Our Paths to Gluten Free-dom

[SueznRN]

Great thread!
Since I can remember (since birth according to my mom) I have had difficulty with BMs. My mom and grandma used to have to hold me down to insert glycerin chips and/or to give me enemas. The doctors, of course, were stumped. As I grew up, I got used to having one BM per week and abd. bloating.
It got worse when I was in my 20's and I started to retain sodium. My face became really bloated as did my abd. The docs did a LARGE colon biopsy and upper and lower X-rays. "Nothing wrong". They even told my husband that it was probably "psychological".
These problems continued and at 26 years of age, I had a large colon resection. They took out all but one foot of my large colon and sewed what was left back to my small colon. Of course the pathology report came back negative (because they were testing the LARGE bowel and not the small bowel). All of the blood work came back normal as well except for mild anemia.
This procedure caused me to have diarrhea, but at least I was going! I have had non-specific aches and pains and was diagnosed with both IBS and Fibromyalgia at age 40. This was after an exploratory abd surgery and multiple tests. I DID have an upper and lower endoscopy but they still found nothing wrong (no biopsies were done because they did not see anything wrong). I have always been mildly anemic, but they still did not put 2 and 2 together.
FINALLY this past year, I was rushed to the ER with a hemoglobin of 5.8. A new GI doc and the ICU doc thought it was either cancer or CD. I had upper and lower scopes the next morning and my cillia was definitely damaged in my small bowel. The biopsies showed CD. I had blood and iron infusions and the iron infusions continued once per week for 2 months. I now get my Hgb drawn every two weeks and it is hanging around 11.5-12.5. I feel SO much better and have more energy.
Hopefully, more physicians will become educated on CD and catch this problem sooner. I am sure though, that the false negative blood work gets confusing.
Thanks for reading,
Susan

[Kathie]

Well when I was born I was on formula (1962) and I got very ill starting at about 10 days old with stomach problems. Started trying all different kinds of formula. Eventually I got so sick that they told my parents if I was put in the hospital I would die. I was sent home and they told them I had to be rocked 24 hours a day and fed whole milk and honey, no more formula. It was a week of 24 hour rocking before I cried for the first time. Related to CD? Don't know but curious.

Childhood normal, nothing unusual except some severe headaches and years of waking up in the night with horrible muscle cramps. In High School I got sick, tired all the time, no energy, headaches 3-4 days a week from 4PM on, abdominal pain, dizzy, lower backpain constantly, the Doctor said I was staying up to late, lazy, bored, a TEENAGER. My parents would not accept that and I ended up in the hospital, they did a glucose tolerance test (family history of Diabetes both sides) and decided I had hypoglycemia. They also ran a barium study and noted that I retained barium but dismissed it. They also noted tethered strings in the Upper GI x-ray, but called it an anatomical variant. Put me on a high protein, low carb diet. I felt better. After awhile I went back to eating like normal people. Few more glucose tolerance tests, no change.

1983, pregnant first time, great pregnancy, felt wonderful did aerobics until 2 days before delivery, left the hospital weighing less than I did when I got pregnant (had gained 40 lbs, baby 9lbs 1oz.). Did have a problem with numbness and tingling in my feet during pregnancy, didn't go away. Still headaches, muscle pain, backaches, now getting spacey feeling, tired. Decided it was the hypoglcemia and put myself back on the high protein, low carb diet. Felt better.

1985 pregnancy #2, no aerobics this time, still felt ok for me. At 7 months developed varicous veins in one leg that got hot, prescribed bed rest. Alot of problems with feet and stiffness in my joints. Again left hospital at less than pre-preg weight. Exhausted all the time, tried diet, no good. Lived in the fog, couldn't concentrate. Days of such severe muscle aches and weakness I could barely move. The big D started. One day I would wake up with diarrhea, it would start with gas rolling from the right side of my stomach up and over and down the left, I could see it. I would belch, tasted like cheerios, smelly, frothy, foamy, greasy. I would be on and off the pot until about 1:00 and then it would stop. The next day I would be bloated and my stomach ached and I felt constipated all day and the cycle continued. Lost another 25 lbs. Literally starving, I ate massive amounts of food and the weight was just falling off me, I am a large boned person, bottomed out at 135, 5' 7 1/2 ", you could see every bone in my body when I stood up. Then the halucinations started, I would feel things crawling on me and out of the corner of my eye I would imagine spiders crawling on my arms, I was constantly brushing them off only to find there weren't any. Brain fog and exhaustion so bad I would go the store (1/2 mile away) get there and forget what I was there for, have to sit and rest and then go home empty handed.

Tested for rheumatoid arthritis or possible lupus, negative (DR diagnosis based on one week trial of prednisone, I didn't feel miraculously better, so I didn't have it), diagnosed with mild sensory neuropathy. Tested for gastic problems, original diagnosis chron's disease, ordered endoscopy, colonoscopy, negative for chron's. Possible sprue, another endoscopy, diagnosed with Celiac Sprue 3/24/88. Doctor told me I could still have cake on my birthday.

Contacted CSA society, God Bless them and Dr. Rottman, who gave me his home phone number and told me to call anytime. Then fractured my ankle and used the accident insurance money to got to a CSA convention. Wonderful time, given reference to a new doctor. Tried new doctor in Oct. 1988. This one knew what CD was and that there was no such thing as cheating. Big D was much better but I still wasn't feeling great and I had only gained a couple of pounds. Re-examined the diet to find the things I was missing and went on a week of prednisone, to jump start my system. Started gaining weight. Was still living in fog, not as thick and days of severe muscle aches. Tested again for Lupus, at the time there was a list of symptoms and you had to match like ten for a diagnosis and I only matched 9, so he thought I had lupus but as it was incurable, and I didn't want to be on the drugs and I was getting by they skipped giving me the label. Eventually as I worked out the diet I gained weight (as in too much) and the muscle aches, lupus type symptoms went away.

Fast forward, 1992, General Manager McDonalds, very stressed out, Daughter having multiply surgeries and discover that under stress even accidental ingestion of miniscual amounts of gluten causes symptoms. Lost 25 pounds again.

1999 Divorced. Soon new life and new partner leads to frequently eating out and now I am in trouble again. Find a whole new lists of things I never had to think about to avoid.

2006, feeling lousy, Step-daughter drama gueen causing mountains of stress and interviews with DCF, (claimed she tried to kill herself and we didn't care , she didn't, just said so to try and hook a boy and we do care, just ask the counseler we were paying for) End up in hospital with chest pains, diagnosis, there is nothing wrong with me. New gastro Dr. tell him I have CD. Asks if I am losing weight, tell him no, only what I am fighting too loose. Have first follow up endoscopy since diagnosis and CD blood work, diagnosis, I don't have CD. Thank God I am not stupid enough to believe them on that one!

Now when glutened I usually know within 30 minutes; Lady start your engines, (stomach rumbling starts) and I'm off to the commode races. The next day I am usually spacey and tired. I do also get stressed out worrying about having accidents and that can get me running as well. I don't take anything for the Big D, (my new Dr's miracle cure, here take this pill and it will stop the runs, like I want to keep that **** inside me, duh!) unless we are traveling and I know the problem is stress related, not gluten. I have on more than one occasion ridden home from a restaurant in the back off the truck on a porta potty. Hench the reason we don't eat out much anymore.

Started online research on whats new in CD, what a change. Newbies are so blessed, we all are so blessed. Anyway, found ya'll crazy people, love ya, feeling better and NOW if I don't get some work done there will be mutiny when they come to pick up there paychecks and I don't have them done.
_________________
CD by Biopsy 3/25/88

[rinne]

What a great idea to "steal".

A childhood of tummy aches and constipation and headaches, at 11 an accident at school that knocked my teeth out. Sometimes I felt that I walked into the accident, almost as if it gave me a reason I could understand for the pain.

At 16 noticing that when my new friend and I had bread and cheese whiz picnics in the park I would feel bloated and fat.

Went on the Atkin's diet about 21 and felt great.

At twenty three working in a bakery, not eating anything I would still come home and fall asleep and wake into a kind of stupor with puffy eyes and a dry mouth and feeling like I was hung over. I thought there is something wrong (DOH!) and from that point kind of new to avoid bread but was not able to totally.

Migraines every year, though I did not identify them as migraines until 35 because they came with such violent nausea and D.

Through my twenties I ate a vegetarian diet which was largely unprocessed but at thirty my life changed and my diet for about five years was more typical of working folks with pasta for dinner and prepared soups and such. I married at the same time and became noticeably more irritable which I realize now was very much connected to my diet. I became aware of my sensitivity to MSG and cut that out. My sweetie and I bought a small organic garden farm and my diet changed again to more natural foods but I continued to have migraines and mood swings, felt like I was losing my mind sometimes. Eliminated sulfites, no more red wine and got migraines under control. I realized heat was a big trigger and stayed away from hot tubs and such.

1995 I understand that I have a bad digestion, a history of constipation and I begin to try to look after that. I make a conscious effort to avoid wheat.

2003 After a long road trip my hip/sciatic nerve flared up and I spent 7 months in pain, saw the chiropractor, then just as I was better I was rear-ended and spent another 7 months at the chiropractor. Pain in back continues and I finally decide that as long as I am seeing the chiropractor I am not going to get to the bottom of what is wrong though I do not want anything to be wrong.

2005 Finally go to the Doctor because of chest pain, pressure and a feeling of being squeezed round the middle. Doctor does "full exam" sends me off to have my heart checked, declares me fine. I say thank you because I still want to believe nothing is wrong. I am burping lots after my favourite spicy foods so I've had to cut back. I cut bread out of my diet altogether.

2006 Full gastric distress. I go to Doctor, she prescribes Apo-Omeprazole and I come home and look it up on the internet, discover that it stops all acid production in the stomach. This does not make sense to me, I go and buy Club Soda to help myself burp. I find an Acupuncterist and start seeing him twice a week, I edge back from 8 on a pain scale of 1-10 and begin to hope I will get better. I treat my stomach like it is a little baby and I change my ways, I give up coffee in the morning. I see a Gastro who brings up Celiac, I come home, look it up and find all of you.
Oh, and I lost 35 pounds too.

My bloodwork has come back negative. A biopsy is scheduled for September. I am hoping it won't show anything because that will mean I will have caught this at the onset. I will ask for the genetic test for my family's sake but I could care less about what they have to say about this. I know the truth of my body and I will never eat gluten again.

Thanks, this is helpful to do.

[bud7-10]

I'm 25. In 1997 I was having D. I managed it some..cut out all caffeine, and popped ALOT of Immodium. It kept getting worse. By '98, I was very sick. I was so tired, D 15- 20 times a day, stomach aches so bad that I would curl up in a little ball and cry. I had to quit my part-time job and was barely making it to high school. My parents weren't supportive although they saw me sick on a daily basis. My family doc referred me to a GI doc.

There were alot of elderly and older people in the GI doc waiting room. The first thing the gastroenterologist said to me was "It is nice to see such a fresh, young face!" Ewww!! I was 17 and that grossed me out and made me very uncomfortable. We went over my symptoms (severe stomach pain and chronic D) and he talked about tests they would run on me. Oh, and he even had the class and professionalism to ask if I was using this to get out of school. That killed me! I was an honor student, invloved in many school activities...I liked school and was looking at colleges!!! But, since my parents have the idea that doctors know everything and they were mad that I was sick, that idea stuck with them.

So the GI doc ran blood tests, stools tests, a rectal exam, a sonogram, a test where I drank barium and they took x-rays, and a colonoscopy and biopsy. I also went dairy-free and was put on a drug called Levbid. Neither helped. As I was in a recovery area after the colonoscopy, he told me that I was making too much of this, and it was in my head because none of the tests had shown any problems. He did want me to continue with Levbid and mentioned something about IBS. I don't know if any of the blood work was done to test for CD.

I continued to live in the bathroom...D at least 20 times a day. I wanted a second opinion and pushed for it. I went to a pedriatic GI doc. She told me it was IBS and sent me for a lactose intolerence test. That turned out negative. I didn't go back. I didn't think anyone could help me.

My goal was to gratuate from high school. I went to school half a day for the few credits I needed when I could, and although my grades my senior year weren't high, I still managed to gratuate with honors. I didn't go to commencement because I didn't think I could sit through it without needing to go to the bathroom.

Being home all of the time was causing me alot of stress so when I could, I tried to go out with friends...never very far and always where there were bathrooms. That's when I met my husband (although I didn't know it then). He is one of the most understanding people I have ever met. I told him about my tummy troubles a little I didn't go into detail...it was embarassing! He called me and looked up stuff in a vitamin/supplement book and found that digestive enzymes, ginger and acidolpholus might help. He bought them and brought them over to my house. He told me about an allergy doctor that deals with alternative medicine some. So I made an appointment, and he took me. I wasn't hopeful that this doc could help me...I don't really trust docs anymore.

The first thing the new doc said was "Well, young lady, I bet they are telling you it is all in your head and there's nothing they can do for you." He had me do a challenge-elimination diet. I reacted to wheat, eggs and vinegar. He said absolutely no wheat, but I may tolerate small occasional amounts of vinegar. I lost my health ins. though my parents because I turned 19 and wasn't able to go back. I have been wheat and egg free ever since.

I just learned to make the best of things. I thought my boyfriend (now husband) was going to break up with me with me never being able to go do things and after the time we went to the movies and had to leave just as the previews were ending, but he stuck with me. I am so lucky and blessed to be his wife. We've been married for 4 years. We adapt to how I am feeling. We rent movies now. We "speed shop" (lets see how quick we can fill up the cart with the groceries we need 'cause I'm sick). He is ok that I am not able to work yet. (although once again my non-supportive family had problems with it).

I never cheated with eating wheat or eggs. I missed pizza the most. I'd melt moz. cheese into a bowl of pizza sauce and eat it like dip, just to try to get that pizza taste. My husband and I made alot of "experiments" with food for me.

It was a couple years before I realized to look in the local health food store for stuff. I was so excited...they had wheat free /GF pasta!!
After 3 years I finally got to have lasagna again!! I also found Bette Hagman GF cookbooks. Funny...I bought and read and used GF cookbooks (I couldn't really find many just wheat-free). It never occured to me that I could have CD...I had stopped looking to get better. I figured that this was just how I was.

We got health insurance that would cover going back to the doc. that had me do the challenge-elimination diet. Last year, we went for allergy testing and are now doing weekly allergy shots for environmental allergies. I was also dx'ed with hypothyroidism and am taking thyroid med. During an appt. last spring, the nurse practicioner was talking with me and I asked if there were any other supplements that would help my stomach. (I take alot of supplements). She looked back in my records and said they were sending me for bloodwork for CD. She said it didn't look like anyone had tested me for it, and since we knew I couldn't have wheat, it would be a good idea.

With the blood work and positive reaction to the diet, I was dx'ed with CD. They also found I have a B-12 deficiency. The diet change hasn't been too much of a shock; I had the GF cookbooks, and was already WF. It still sucked to give up beer, oatmeal and rice krispies. When I found out I had CD, I pulled everything out of the kitchen cupboards and spent hours calling co.s to see it their products are GF.

My husband has been supportive and helpful. I wish I could say the same for my family. I am the freak. And none of them want to hear about how CD is genetic. I won't eat at their house. There's way too much cross contamination. We visit on the holidays after we've eaten our holiday meal at home. I am glad to be here where this is understood.

I am not progressing as quickly as I hoped I would. I think maybe because I had been so very sick for a long time, it might take me longer to heal. I have learned alot by lurking here.
_________________
Wheat-free and egg-free since 10/1999.
GF since CD dx 5/2005.
Many food alleriges

[sari]

He is nearly 28 and the majority of his life he has been ill & underweight. I am glad that we continued pressing for tests after the Coeliac Society recommended we do so.

DH was finally diagnosed after his 3rd biopsy. We persisted, not because we wanted him to have this disease, but because we knew something was wrong and we didn't want to second guess for the rest of his life. This time we went private as the first test at the public the Doctor took a biopsy from the wrong area and only one biopsy, and then the second time the test came back inconclusive, so basically negative.

I spoke to a rep from the Coeliac society and they informed us that because the disease is patchy Doctors are meant to take multiple samples for diagnosis purposes. At the public hospital both times they only took 1!!

It really annoys me because I wonder how many people have gone undiagnosed. You can get all sorts of problems if you go undiscovered! My MIL only just found out a few years ago at the age of 50 and has so many health problems. She has Oesteoporosis and some other equally scary thing.

There are the symptoms DH had:

1. Eczema as a toddler
2. Bowel problems, and stomach aches
3. Muscle aches
4. Depression (even as a small child, from a happy well balanced family)
5. Lethargy - always wanted to sleep
6. Underweight his whole life
7. Found it hard to eat at times
8. Weird reaction to dairy

My MIL was her Doctors first Coeliac patient (she had been seeing him for the last 20 years). Doctors are not taught all that much about Coeliac Disease, I have been told that in their text books there is only one page dedicated to it. I would assume this is all changing now though. I am surprised though at how many people have been given incorrect advise about Coeliac Disease by their Doctors. My MIL's Doctor found out she was a Coeliac by accident, they were doing a heap of other tests and checking for coeliac Disease was just a routine thing that the hospital he sent her to did. Since then her Doctor has done some extra study on the topic has found that quite a few more of his patients have the disease.

My MIL was told that my DH was just "putting up an act" so many times throughout his life. They said they couldn't find anything wrong with him, and one Doctor even told her that she fed him too well which is why he was apparently underweight (how on earth does that make sense?).

I am glad he finally has a diagnosis. He wouldn't have it though if we hadn't have really pushed for the tests. It is a bit of a worry to be honest. I wonder how many people out there have Coeliac Disease, but have been tested for it, and due to human error, or perhaps a lack of understanding on how the Disease works - they have been told they don't have it.

My husband is slowly improving now, which is good
_________________
~*~Sari~*~

[neesee]

Hi Everyone,

Al, I have a feeling you bumped this for me. I'm very, very shy so please bear with me. Blame the CD for that. I've always been ashamed of my belly problems. I can't get over it

First, I'm really small. 4' 11" with my shoes on. My size 2 1/2 shoes.

Now that I think about it, I always had some tummy troubles when I was little. When I was a teenager, it got better.

I met my DH my senior year of high school. It was love at first sight. We got married when I was 18, he was 19, and we had our first baby that year. 1972

We had 2 more babies in 1975 and 1979. Somewhere in that time frame my belly got bad again, real bad. Oh, I also had a miscarriage in 1974. A boy. He wasn't implanted firmly enough is what the Dr said.

I lived my life and ignored my belly as much as possible.

My Mom developed type I diabetes when she was 44 and died from it when she was 55. That's why she wasn't there for me.

In May of 1987, I couldn't ignore my belly any longer. I went to the Dr and he ran a few tests and said I was nervous. He told my the mind is a powerful thing and it was causing my trouble. He gave me xanax and patted me on the head.

By December I was a mess. On the 18th I collapsed. I was admitted to the hospital and diagnosed with anorexia nervosa because I couldn't eat anymore. It hurt too bad to eat. One bite and I felt like I had eaten a ton of food. I knew I wasn't anorexic, just sick with something. I was sent home the dat after Christmas. Still sick.

The day after New Years my Dad said enough. He took me to see the Dr and told the Dr to do something now! So I was put in the hospital again.
This time they brought in a different GI. He must have suspected from the start because he asked me what my heritage was. I'm German French English and Irish. They ran a lot of tests. One of then an upper endoscopy, and they took a biopsy. There it was. Non tropical sprue is what thay called it.

It took months before I was better. When I left the hospital I was taking 50,000 Iu of Aqusol A and 50,000 Iu of drisdol and folic acid. I got b12 shots too.

My Dr apologized to me for being wrong and asked me to forgive him. Of course I did. He was always so kind to me. He retired about 5 years ago.
I'm still trying to find another Dr that I like.

Denise

[Purrsnikitty]

Wow, I feel so lucky. Some of you guys have had such long journeys. I am pretty sure now (isn't 20/20 hindsight a great thing?) that I had active CD as an 8-year old. That's when I broke out with a strange rash on my neck, shoulders and forehead - blisters and itchy red patches which dried into a crusty scab - gross! My mother was horrified and took me to a dermatologist who prescribed a variety of salves which didn't help at all. Mom read everything she could find and talked to her friends and decided I was allergic at one time or another to just about everything good (like chocolate) - funny, at one point she decided wheat was the bad guy. Little did we know how close to the truth she was. Around age 11, I was diagnosed with hypothyroidism which later turned out to be Hashimoto's (here we go with autoimmune fun). By the time I was 15, the rash had pretty well cleared up on its own. I've been on one dosage or another of thyroid meds ever since. Got married at 20, had two babies, held down various jobs, got a master's degree and life was medically pretty uneventful, except for persistent anemia until about 5 years ago. Suddenly, my weight started dropping - 110 is pretty anorexic on me. I couldn't stay out of the bathroom, dealt with chronic brain fog, was genuinely exhausted most of the time. Somehow I got through moving a household and three years of deacon school while all this was going on. The grace of God, I am sure.

I know most of you have had bad luck with your primary care doctors, but mine probably saved my life. In January this year I went to him with the usual list of complaints (he had just become our family doctor as we had only moved to this area a year before). He ordered a bunch of blood work - not the sprue panel as his suspicions weren't that solid yet - when it came back with low iron, low B12, low folic acid and low everything else, he said "aha - malabsorption - now let's figure out why", that's when he sent me to the GI doc who did run the sprue panel followed by an endoscopy. The rest is history. How wonderful to feel like a normal human being again.

These are great stories, you guys. Keep 'em coming.
_________________
"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:18

[GradyoftheGlade]

It is fantastic to read everyone's story.

Mine started around 10 yrs. ago, give or take. Constantly in the restroom like everyone else.. 10 or more times a day. Several times lab work was run, but nothing. (dont' think they checked for CD)

Approx. 4 yrs. ago, things took a huge turn for the worse, developed incredible pain in the upper R abdomen. Family doctor ordered an ultrasound, couple other tests.. said they could't see anything. At work I would feel shakey before break.. and then after break (would have coffee/snack) then I would not feel shakey. The pain continued, and finally subsided. I knew it had to have been something big.. but thought.. well, it has passed now.
I kept feeling weaker and sicker. Then I found out I was pregnant with my third child. I went into the OB and stated my severe problems..he was too busy to see me, I saw the nurse, she blew me off after checking my blood pressure, ect.
When I arrived home I phoned an OB from previous years, and he did see me right away.. on his lunch hour. His 'in office' diagnosis.. reflux. Gave me prevacid. Didn't help, so he doubled it. No go.

The pregnancy continued with episodes of passing out, UTI's, falling down from weakness, ER visits.. they found nothing. I knew in my mind that my child and I were dying, no doubt about it.

At 27 weeks I went into labor. My husband rushed me to our local hospital, still they did not know what was happening. Scary huh! I was life flight to our trauma hospital. There I became off and on unconcious, went into diabetic coma. Here I was a diabetic. How could they have missed something like that! I had gall bladder disease and pancreatitis, three mini strokes. Even after my blood sugar was brought down, I was extremely ill. No one could understand.
I was given zoloft, for post traumatic stress. (which I did have) Still living in the restroom, every day.
My joints had begun to crack, every joint. Boy it was scary getting up in the morning, I felt like that Jack character- on Nightmare before Christmas. Blood test showed I was hypokalemic .. low potassium level. After a lenthy prescription, it still would not hit the safe range. I was having severe muscle spasms all over the body.

My new neurologist and cardiologist informed me of the damage to my heart, and nerves in my chest, legs and arms. Boy thats nice.
The neurologist told me, I would never go back to work again. I was a lucky person who loved their work. No more.

Still I was living in the restroom and taking a shower would fatigue me to the point of needed to sleep. Finally I stumbled apon an article about a doctor near me, while reading up on my thyroid tests and autoimmune tests that had come back unnormal. I made an appt. to see him and had to wait.

Finally, after 4 years, I find a real doctor!! After one visit, and actually listening, I start to have tests and he starts to treat me, and finally there was light at the end of the tunnel. For the first time in years, I was up on my feet for the entire day with no sleeping!
I am a type 1 diabetic w/ insulin pump also, so I had went through the diet withdrawl and all the emotions that go with. So this time around it was much better. I am still making mistakes, but things have improved so much! I know I will get there, to where all my gluten is eliminated.
Finding this board was a Godsend. Thank you
I hope my joints and body can recover enough to be out of pain, and have some strength in the future.

I would say to anyone.. if you know something is wrong, then it is. It is your body, you know it best and how it feels. Keep struggling to find what is going on inside you.

[kathyjp]

I have a 20 year old son with celiac disease. He was diagnosed at 18 months. He was a normal birth-weight baby, gained weight well his first year, then lost weight between 12 and 18 months. He had really foul smelling daipers and frequent screaming fits. Our family doctor told me to stop nursing hgim, and sent me to a pediatrician. That doctor took one look at him and said it looked like celiac disease, but first to be on the safe side, he sent us to have him tested for cystic fybrosis. Thankfully that test was negative (CF is fatal.) We started immediately on a GF diet and could see improvement in his behaviour, his skin, and his digestion. then the docotr suggested putting him back on a GF diet to have him tested. We didn't. (Ds's diagnosis was confirmed with a blood test in his teens.)

At that time there were very few GF foods available. Ds ate cold pancakes instead of bread because they were the closest thing to GF bread I could make, and had spaghetti sauce over rice because we couldn't get GF pasta. Things have improved so much.

He's always been really good about his diet. He moved out a month ago to attend college in a different city.

I have had lots of digestive problems over the years and went Gf about three years ago to see if it helped. I am much healthier on a Gf diet, so even though I'm not officially diagnosed, I'm GF for life too. it's much easier to start when you've already been serving up GF meals for years and years.

[WestWalker]

Gosh, I have never told my story. No one has really cared before. I thought maybe it would be a good idea to tell my story at least for me. Maybe by writing it out it might cause me to reflect or learn something good.

I was just diagnosed with CD over the past year. But as I learn more about the disease and hear (read) other’s stories I realize that I must have had active CD when I was at least in my early 20’s in college. It was then that I started to have the worst (and this is the part I just hate to talk about -) stomach and constipation problems. I remember after a night of pizza, and of course beer (hey, it was college and I only had a few), I ended up in the campus hospital with lots of pain. They didn’t know what to do. They just screamed at me not to drink, kept me over night and let me go. No IV or anything. I just lived with the pain on my own for the rest of college sometimes staying up all night in the bathroom at times almost passing out on the floor.

I was always really thin and everyone thought I looked like death since I was skin and bones. It was normal for me so I just thought their comments were really rude. They had names for me being too skinny. I guess they thought that it was ok to call someone names if they were really thin – but of course, you wouldn’t call someone names or comment to someone on how obese they were. I think it hurt me, no I’m not bitter. Ok, maybe just a little. I don’t think we should call anybody any names.

Backtracking a little: In high school, I went to school and worked a couple of jobs. So I was working 60 hours a week and going to high school. I ended up with “mononucleosis” and slept three days straight. I lost a lot of my ability to regain energy then. So maybe my new normal energy level was 80% instead of 100%. It was a big change but enough to keep going on.

In 1987, on a hike through the Sierra’s of California a tick bit me. I had the classic symptoms and rash of Lyme disease. I could not have been a better candidate to diagnose correctly. But alas, no one had heard of Lyme disease and of course it was all in my mind. I was most certainly depressed and needed to just get over it. Unfortunately, the depression diagnosis didn’t help me. At first, the pain started in my big right toe. It had been broken during my attempt to break up a fight during college between the Frat guys and the Residence Hall guys with me being the one being thrown down the stairs. So here was my vulnerability, my big right toe.

From there the pain spread from my right toe and foot to my left toes and foot. Then it spread to my knees. Two years later and still undiagnosed, I became very ill. I could no longer move. The only way to get out of bed was to roll and land on the floor. I was so stiff it was as if all my joints had been fused together. Everything hurt. My brain felt like it was on fire. My chest began to hurt all the time. I began to have every kind of pain imaginable. But of course, it was depression.

During that time, the disease damaged my brain, heart, all my nerves, and muscles and destroyed my joints. The 80% energy level sunk and over the next 17 years kept sinking until in 2004 I hit 0% energy.

I was diagnosed with Lyme disease finally in 1989 after the disease became widely known through the media. In fact, Time magazine did its first article on the disease using the National Park in my Bay Area county. So I told the doctor about it and he told me there was no Lyme in California. So I had to go on a long fight for treatment until he got mad at me and sent me to a Rheumatology specialist. I was treated by 60 days of mega antibiotics. At least the “brain on fire” feeling ended. But I declined every year after that in health, strength, mental abilities, while the pain and damage to my body increased. All for no apparent reason, so they said.

So I was told I had fibromyalgia, chronic fatigue syndrome, and of course depression since it was all really in my head any way.

I began to have major problems with food. My body cringed at the thought of eating bread. Meat and dairy products were my enemies because they would leave me in so much pain I would be lying on the bathroom floor wanting to die. Nothing would work internally. I couldn’t pass the food I ate and I couldn’t vomit it up either.

I began to end up in the hospital emergency room because no matter how much liquids I drank, I would be dehydrated. No longer taking in things by mouth brought any nourishment or water. My body would shut down and I couldn’t speak, move, or take care of myself. Starvation and dehydration will kill you. But each time I went to the hospital they would be puzzled why I would be in this state with no apparent reason or explanation. So they told me to see psychiatrist, a psychologist, a social worker etc.

Every few years I would go back to the same old Rheumatologist who finally caved and gave my antibiotics for Lyme disease. I would ask if there were any new treatments, new medications, new studies that would resolve why my health was continuing to decline and my pain levels were continuing to increase.

I had to give up sports and swimming, then walking. I would be so tired after work I would lay in my car for hours until the traffic finally was gone and I could drive home without the stop and go 1-2hr trip. I would stand on the sidewalk in the middle of down town and just want to lay down right there on the curb. I was so tired I felt I did not have the energy to take another breath.

In the meantime, I kept ending up in the hospital dehydrated. I stopped eating the foods I loved but had no clue about CD. Finally in 2004 (as I was told by the doctor), two new blood tests came out that would indicate CD. Both showed positive when I was tested in 2005. But we needed the Gastro doctor to confirm with a biopsy. I had so many tests over the years with tubes going in and out every orifice with no reason for all my problems. And now after the latest biopsy the doctor tells me that the last biopsy several years before indicated I had CD but he never said anything.

So now that I had 0% energy, pain beyond what was doable without medication, the inability to keep myself from being injured by the smallest muscular movement or exercise, I had to quit work. I began to lose everything I worked for. I couldn’t get out of bed even after spending 12 hours in it. Everything in my body was now damaged beyond what seemed repairable. But finally I had a diagnosis of Celiac disease. Many things now made sense as I began to research and find the common symptoms. I had an explanation for the malnourishment and dehydration.

However, I am not sure why I am the lucky one. In the last 7 years, I have ended up in the emergency room with only an IV to save me. The last time was only three weeks ago as I came closer to death than ever before - from cross-contaminated GF product. If I had not been airlifted to the hospital, I would have been dead in several more hours. I couldn’t speak and was so weak I could no longer care for myself. My body had started to shut itself down and flood my blood with acid. Though I was drinking water it didn’t matter. I could feel the poison in my system from the contaminated “glutened” food. Though what remained after 5 days was so very small, it would not pass through my system. Finally after the IV’s and more IV’s putting nutrients directly into my blood stream, the poison passed and my body felt completely different. The enemy had been removed. I would survive. But this time barely. The damage done made me bleed profusely internally and I could smell the blood rotting inside me. I couldn’t stand to smell myself. And as I bled, my heart got slower and slower and I began to loose mental cognition. I thought I was going into the peaceful eternal existence of rest. Twice in 48 hours I had come close to death – all because a GF labeled food wasn’t GF at all.

As I have gone GF, I have become more sensitive to the little protein molecule that terrorizes me. I am even afraid to eat now. I don’t really care about food any more.

I am sure things will get better in the future. But for now it is a challenge having lost everything over the last two years because I lost my health. I am still tired, I still am in pain, my joints are worse than ever as they shift and stick and pop out of place. My muscles no longer work and the so many other things going on in my body it is hard to tell where one pain or problem ends and another starts. It just seems like it is all layered on top of each other.

It is disappointing that my family dislikes sick people and they don’t even know how to be supportive. They live far away in a different state any way and I don’t see them that often. Though I did visit home this year after learning of my CD and told my mother about all the restrictions and how I have to be careful in the kitchen etc. She got mad and told me, ”you could just starve to death then”. I went out and bought all my own food and cooking gear. But on the other hand, in my last hospitalization a couple of weeks ago, I could not be more grateful to God for friends who drove several hours to where the medical flight had taken me. They stayed with me and took me home with them and let me stay there for a week while I ate chicken broth and recovered. They drove 10 hours round trip to fetch my vehicle where I left it before I was airlifted away. They are champions in my eyes.

Were will I be in 5 years? Healthy and whole, recovered and restored. And maybe I will be a blessing to others, a champion for them.

[aklap]

bump up for some of our new members
_________________
Al

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

[aklap]

bump for new members
_________________
Al

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

[nancw]

I'm grateful for this opportunity to tell my story. Into the way-back machine...

For my 40th birthday I get a burst ovarian cyst and a huge anxiety attack. Can't eat...lose 10 pounds in 2 weeks. No real gastro symptoms (or masked by effects of burst cyst -general abdominal pain, fatigue, anxiety). Get ultrasound - confirms blown cyst, and a scrip for Xanax. Doc suggests going on anti-depressants. No thank you.

3 months later
Driving to work one day 3 weeks before wedding, and arms & legs feel tight on skin level. Very strange...anxiety and depression creeping in for no apparent reason except the impending wedding, I figure. Every day for a week it gets worse: crawling skin, no appetite w/ low level nausea, going to bed immediately after work, mounting anxiety and depression, can't do anything, don't want to spend time w/ kids and hubby-to-be. Can't function at work. Go to see my regular doc. Her PA takes blood - suspects vitamin K deficiency. Nothing comes up as remarkable in bloodwork. Spend 2 weeks on the couch on Xanax while finalizing wedding plans. Peel myself off the couch week prior to wedding and somehow get through. Down a total of 15 lbs in 3 weeks

9 months later
I spend Mother's Day in bed, crying, on Xanax (haven't pulled it out for quite awhile). Three days later - I'm feeling really good and want to eat! Get a Subway, and launch into full blown anxiety attack immediately after eating. Call doctor to schedule appointment in the next week to discuss. Two days after that, have a lovely microbew beer and have instant anxiety attack.
Spend several hours on internet and learn everything I can about this crazy thing called gluten intolerance. Immediately cut out all possible sources of gluten. Two weeks later Doc says "you may have sprue". OK - thanks, I already figured that out. Got bloodwork done, but had been GF for 3 weeks. Negative all the way around. Feel great - eating simple, naked food and have not felt this good in years. Spend so much time on the internet and reading to get a handle on living GF. Doc & agree not to biopsy, and to continue w/ diet and check back in 6 months.
Doc says her official diagnosis for me is "gluten sensitivity".

So here I sit 6 months later, and feel blessed to have figured out my gluten intolerance. In retrospect I now recognize that when I felt bad, all I could eat was comfort food - oatmeal, bread, pasta. No wonder I always just wanted to sleep after eating, and needed the Xanax to overcome the anxiety so I COULD sleep. Still frustrated, angry and sad at times, but learning to live with this insidious, complicated, far-reaching disease.Thanks all for listening, and for being my favorite GF resource.
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Nance

gluten, dairy, soy, rice, corn, yeast and 99% grain-free

[Lizbuppers]

This is such a great idea! Hopefully it will help a few folks out there.

My path to gluten free is probably more typical of what Americans experience. The first symptom i noticed was that after dinner, if i reclined at all (on the couch, etc) I would get knife-like pains in my shoulders whenever I got vertical. They would disappear the moment I lay down. I later learned these were referred pain, caused by pressure on my diaphragm from gas in my abdomen. Of course, I never mentioned this to anyone except my hubby, and I just stayed vertical after eating. I also stopped all food after 5 PM.

As time went by, I began to have other symptoms. I had 2 pregnancies, during both of which I gained a healthy 20 and 22 pounds respectively, but I had very small babies and made very small placentas. The first was a surprise to the docs, so I was watched and tested like crazy the second time, with the same result. I also lost weight after every delivery - a fact that I, a typical American woman, loved.

I also began feeling nauseous every day. EVERY DAY. A little after lunch, and big time about an hour after dinner. That would last for at least 5- 6 hrs. I would take Mylanta-type meds, which might help for a few minutes, but it would always return. Along with the nausea, I would have the bloating and very unhuman-like noises coming from my esophagus everytime I would inhale. Those are borborigmi, and it was quite a conversation piece. All along, I never mentioned any of this to my doctors, just figuring that I had a "bad stomach" and would have to live with it. I kept losing weight, which didn't bother me at all. I also developed anemia, which did not respond to iron. I work in a hospital, and there were times that I felt faint at work, but again, I just kept doing what I was doing.

I should probably mention that I was a huge carbohydrate (read gluten) eater. Big on cereal, bagels, pasta and pretzels. Those were the days...

I then broke my ankel from stepping on the edge of a slightly raised pavement. Even the ER docs couldn't believe that it snapped like that. Later on, of course, I found that I had developed osteoporosis. And I drank mile literally by the gallon my entire life.

I also had depression, mind fog... all those other things we all know about.

I finally brought it up to my doctor when my weight started to precipitously drop. Mind you, I have always seen a doctor regularly. I just always answered that I felt fine whenever asked. I never mentioned the daily pain, bloating and nausea that I was experiencing. When I started noticing alot of muscle wasting along with the weight loss, I finally asked my doctore if I could be allergic to wheat (having never heard of gluten). I got the blood test, which was off the charts, followed up with a biopsy, which showed severe damage to my small intestine. That was 5 years ago this month, and it has been a long steep learning curve. I feel so much better (of course), and I eat very healthfully in many ways. Reading labels really makes one aware of the chemicals that are in everday foods. My weight has stabilized, my anemia resolved, my bones are now just osteopenic ( a step in the right direction). Eating out remains my low point, so I try to avoid it. I live in rural Maine, and there are only so many salads one can eat, especially when they are the typical bland, iceberg/hard tomato kind. At home we eat great. Most dinners are GF, but sometimes when my kids are home from school I make them all regular stuff and eat my own food.

The sad ending to my tale is that it took at least 18 years for me to be diagnosed, and it was really my fault for not mentioning it. I am now an RN, and it frustrates me when I hear people talk about their lifestyles and health issues and their own lack of communication with their docs. For all I know, I could have had this alot longer, just not noticed any symptoms, although I know that stress can trigger it, and that year I bought my first home, my mom died, and I got married, all in the space of 5 months.

Sorry for rambling on like this, but it's a long story, like so many others out there!
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Most people don't know there are angels whose only job is to make sure you don't fall asleep and miss your life!

[aklap]

bump for new members
_________________
Al

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