. He knows what he is talking about.

After two years of bleeding and the like, my mom (time after time) talks to my general physician. He finally decides that I need to see a specialist, a urologist. Good, maybe something will be accomplished. Horrible test after horrible test, my urologist (after nearly 4 years) came to the concluson that I had a blockage in my urethra and some torn arteries in my bladder and kidneys. This, however, did not explain my stomach. By this time, my general physician committed suicide. Great.

My mom now has to find a new general physician and talk with my urologist about what options I can take. We found a new general physician, 2 weeks before we moved back to Nebraska, so he wasn't important. My urologist said that I could either have a tube put into my urethra and widen the opening or surgery. I tried the tube, ouch, and it did nothing. So, surgery it was! I had surgery one year ago July, well, yesterday, and my bleeding has stopped. Thank you, thank you.

Again, this doesn't explain my stomach issue. Hello? Medical staff? Have you not been listening to me? Stomach. In stress. Needs help. ASAP. Well, after my diagnosis of CD, I was told that I had suffered from severe internal infections for nearly 5 years, which more likely than not, lead to my development of CD.

Great. So, an infection -- which should've been cured -- lead to me getting some disease I've never heard about. Hmph. Well, isn't that a kick in the shin?

So, I have CD due to my incompetent medical staff back in Massachusetts. A word of the wise: never get sick in Massachusetts.

El fin.

PS -- I am sorry for any typos of confusion. I am not well. Rememer? CD? It like .. makes your fingers miss the keyboard and your mind all jumbled. Right. Always blame the CD.
_________________
Patrick
06/14/05
I love Danna Korn

[Judy]

I'm telling my husband's story....

Its not a long involved story as there wasn't much information about celiac 24 years ago. His problem manifested itself in small water filled blisters on his elbows, knees and butt. He was miserably itchy and thought he had poison ivy as he'd been out in the country bike riding all spring and summer and figured he'd sat in some on a stone wall. By the middle of November it hadn't gone away. Around that time we noticed that he was belching like crazy, something he'd never done. Of course, we didn't put two and two together - how could they be related? His primary care doctor sent him to an Infectious Disease doctor (for real!) who though he had developed a staff infection. The day before Thanksgiving that year our daughters and myself had to be tested for staff. They thought perhaps we were carriers and had given it to him. Its not a pleasant test - they jam a hugely long cue-tip up your nose nearly to your brain to do a swabbing. Test - negative. In the meantime, the blisters were worsening as was the belching. The Infectious Disease doctor finally sent him to the head of Dermatology at University of Massachusetts hospital and we finally had a diagnosis. Dermatitis Herpetaformis. He was given a handout sheet that told him to avoid wheat. The end. Of course, it was not the end of his misery - it took us a long time to find any help and in the beginning the help was only a Celiac newsletter- no support groups, no internet, no specialty foods. The newsletter was a wealth of information to me as I'm the cook in family and responsible for everything he eats. Its been years of trial and error, thinking I was doing right only to have him get sick. Over the years his symptoms have worsened and he's spent months on end sick to his stomach with all the celiac symptoms you all know. Its only in the past 2 years we've found an actual CELIAC gastro doctor (IN MASSACHUSETTS PADAMS!!) that has been such a help to us. As of this writing, he is doing well. His DH is under control with the help of diet, medications and cream, he's also diabetic, diary intolerant (which nearly killed him) and with the both of us finally getting a total handle on all of this, I think he's feeling well.
_________________
Judy

[cruelshoes]

Memories of August 2005

For 8 months I had been going from doctor to doctor begging them to help me. After limping along for the last 16 years since going in to remission from cancer, all my strategies for keeping the “D” somewhat under control (ie. less than 10 times a day) were no longer working. Prescriptions were written, and follow up appointments were scheduled. They all supposed that my insides were just too damaged from the radiation treatments as a teenager for my cancer. Sometimes things just go down hill, they offered. Here’s another referral to someone who might have some ideas. I had ostoporosis, life threatening levels of iron-deficiency anemia, no energy and all my hair was falling out. My legs were so swollen from water retention that fluid leaked out of the backs of my ankles, and I had to wear compression stockings like an old lady. It was a contest to see if I could make it through the work day without passing out.Going to the bathroom 30 (some days 50) times a day really takes a lot out of a girl. I cried for hours every day because it felt like my insides were filled with cement and broken glass.

I had been out of the hospital for about a week, after a one week stay. The doctor on call at the hospital had told me that if things had carried on for another week or two, I would have died. They tested me for everything under the sun. The medications I was taking were: Lasix (water retention), Fosamax (Osteoporosis), Micalcin (Osteoporosis), Camphorated Tincure of Opium (an old school treatment for “D”) and prescription strength immodium (A new school treatment for “D”). 12 hours a day, I received IV nutrition through a catheter in my left arm. This could be continued indefinitely as an outpatient unless and until they figured out a solution.

A GI doctor appointment on an August afternoon changed my life. The Doctor positively bounded into the room. The endoscopic biopsies in the hospital had shown total villous atrophy. “We found the answer! You have celiac disease!” After a 3 second pause, I said “No I don’t. Find something else.” We had a family friend with celiac, so I had heard of it, and it sounded royally awful. 30 minutes of “Yes you do”, “No I don’t” later, I agreed to try a GF diet for 2 weeks, until my next appointment. He would also have bloodwork drawn to verify the diagnosis (normally it is the other way around, but I have never been a conformist.) I was going to show this ba$tard that this couldn’t be it. I’ll go 100% GF and not improve. That will fix his little red wagon. After sobbing all the way home (good thing my husband was driving ) I proceeded to eat an entire loaf of French bread. One full pound of gluten bread. I have never intentionally eaten gluten since that day.

The first and second GF days were the same – no improvement. On the third day, life started to change. The “D” was slowing down. I had to taper back my medications. Things improved steadily until after 3 months it was totally gone. My first solid BM in 16 years was a bit of a religious experience. One month after starting the IV nutrition, I was able to discontinue it. At my follow up appointment, I hugged my doctor, thanking him for finding out how to give me my life back. My bloodwork was overwhelmingly positive. We found the answer.

GF cooking was rocky at first, but, over time, I get better and better at it. Shopping that originally seemed an insurmountable task can now be handled in not much more time than it used to take me. We eat better that we ever did pre-DX and I can look forward to having a life and a garden and a career and grandkids. Life is beautiful.

If you are newly diagnosed, it may seem like your life is over. I assure you it is not. Being diagnosed with celiac is one of the best things that has ever happened to me. It has not always been easy. The learning curve is steep, and planning becomes a part of every day life. But the rewards far outweigh the daily hassles.

Updated from my original post. I am a lot wordier after 3 years GF.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[Deb]

Well--Al, here's my story as I put it in BT a ong time ago. Hope it isnt too long and boring!
Morning---well, here goes---I have always had tummy troubles--as a child I would get carsick--my mom always said that I had to have a change of clothes with me when traveling--my sister is celiac too and I remember as a child, she would eat dirt--my mom finally took her to the doctor to find out why and, of course, it was a vitamin deficiency--she was given a liquid to drink everyday that we lovingly called "bug juice"--hehe, she hated it--I now wonder if I was a very hyper child too--my mom told me how naughty I was as a child after I had kids of my own--I have a grandson who is very hyper--I love him with all my heart, but 2 hours is enough and I wonder if Colin is like I was--my mom has so many issues with me and I now feel it may have all started then--at any rate--my real symptoms started when I was pregnant with my 2nd child--I have 5 children and was sick with the last 4--each time getting worse--the last 2 I was sick all the time, I couldn’t even sit in a rocking chair--I eventually had panic attacks, agoraphobia, and anticipatory anxiety--that was when I started on Xanax, which kept me down pretty much--I was dizzy all the time I had been to an internal specialist, who of course told me it was all stress related, spastic colon, irritable bowel syndrome--I was raising 5 kids pretty much alone--my husband was never there and not a good father--I took pills that would allow me to do things, then was sick for days because of the pills--constant battle with myself--I was finally given Paxil which did keep me more on an even keel, but I still had panic and diarrhea nearly every night, sometimes all day--I was miserable, I was having terrible joint pain, headaches daily--most of you probably know just what I mean--there were nights I fell asleep on the toilet, my legs would go numb and never an answer--my sister is a dietician and stumbled on celiac disease and convinced her doctor to test her--he said he knew that wasn’t her problem and believe it, he was shocked when he found she was correct--at the time, I was newly divorced and had no insurance--my sister convinced me to go gf and it saved my life--I have no doctor diagnosis and i don’t need it--I know I am celiac--after 3 months gf, I weaned myself off of paxil--at this point in time i was taking 40mg daily and was still having trouble coping (pre gf)---there were days I was begged to please take my medicine---doctors tell you that paxil is non addicting, but they are wrong--you need it--there are still times I want it and I talk to myself----I always felt that my panic was a chemical imbalance and I was right--if more doctors would listen to us and not ignore what we say is going on, wouldn’t that be wonderful--my sister is a diagnosed celiac and now at 69 my father is too--so, the odds are against me---now if only I could get my kids to listen to me--I do feel that at least 2 if not 3 of them are celiac too, but until they are ready to change, it wont happen--I guess they don’t feel sick enough yet--I try using the cancer scare on them, but they are young and feel they will live forever--I hope I am wrong--I hope none of them have this------I am gf now for over 4 years (July 2001)--I never cheat, never have since the first day--I have been accidentally glutened, of course and now I find I am soy and corn limited too--but life is good--I very rarely panic and when I do it's because I am very stressed and I don’t take anything for it--I had trouble driving 25 miles to work before gf and now--I moved 800 miles from Michigan to Long Island and I have never been happier in my life--I live close to the ocean and I found the best job I have ever had --I miss my kids and grandbabies--I have felt so much better here--the stress is gone from my life, now I am forcing my kids to grow up----besides that--I have these forums and have met so many wonderful friends through here---thank you all--------deb--I do trust in my angels
__________________

Always trust in your angels!!!!!

[isto]

I was sick for 18 years before I finally realized what was going on. I never connected all my different symptoms - severe chronic dysentery, reflux, irritability, lassitude, miscarriages, depression (an attempted suicide and a long stay in a private mental hospital), nausea, inability to concentrate which brought on memory problems (still dealing with that one!), bloating, iron deficiancy, follicular hyperkeratosis, night blindness, the list goes on... It was worse and worse with each pregnancy. I made emergency room visits with 3 of my 5 pregnancies because my vomiting and dysentery were so bad! The anemia was worse, also.

I had been through all kinds of testing. My general surgeaon took out an infected gallbladder two years ago and told me the dysentery would go away. It didn't. He kept up the testing and could find nothing. He sent me to the area's 'best' GI dr. The GI did some tests and decided to try me on Welchol because it would probably control the dysentery. It did - sometimes. So he was happy with that and would not do anymore testing. My husband and I figured he's the dr. - he knows best, so we didn't push for anymore tests.

During the 5th pregnancy I was really sick, but also had symptoms I did not associate with the dysentery. After our son was born in April of this year, a customer came into our shop and said she was praying and God told her to tell me about her gluten intolerance. She did not know about my illness, so I was quite surprised! When she left, I wished it would be as easy for me to figure out MY problem!!! Whenever I prayed for the answer to my illness, her words would keep coming back to me! I finally told my husband I thought maybe I had a wheat problem. He encouraged me to stop eating whatever I thought was making me ill. I started getting books and reading about gluten intolerance and celiac disease. I could list a whole long list of family members who had CD symptoms including DH. I could also list a whole list of members who had bad things like diabetes, stomach/bowel/colon illnesses and cancer, etc...

I went GF to see if anything would change and I began to feel better. My husband said for the first time we could go DO things and not have to have bathrooms nearby! It was incredible! I went back to my GI recently to tell him about my findings and he just humored me and in a very superior way told me he already tested me for CD. I asked to see the tests and he had done ONE biopsy of my duodenum. How conclusive! He said just to PROVE I didn't have it, he would write an order for the blood test and the next time I was having blood drawn, I could get the CD blood work done as well. I told him I had been GF for too long and he said he didn't think it would matter!!!

Soon after, my daughter and one of my sons were complaining of constant stomach upset and dysentery. They are GF now, also, and I am in the process of making our home totally GF. My husband says that it doesn't matter if dr's tell me its all in my head. He sees a HUGE difference in my health and general demeanor. He told me recently that anyone who says CD is all in my head needs a reality check. When I asked him what he meant, he said I should eat gluten, go to that person's house, use their toilet and DON'T FLUSH! Yucky, but it would probably make them be quiet!

Being GF has made a wonderful difference in my life AND my family's life, as well! I'm so glad to feel healthy!! I give all the glory to my LORD, who had to hit me over the head to get me to listen to HIM!!!

Danita

[Guest (Professor)]

Well, here's another one . . . (and no, the professor is NOT going to proof something this long -- I have STACKS of papers to grade still! So, no making fun of my typing!)

I'm almost 50 now -- diagnosed about 20 years ago. Off and on I had intestinal symptoms, but not as severe as some folks. I was very thin through my twenties (until diagnosis), and smaller than most of the other kids when I was growing up, and had stomach aches far too often, but otherwise, apparently not enough to cause my mom to take me to a doctor. Later, I had other manifestations though: infertility, then when I finally did get pregnant, miscarriages (4 in all). I finally had a daughter, and yes, before diagnosis, but the story, looking back, should have been an "aha" moment (but of course I didn't have a clue what celiac was at that point). Anyway, I was on a health kick -- cut out literally all processed foods, ate only whole foods, so since that I didn't buy whole oats or wheat to grind up and make bread or cereal from, all gluten was essentially out of my diet, so that's when I finally got pregnant and carried to term, without a hitch.

Anyway, by my late 20's, I had more and more problems, including DH, so my doc finally did the tests and found the CD. I started the diet immediately, and did well with it -- but still can't do dairy (I had hoped I might be able to get that back after some healing -- guess there was too much damage).

Once in a while I goof up and eat something bad (missing the gluten when reading the label), but usually I'm careful. And occaasionally, believe it or not, I just buy something without reading a label, start eating it, and then sort of wake up and realize I have CD and need to read the label! It's like I feel so good that I just forget! Too funny, sort of -- it's like it's the farthest thing from my mind, and so I just forget to read a label. I did this just last week -- bought a couple jars of pickles, and started eating them, not giving a bit of consideration to what was in them! IDIOT! Fortunately, they were GF.

I have a GF home, and usually make all my foods from scratch (whole foods), and do a bit of organic gardening, but occasionally, I like a frozen meal -- I go for Amy's -- they're great. I emailed them from their website, and they sent me three coupons for any items, FREE (of course I chose the family sized meals! Thanks, Amy's!). They have a chart that they sent, telling which items are GF. I like their veg and black bean enchiladas, and their tamale pie, oh, and the shepherd's pie is good too.

OK, ask if questions -- that's my story and I'm sticking with it!

Lexi

[duchessisa]

my daughter Juleah's story (kind of my own too)
Juleah was breastfed for only about three months. As I lost my milk, she went on formula and cereal. At about 3 1/2 mo. she had a bloody stool. I was a new mom and panicked. Doctor decided she had a fischer tear on her rectum and a case of thrush. No big deal. A month later the blood was a bad urinary infection but test showed no infection at all, thrush still present as well as yeast. Dismissed. I took her to the doctor sometimes twice a week. She cried so often and threw up on occassion, her little backside was raw, cracked, the yeast infection would only clear for a few days before it came back. Niastatin, the ussual medicine burned juleah like liquid fire, peeling her skin in huge blisters. We had to use a much weaker cream. I changed insurance and therefore doctors at age 6 months, right after Juleah was dx with mono. I spent the next year trying cut the sugar in her diet, then the lactose. Spending huge amounts on specialty formulas and wracking my brain while I rocked an inconsolable baby from 10pm to 3 am. I was pregnant the month after Juleahs 1st birthday. At nine weeks I began bleeding and was absorbed in my health and the health of our unborn baby untill she was born three months premature and died shortly after birth. I was a wreck and unable to see much that was going on around me. Juleah seemed stable, not well but in a holding pattern. She also had potty trained by 18 months. A God send! Less rashes. When I got pregnant a year later I turned inside with worry. I took Juleah to the doctor a few times that year for sever illness, vomiting, high fever, listness, you name it. Broncitis and pnemonia. Repeatedly. I always raised the issue of her having diarrhea. When I was becoming appaerantly pregnant, Juleah began holding her left ribs, walking hunched. She was 2 1/2. She ate small bits often. My sister used to tell me she MUST be ADD ( attention deficit disorder) because she was "so freakin' spacey" I was offended. The doctor said Juleah was jealous of the coming baby. Even after I told her we hadn't explained my tummy growing out of fear of loosing this baby also. After Miranda was born Juleah began verbally complaining of pain. I really began to worry because I knew it had been at least six months of the same pain. A year of back and forth with a pediatrician who got angry with me. Blood test showed Juleah was anemic and vitamin defiecient. AN upper GI showed nothing and an xray showed nothing. Dr. told me to get her a good vitamin. She was sure it was an attention getter.
On a long drive home, just Juleah and I, Juleah fell asleep and woke screaming in pain. I took the quickest route to the emergency room. I was sure she had cancer or a failing organ. I was certain she was really in trouble and no one would listen to me. The ER doc was no better."Must be a bladder infection." But he did say ,"do you have insurance for a specialist?" I knew then, I was going into the pediatrician and demanding one. This was Sunday. Monday I was in the office waiting to be seen with new determination and absolute resolve. In a heated and slightly loud debate I finally said, "My daughter is ill and if you can't figure out why send me to someone who can!" The DR glared at me while asking increduously," Do you want another doctor or what?" I said," I want a specialist!" "done!" and she walked out. I had the pleasure of informing her all about CD (repeatedly) over the next few years. Ten minutes in the office of our pediatric GI Dr and he said it could be many things but it sounds like celiac sprue. A few days later he called to say blood test were positive and a biopsy would come next. Juleah had just seen her 4th birthday. I cried tears of joy and anger. I spent the next year relearning to cook and reading labels. I brought my cell phone to the grocery store and dialed the 800 numbers on tons of foods. Juleah became a different child. She was no longer spacey. The dark circles under her eyes vanished. She was more active and happy.
A year of excellent health went by when I began to wonder if I had contaminated her. I read more, went to support groups, went to the Stanford Celiac convention. Juleah slowly slid backward. New Gi doctor wanted to biopsy her again. No damage to her villi but obvious hiatel hernia found. Juleah had to endure the worst pH probe EVER, two broke in her esophagous befor they determined it was a bad batch and used a different style. Still a terrible experience! It proved she also suffers from GERD (reflux disease). The medication for this is not made in 6 yr old doses. She was over medicated and in a terrible way. She missed more school than she attended. I had to get her work modified and have the school help me to motivate her to go for at least an hour a day. It was a flawed plan but we tried. Juleah was still very ill and getting worse. I spent many a night praying, begging for answers. Her Gi doc was getting frustrated with my calls and his inabilty to medicate her properly. One afternoon I got his nurse on the phone and explained juleah's history and current problems. She asked if Juleah had been tested for lactose intol. Nope. A week later Juleah was tested. It was supposed to be a three hour test..40 minutes into it they said go home, no dairy. You should not have a change in gas levels (in your breath) of more than 13 over three hours. Juleah had reached 147 in 40 min. I took away the dairy and the gerd meds. Juleah ended the school year top of her class. the following year she was honor roll with only 5 missed days. This year she has perfect attendance and a 4.0 She has bad days but NOTHING like before. She takes zantac as needed and lacaid on special occassion.I am the 4-H cooking leader (10 kids in my class)and we bake Gluten free.

[Noatak]

OMG, Padams! I live in Massachusetts and know your pain! Your words regarding medical care here are sadly true which is ironic as Massachusetts has some of the best medical schools in the country. However, they are filled with doctors in training who can be arrogant and so full of themselves that they rarely take the time to LISTEN to what a patient has to say.

My PC was absolutely useless in finding out what the problem could be with me. I literally gave up going and set to finding the problem myself. After hearing some of my symptoms were "in my head" which is the medical term for "we can't figure it out", I turned my back on these people and did it myself.

I never was horribly sick from Celiac's but had secondary symptoms such as unexplained anemia and low body weight. In fact, more than a few people rudely remarked that I MUST have had an eating disorder because of my weight. Just the opposite though....I could eat large quantities of food without putting on weight.....explains the malabsorption! I did have some gastric distress over the years that was investigated but not helped.
Doctors just always want to put you on medication and I refused as that didn't tell me what was wrong, just masked the symptoms.

Then in January of 2005 I got very sick with what I thought was an upper respiratory virus. Went to my holistic doctor and she diagnosed a virus and gave me some meds to alleviate some of my discomfort and I was a week out of work recovering from that. Turns out I was about to hit the wall with Celiac's and I was horribly run down. I did have symptoms of Celiac's at this point but attributed it to being sick with the other. Then in April, I got sick again with all the classic, gastric symptoms of Celiac's after pigging out on some hot cross buns (it was Easter, after all)! After 4 days and not getting any better, I went off to the PC again to ask for tests, thinking I may have food poisening. She was not much help but did agree to refer me to a GI doctor, as I think she was sick of seeing me and wanted to hand the problem off. I went home frustrated as hell and decided to do some reading on things other than the usual gastric problems and start a food diary. Well....I started reading about Celiac's, which I knew a little about, and was floored when I learned I had every single one of the symptoms and the low body weight thing. I'm 5'3" tall and never got over 105 lbs. I immediately stopped eating gluten containing products so see if this was an answer for me. I was desperate.
Within 4 days, most of my symptoms had disappeared entirely and with each passing day, GF, I felt much better. Not only that, but many other unexplained symptoms I suffered with over the years disappeared also. Went back to my holistic doctor and asked her to do the bloodwork. I ate a little gluten beforehand and when the results came back, it tested very postive for Celiac's. So, I didn't even have to go to a GI person or have the endoscopy done as the bloodwork and diet have proven to me I have it. Since April, I have gained 4 pounds so know my innards are healing.
What relief! I don't even mind the GF thing as I finally know I was right and it wasn't all in my head. My tummy feels so good now....it's a beautiful thing!

Doctor's need to test for Celaic's FIRST if a person presents with gastric troubles and I don't mean an endoscopy either. You don't need to put yourself through that to know as the bloodwork and/or genetic testing will give you all the answers you need.

[jim]

hello,

My name is Jim I have had type 1 diabetes since I was 9 years old. I am 40 years old now. At around me being 38 my wife and I desided to have kids. I now have a 2.5 year old and a 7-8 months old. I started feeling very tired working shift work and getting up with babies the last two years with my wife. I figured thats just the way it is with kids. I also started on an insulin pump just prior to having my first child for tighter dibetes control.

Anyway, about Augest 8th of 2004 I got bad stomach pains and made it through a ten hour shift at work. The next day I tried to go to work, but came home with stomach pain diarra, and vommiting. I also had chills and then hot flashes and back and fourth. I couldn't get my blood suger below 200 even though I wasn't eating anything. I finally went to the walk in clinic and they ran an MRI on me and gave me fluids which brought my blood sugers down to the normal target of 100. The MRI cost me 600-800 dollars and showed nothing. I asked the doctor if the pump could be causing my stomach pain and he said no. He gave me some pricey pills for anti-nausa and I suffered through a few more days before it went away. The next year almost to the day I had stomach pains for a few days-no vomitting this time. No hospital either I figured it would pass and they found nothing the 1st time. I mentioned it to my diabetic RN and she says I likely had a virus, but to mention it to my doc.

I run my usual Grandmas 1/2 marathon. Not really a runner just do it to have something to train for to stay healthier. I felt run down in the training and figure I'm getting old maybe I'll hang up the running. My weight is 210 pounds and 5'8'' inches tall. More of a Clidsdale then a runner. I hardly train but run the 2005 1/2 marathon anyway. I thank the ipod for getting me through that one and not half to here me breath as I do it. Mind over matter. I run some after race, but getting weaker and too tired to do it.

November 2005 comes and I see my doctor for my yearly visit. I see a diabetic nurse for the other quarterly visits blood work. At this point I'm always tired weak feeling general overall not well. Some stomach bloating. Occasional diarra, but mostly smelly floating stools that don't go down on the first flush(I had this as long as I can remember, but just thought it was the way it is with my family. Also prior to this visit I throw up Dominos pizza twice in two weeks. feeling fine until that point. I tell my wife Dominos pizza sucks -Sorry Dominos. I also have swelling off and on in both ankles and broken blood vessels in shins-which was originally dianosed as a rare vericose vein thing. This left a tatto effect on both shins which I'm told is iron from my blood stainning skin from broken blood vessels(I had this since 1990 or so?) Also some depression lately.

My wife tells me to tell the doc how I've been feeling. Anyhow, I say doc I'm not up to par and explain the above. He says it could be celiac disese I'll run a test for it with your a1c blood work and liver test for the lipitor I used to be on at that time. He says the floating stools is generally just trapped air and not related to celiac disease. Great I emarrass myself for nothing in my revalation. I say cool. He says he is hesitant to test for celiac because the diet is so tough.

The test come back first on my liver it is inflammed according to the blood work? Doc sets up an ultrasound and tells me to stop the lipitor dose of 5 mg a day I was on. My cholosterol test comes back at 97. The doc says my good cholosteral is too low and bad to high. I say 97 that souds great. He says the individual numbers mean more then the total. I also cut off the beer a day I was drinking to raise the good cholosteral since it didn't work and my liver is messed up. I wait two weeks and have ultra sound. I ask the tec how my liver looked? She smilled big and said I can't diagnois you'll have to wail for some specialist to read it. I say great, but think it must be fine or she wouldn't smile like that. Unless she was sadistic or something . Found a neat article on celiac with liver stuff -www.aafp.org/afp/980301ap/pruessn.html-.

Doc says liver looked fine on ultrasound, but the celiac test is sky high and I need a biopsy of my small bowel. I say what is the percentage from the blood test that I have it? He says 98 percent. I say thats good enough why biopsy. I'm thinking great anoher expensive test. He says it could be something else. I'm thinking what? I ask if there are false positves(thinking of liver test). He says not likely, but should be confirmed by biopsy. I fold like a cheap lawn chair. Not really I had to be sure. I am in recovery room after biopsy and I ask doc hows my villi look? The doc their says it looks like you have celiac disease. We will have to wait for the results of the lab to be sure. Lab results come back I get a letter stating consistant with celiac disese come back in 6 months and test again after going on celiac diet. Great another 4000 dollar procedure. Doc says to inform brothers and sisters to get tested for celiac. One of my brothers and sisters is lactose intollerent and sister has crones. Brother wont test for it says he is almost on diet already. Sisters doctor has cilac disese and will be testing her soon. Other brother and sister no symptoms, but told to get tested. My childrens doctor will be informed soon.

I meet with a dietision. She gives me a hand out and explains I can't eat the junk that has kept me fat all these years(my words not hers). She gives me a handout that is dated, but put together very well. She tells me I could be malenurished I'm thinking I'm 210 and 5'8'' tall with a pot belly come on. I read on the net that celiacs often have veracious appetites to make up for lack of absrption of foods and not all are skinny. I am freaked out, but I am not too upset as I've been a diabetic so long following a diet is second nature to me. Except the insulin pump allowed some varience to that diet with lower a1c counts. She explains to call manufactures on products even on her safe list. I see buggles on her safe list and say cool haven't had those in a while. Get home look on the net and buggles may contain wheat-errrrg.


I find this web forum and other articles on celiac disease with good information. several saying web articles stating floating smelly oily stools are a symptom. I print a copy from mayo clinic website and send it to my doctor and attach a note saying thanks for your quick accurate diagnoses of my celiac disease, but I found this article interesting. Just so you don't think I'm full of hot air or was it trapped air . Actually further reading stated it was trapped air and undigested glutten causing the floaters. Hope he isn't too offended.


Once on diet my stools now go down on the first flush and usually don't float. The bad gas I had as long I can remember is gone so far. I felt better energy in 48 hours on the diet then I had in a long time. Some days after really crappy, but way better overall so far. I'm told this crappy feeling could be wheat withdrawl. or getting gluttened or part of healing or all three? This forum has been a great help for me with recipes, cross contamination issues, and information from others with same or similar problems. I joined a health food store and found the difference on in wheat free, gluten free and gluten free production lines the hard way. With a waste of several 5 dollar boxes of cereral and some other products.

I hope this helps some people
and thanks to others for their help,

Jim

[CKiddings]

My journey has been a little different than most. I can remember since I was in high school having this rash on my arms and sometimes legs. It bothered me and I was embarrassed to wear short sleeve shirts in the Summer. My mom took me to the dermatologist and he said it was dead skin blocking the pores and gave me an expensive cream to apply. This helped improve me skin a little but didn't prevent it from returning. My Mom was a single parent Mom and had little exta money so I told her it wasn't working and just dealt with it for the next twenty years. My teeth started litterally falling apart, crumbling. The dentist said I must have recieved bad genes as the teeth didn't have many cavities or other noticeable abnormalities. After many crowns, and bridges and implants I was finally done, much poorer and I heard that the dentist bought a home in France. Four baby's and fifteen years of marriage later and now nearing fourty I found myself facing the possibilty of being single with out any marketable skills except being a great Mommy.I got a dead end job and went to college. Lots of stress. I became severely anemic and had to have a partial hysterectomy. Continued to be anemic off and on since the surgery. The rash got worse, now on my hands and sometimes face and boy oh boy itchy! I got pneumonia and when that left asthma came and didn't leave. I discovered after visiting Dairy Queen with the kids that I could no longer eat ice cream. Started getting migranes often. Went to doctor and she said to get eyes checked since I was on the computer a lot now with school. Eyes checked out fine. Doctor said it may be food allergies and to keep a food journal for three months so we could determine what foods bothered me. I decided at the same time to go on the Atkins diet. I basically ate fruit, veggies and lean meats. This was before the Atkins boon and there were no prepackaged Atkins foods available in stores or restaurants. I lost 40 pounds and quit being sick. No more headaches, no tummy troubles, and no rash. Finished school, got a good job teaching and then decided I had reached my goal weight wise and quite Atkins. That week I had pizza with the kids. It tasted so good. I hadn't had anything like that for months and months and months. The rash reappeared followed by stomache cramps, nausea, diarrhea and a whopper of a migrane headache. I decided I must be allergic to wheat and have a dairy intolerance. I didn't eat wheat or dairy anymore, but I didn't know a thing about gluten. Some weeks I would feel better, some weeks I would bottom out and be sick. Decided to go back on Atkins. This time Atkins was all the craze and so I bought into it and ate all the packaged stuff as well. It didn't help like it did the first time. I was getting worse. I went to doctor she thought it could be stress, combined with food allergies. She wanted me to get off of Atkins, chill out and then continue with the food diary and come back in a couple months. I did and found wheat bothered me, but so did other things that I thought were wheat free. Sausage, the rice and veggie entree at the deli, sometimes even a salad at the local burger joint would set me back. I was frustrated. I figured I must be allergic to many things. There didn't seem to be a pattern. The asthma came back with a vengence. I could barely talk with out coughing or wheezing. I had panels to rule out cancer, lung perfussion tests ect and so on. Everything came back fine, except that I still couldn't breathe. Now she agreed that it must be multiple allergies and referred me to a specialist to get allergy tests. About a thousand needle pokes later the results came back, mild reaction to molds and mildews. I already knew that. I haven't been able to take pennacillin since I was a child. But that was it. Even wheat which I was absolutely sure of, was supposedly safe for me to eat. My doctor said and I quote, "Well, I don't know what to tell you, just avoid the things that make the asthma and rash worse." She sent me out the door with another prescription for asthma meds and that was it. Well, I felt like a fool, worse, like a hypochondriac. Months of avoiding wheat, all the time, expense and worry over the medical tests. I thought I must be overreacting. I decided it must of been stress and bad luck of the draw when it came to my skin and asthma. I threw abandon to the wind and ate anything I wanted with total disregard to asthma and tummy troubles or rashes. My diet went from fairly healthy to junk food combined with steady doses of benadryl, excedrin for migranes, albuteral, and anti-itch creams. I didn't want to live this way. I was getting depressed. I was tired of my head throbbing and tired of being so tired! I decided to try to start eating super healthy. I threw out the junk food, white flour, sugar, caffeine, and replaced it with, whole wheat and organic everything, as well as stevia and green tea and added supergreen drinks made with barley and alfalfa, along with pro-biotics in the form of green algae that you drank. I threw out the salt and bought sea salt. I felt no better in fact I was getting worse. Now I was getting desperate and a little paniced. I was missing a work because of the asthma. I kept getting pneumonia. One of my students told me that she worked at a covenant cooking for the nuns and one of the nuns had a disease called celiac disease and that she would die if she ate wheat or gluten and so she had to read all the labels and call food companies to make sure she didn't kill the nun. I had never heard of this before. I thought it interesting, but didn't think on it much as I was sick but certainly didn't die when I ate wheat and besides the specialist said wheat was fine for me. A couple years went by and my sister said she went to school with a girl who had celiac disease. I said Oh thats the disease where you die if you eat wheat, right? She told that no you didn't immediately die like a bee sting but it destroyed your intestinal tract. I was curious so I started investigating online. WOW! I was getting excited. Could this be it? If sure sounded like it could be. I didn't want to go back to the doctor. I was still paying off medical bills from the last ordeal. I read that you could do an iodine test and if you forced the rash you had dermatitis herpetiformis. If you had dermatitis herpetiformis you had celiac. I did the test and the rash along with a headache appeared in a matter of minutes. I began educating myself and found many of the things I was doing to try and be healthy were actually making me sick. I still buy whole grains and organic foods for the family and gave the supergreen drink to a friend. I threw out the sea salt and now use sparingly, non-iodinized salt. I am not eating gluten. I am learning how to read labels and call companies to find hidden glutten. I am eating whole foods and I am listening to my body again. The rash is getting better. It has been two and a half weeks and although I am not symptom free yet, I believe I well on the road to complete recovery.

[NickisDragon]

I've never had all the horrendous symptoms you people have dealt with so I guess that makes me very lucky. As a child I caught EVERYTHING that was going around--including scarlet fever. My teeth were weak and crumbly and my nails paper thin. I usually had some type of bronchial something. Coming from good Polish peasant stock, the cure for everything was food and, of course, it was the wrong food--lots of grains and starches. I was forced to drink milk to build up my teeth and nails--I hated milk. (We don't even discuss the folk remedies!! ) I became overweight with bad teeth and nails and I've lived like that all my life and thought it was "normal". My energy levels were always low and I would overeat to gain energy--brain fog does that to you! I would always lose energy as I ate, sometimes becoming too tired to finish my meal. I never ate breakfast 'til around 3 pm because, if I wanted to get any work done, I had to do it before I ate. After I ate, I was useless. Since I'm a type II diabetic, I'm supposed to keep a regular meal schedule and I'd get the lectures about my eating habits from the doctor. When I would explain WHY I didn't eat 'til later, they just thought I was nuts. Around 8 months ago, my mother started having severe bouts of diarhhea and 4-5 hours of cramping. She's lost 60 lbs during this episode and was becoming afraid to leave the house because of "accidents". Her doctor submitted a blood test and it came back positive for Celiac's. I started doing some research for her and some lightbulbs began coming on. I went GF and began to feel so much better. I sent for the Enterolabs test kit and it came back positive for the HLA-DQ8 gene, antigliandin 69 units,
transglutaminase 28 units, anti-casein 41 units. Now, if gluten slips in, I know it within 20 min or so. My mother was just in the hospital and the doctor there advised her that she does NOT have CD and she's thrilled to death because she's been fussing about this since she went GF. (This was based on the biopsy. After she starts eating gluten again, I'm sure she'll come to her senses.
_________________
The Love we withhold is the pain that we carry.
Nicki

B-Day: January 18
DX: October 2005