Our Paths to Gluten Free-dom

[caseygirl]

I think it's time to write my story.

Growing up, I was always very healthy. My brother on the other hand was a very sick little boy; he had his first seizure when he was 9 (I was 6). He was in and out of hospitals for the next several years, even having very risky brain surgery when I was 11. I can't remember the exact age but I think I was probably around 7 or 8 when I started getting stomach aches every single night. For about 3 years, I went to bed nauseous. I never told my parents because they had enough to deal with with my brother. I believe this was completely somatic; in order to mentally deal with what was going on, I manifested it physically.

Fast forward to high school. I was always gassy, went to the bathroom a lot (but nothing excessive), had stomach aches sometimes. Despite some mild GI problems, I never complained or told my parents. I think this is the age where I became lactose intolerant because I can remember going to Friendly's (a frequent hang out place in high school) and getting huge ice creams, and then having horrible stomach pains. I never really made the connection though and continued eating dairy. I just thought I had a weak stomach and would just have to deal with it. I remembered always having stomach aches when I was younger and it just made sense that I had a weak stomach.

My junior year of college was when I really became symptomatic. I studied abroad in Scotland for a semester and then backpacked through Europe for 6 weeks, for a total of about 6 months abroad. During this time, I ate TONS of cereal, grilled cheeses, and sandwiches. I was used to a dining hall in college where I could eat premade salad or whatever. In Scotland, my school didn't really have a cafeteria so we would grocery shop ourselves and make our own meals. Well, I didn't really cook (ever) so I would go through boxes and boxes of cereal. I became pretty sick but nothing so alarming that I had to leave Scotland. It was mostly diarrhea, gas, stomach aches. I lost my period for the entire time I was in Scotland and traveling. When I came home, I saw my PCP who attributed my period loss to stress/being so far away from family. The thing is, I wasn't stressed and I actually lived in the same flat with another girl from my college. At least 15 other kids from my college were studying abroad at this school so I never felt like I was lost or out of my comfort zone.

Anyway, I got my period back once I got back to America. At the beginning of my senior year, I was still feeling sick -- mainly I was in the bathroom all the time, my stomach wasn't digesting my food, I was very gassy. I also was getting EXTREMELY painful acid reflux that would keep me awake at night. I played college field hockey and it was starting to affect my playing. I finally saw a GI for the first time. He gave me a colonoscopy and endoscopy. He told me I have stomach ulcers and IBS. He didn't explain much to me, and I knew practically nothing about stomach/autoimmune disorders like Crohn's, colitis, CD, etc.

So, I went on my merry way thinking I just had IBS. After gradution, I took a year off to work before going to get my masters. I lived at home on the Cape. I saw a commercial saying to "milk your diet" and lose ___ lbs. I decided to try consuming 24 ounces of milk per day (I ate a lot of cottage cheese too). After about 4 days, I got incredibly sick. I felt extreme pain when going to the bathroom and was very ill. That's when I finally made the connection and decided I was lactose intolerant. During that year living at home and working, I would get random stomach aches and couldn't eat regularly. I would try to eat as little as possible will working and then eat a lot when I got home because I was so hungry. I just thought it was IBS and again, my stomach was weak.

I moved to Baltimore to start grad school in 2006. Within about 4 months, I became really sick. I lost my appetite, had diarrhea or loose stools, gurgling noises from my stomach. I saw another GI who got my records from my previous GI. She told me that the findings were actually inconclusive, not negative. I was shocked! Why wouldn't my other GI tell me they were inconclusive....he just ASSUMED I had IBS. Grrr. Anyway, after one visit, this GI ordered blood tests (celiac panel) and told me to go GF right away. I was overwhelmed and upset that I would have to change my whole diet. I really had no idea what gluten was and had never heard of celiac. My blood tests came back negative. I went back to see her and she scheduled a colonscopy (but no endoscopy). As I was waking up from the medication, she came into the room and told me, "I think you have Crohn's." I was totally shocked! I didn't see or hear from her for 2 weeks. I went back to see her for a follow up and she told me, you don't have Crohn's; the biopsy came back negative. Then she had the audacity to ask me if I had a boyfriend. She thought I was depressed and stressed. Basically, it was all in my head. I never went back to see her. Knowing what I know now, I can't believe she would tell me to go GF without getting an endoscopy. Seriously, where are the good doctors?!?

Skip forward another year. I'm in my final year of grad school and start having more severe symptoms. I am gassy, having diarrhea, stomach making noises (can't sit through class if I had eaten anything within an hour), stomach pain and stomach bloating. Also, I am always thirsty and become ravenously hungry. Nothing seems to get digested. I just can't take it anymore and see a different GI. She does another colonoscopy and endoscopy (plus another celiac panel, which came back negative). Colonoscopy was clear. Endoscopy says, "...The gastric mucosa was somewhat atrophic with petechial type erythema. The duodenal mucosa was normal expect some mild blunting of villi at the second portion of the duodenum. Retroflexion of the endoscope revealed a hiatal hernia...." I think it's celiac but my doctor says I have "chronic gastritis and esophagitis." She never said anything about what was causing the blunting of my villi.

I start to think, maybe it is in my head?! I mean, I know I'm experiencing all these problems but maybe my stress is perpetuating it. But then I think about all the symptoms I'm having and what I'm eating. I had a hectic schedule and wouldn't usually get home until 10pm. I was eating lots and lots of cereal again. I would go through multiple boxes every few days. I lost my period again. I noticed that when I drank beer, I would get incredibly painful acid reflux. I noticed many wheat products would affect me negatively. Also I had this weird rash on my finger for about 3 months (the 3 months before I went GF). It only affected one finger but there were small, red bumps. I still don't know if what that is all about, but after going GF, it disappeared. I finally had enough and decided to go GF. Within only 2 days, I felt soooooooo much better. The biggest change was my gas. I was experiencing excessive and foul smelling gas....very very embarrasing! Good thing for a supportive roommy Also, my period has come back!

I sent my stool into Enerolab and it shows that I react to gluten, soy, and casein. Also I had the genetic testing and I have one DQ8 gene. So, I may not have celiac but I do have gluten intolerance. I would love to find a doctor who believes that one can be intolerant to gluten without having celiac. I am seeking that medical support, although I love the support I get from everyone here and my family. That's my story - I have been GF for almost 6 months! I think I may have left out a few things but for the most part....here it is! Hopefully I have helped someone....

[aklap]

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_________________
Al

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

[aklap]

back to the top
_________________
Al

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

[aklap]

bump for Moto
_________________
Al

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

[GhstDreamer]

I guess I'll post my story...I'm in my mid thirties but I knew I started having a lot of digestive problems when I was around 13 years old. It came out of the blue with no warning. I had horrible constipation that lasted for 2 weeks - basically I didn't even use the toilet at all. It got to the point in which I was in a lot of pain and I had to check into the hospital.

Fast forward to high school and I used to miss quite a number of days because of diarrhea and bad stomach pains. The migraines that last no less than a week just made things worse. I always hated traveling and going anywhere not near a washroom and I would get really nervous about it (I still do). I had numerous blood work done as well as upper GI and lower GI, x-rays and ultrasounds, etc. During my last year of high school, I had to take medications for my ulcer.

During my undergrad days, I was drinking quite a bit and my ulcer got worse and my digestive issues were just horrible. I was happy if I could last a 90 minute lecture without needing to run to the washroom. Then I ended up with a severe intestinal infection. After I recovered I just attributed all my digestive problems to that one infection without looking further back.

Then during my grad years, I continued to drink quite a bit (beer and vodka) and continue of course to eat lots of pasta, subway sandwiches, etc. My migraines got much worse - there was a time when I couldn't leave my room which was all dark for about two weeks. During that time, I let a lot of my health problems slide because I was caught up with my research.

After my grad years and into the workforce (past my mid-twenties now), my digestive issues were really bad with the diarrhea, nausea, and severe stomach cramps. I knew by then that I couldn't eat whole wheat and any time, I ate anything that was more fibrous, I was in trouble. Anyways, my physician sent me to get lots of blood work done and a bunch of other ultrasounds and xrays (upper and lower GI with the barium). From the blood work, I had some liver digestive enzymes that way off the chart. So I quit the drinking and eating lots of fatty foods. After months of getting consistent blood tests done twice a month, my digestive problems haven't improved a lot. I also had constant acid reflux which I take medication for. At the same time, my esophagus wasn't working properly and started narrowing. By then, I could only eat tiny bites so I wouldn't choke. By now, I was already seeing a GI specialist and after surgery on my esophagus and suffering a bad post-infection, my regular physician decided to send me to an allergist.

So fast forward to about two years ago, my allergist diagnosed me with wheat & gluten and corn allergies. My digestive problems are much better and I've take care of no cross-contamination but I still suffer from time to time some digestive issues, so my physician constantly sends me in to get all the tests done (like tomorrow I have to get the lower GI barium enema - yuck) because she still thinks it's more than the allergies.

Well that's my long road - and it's been one that all my relatives and friends thought was psychological until they started looking up on the information about it.

[aklap]

bump
_________________
Al

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

[ostrich]

Stephanie from A Year of Crockpotting has posted her daughter's (and thus her own) journey over here. It's an excellent read. Some of the stuff about her daughter will probably hit home to those of you with kids.
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[ostrich]

I'm trying to figure out why I never posted my story in here. Ah well...

I suppose it all started when I was around 10 or 11 years old. It began with one thing: oats. Oats made me horribly, violently ill. How would I live without oats? I ate them all the time! They were one of my favorite foods! My parents and I chalked it up to an oat allergy and moved on. But I wasn't getting any better. Slowly but surely more things were added to the list. Almost everything but bread made it on there. The doctors chalked it up to IBS and, again, moved on.

When I was 16 once again I became horribly ill. I missed 6 months worth of high school due to seemingly permanent flu symptoms. At a suggestion from my mom I received an ultrasound. The doctors discovered gallstones, and I was immediately scheduled for surgery. Removing my gallbladder helped, but it wasn't a cure.

Eight-ish years later I was at the end of my rope. I was in a relationship with a wonderful guy (now my husband). The idea of him having to take care of me like I was 80 years old was eating me up inside. I couldn't go out anymore. Heck, sometimes I couldn't even finish a movie in my own home.

I spent a week or so online, desperate for answers. That's when I stumbled across this mysterious Celiac Disease. "All the other 'solutions' failed," I thought. "Why not give this one a try? The worst thing that happens is nothing."

But something did happen. Not all at once. I began noticing that my stomach problems weren't as severe. I had more energy. And that weird "contact dermatitis" on my leg began clearing up.

I found this place in 2006 and haven't looked back since. And you know what? A few months ago I ate some GF bread from Whole Foods. It had oats on top. They were delicious.
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[aklap]

back to the top of the list
_________________
Al

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

[aklap]

back to the top of the list for those that are have had negative testing and are wondering about doing a GF trial. See my post, I'm a poster child for negative testing, but positive results from going GF.
_________________
Al

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

[aklap]

bump
_________________
Al

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

[MoniDew]

At another forum on which I participate, someone asked me how I knew I was gluten-intolerant. I used that as an opportunity to tell my story publicly for the first time. I thought some of you here might like to know, too. Below is a copy/paste of that post. Thanks!


Thank you! Since writing the above, I have been medically diagnosed for genetic celiac sprue. My self-diagnosis has been confirmed.

For me, getting this confirmation was an extremely difficult process. My journey to a truly accurate diagnosis was emotionally excruciating! (Sorry about the dramatic overstatement, but it really was!)

I've never really told the whole story to anyone before, so no one really knows what I went through - with the exception of my family members who were witnesses to my journey. I hope you don't mind the small encyclopedia below. I'm just using this as an opportunity to get it all down somewhere.

I wasn't really clued in by the GI tract symptoms. (gas, bloating, belching, etc.) I just thought that was "normal." As oblivious as I was to this, I was still aware that I had major, multiple, lifelong food allergies. The weird thing is, the foods to which I was allergic seemed to change, come and go, with the exception of wheat - which always seemed to be a problem for me. (VERY common for celiacs to have multiple food allergies.)

What my FAMILY was most upset by were my behavioral/emotional/neurological symptoms. They were disrupting not only my life, but theirs! Both my immediate and my extended family were CONSTANTLY telling me that I was mentally ill. (Imagine how fun that was!) I was inconsistent, unpredictable, unreliable, had NO memory, NEVER slept, had severe mood swings, was deeply depressed, my behavior was wildly erratic, I would emotionally retreat, couldn't relate/connect with myself or others, etc. They were determined that I have a diagnosis of mental illness. So, they continually sent me back to the doctor's office in search of a diagnosis.

But, when I would speak to the doctor and go through the list of symptoms for mental illness and/or Alzheimer's/dementia, etc (not oriented to time/date or location, unable to separate fantasy from reality, auditory or visual hallucinations, gaps of time for which I couldn't give account, unable to recognize familiar objects or people, etc) I had NONE of the symptoms! NONE! The doctor would tell my family I was NOT mentally ill and he didn't know what the problem was, and my family would tell him something was definitely wrong and to please treat me for mental illness anyway! (YIKES!) He would then experiment with various drugs to see if they would be effective, and within 24 hours of being on an anti-psychotic, I would become very psychotic, and he would have to take me off of them! (Yes, anti-psychotics cause psychosis if you DON'T need them.)

The next thing that happened was my miracle. I picked up a book about diet/nutrition, that specifically dealt with treating emotional symptoms. The first thing it said to do was remove gluten from the diet entirely. This gluten challenge was my eye-opener. My symptoms greatly improved (but didn't vanish completely.) Only when I was accidentally exposed to gluten did they return to their previous severity.

After one episode, to which I was exposed to gluten and had a psychotic breakdown, my son was so deeply upset by the event that he basically threatened me. Your diet alone isn't good enough. You need to not be like this, ever! Go back to the doctor and be put on medication that makes you not act like this or I will find another place to live. (Well, he's right!! This is NOT how a mother should act! EVER!)

So, back to the doctor I went, but this time armed with more information. I told him what was going on, what made it better, what made it worse, but then I added that I HAD TO BE GLUTEN FREE completely! He says, NOW YOU TELL ME! (LOL!) He said, if you have had celiac disease this whole time, your GI tract is severely damaged by now. You are unable convert your food into the key nutrients you need. One of the conversions I wasn't making was turning the folate in my food into the methylfolate that my blood, brain and body needed. So, he gave me a Rx for methylfolate. He said, you should start feeling better right away, and slowly get better and better as time goes on. (given that I stayed on my Gfree diet.)

Turns out, methylfolate is the backbone for many neurotransmitters - Dopamine, Serotonin, Nor-epinephrine, etc. I had no neurotransmitters in my brain!! No wonder my behavior was so erratic! Suddenly, I was able to sleep, focus/concentrate, connect with myself and others, etc. I could remember conversations and events. I felt light, happy, refreshed, content, peaceful. It was totally amazing! I was a brand new person!

It continually amazes me how this one little change has made such a gigantic difference in my life. I have truly enjoyed telling my story. Thank you for the opportunity!!
_________________
Love,

MoniDew

diagnosed with genetic celiac disease (celiac sprue) 12/2009
daughter & granddaughter carry genetic markers, too
gluten, dairy/casein, peanut, and soy-free