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Might Be Celiac...


GeishaGirl

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GeishaGirl Newbie

So I've been what I call "half sick" for about three years. I'm a type 1 diabetic (diagnosed two years ago) and about the time I think the beta cells started going, I started getting wicked stomach problems. The constant swinging between constipation and diarrhea was (still is) intolerable. I have actually (sorry, TMI, but I figure that's par for the course on a forum centered on gut-issues :)) burned my butt with my diarrhea. I would actually run to my husband like a proud child if I had a "normal" poop -- which was rare, and (I'm realizing now) only happened during the weeks I tried to eat low-carb. Towards the end of the last school year (I teach, so this is how I block out time) I wound up having to get other teachers to watch my class so I could run to the bathroom. I started getting tired walking from my classroom to my car, and my arms constantly felt weak, like my blood sugar was low. I'm about 50 pounds overweight, so I figured that was the problem.

When summer hit, I started watching what I ate and exercising -- and felt worse. I started needing 10-13 hours of sleep a night, and could barely move during the day, especially if I'd exercised. I tried to eat right, but kept craving simple carbs like I couldn't get enough. Obviously, my blood sugars suffered horrible. After my endocrinologist basically told me she had no clue, she foisted me off on a gastrointernologist. Before I went to see him, I started studying and realized that celiac sounded like my best bet -- it covered all of the big symptoms, plus others that I'd just lumped into a "I'm tired and stressed" pile -- migraines, night sweats, dry skin, etc.

I've had my blood work. I've had my endoscopy. I see the doctor on Thursday for an official "diagnosis" -- but I started gluten free a few days ago anyway. I figured that even if I'm not officially celiac, the chances of my being highly gluten intolerant are likely. I've been gluten-free for 3 days, and I'm trying really hard not to read too much into it, but here goes:

Day 1: HORRIBLE gas/diarrhea late in the day, but energy and mental clarity felt a little better.

Day 2: Same HORRIBLE stomach problems. No real change.

Day 3: No stomach problems at all. Still exhausted and don't want to get up in the morning, but I get my energy really quick once I get up. Did several hours of shopping without fighting with my husband.

I've been eating a lot of gluten-free chips and cheese dip, but I made some nice broccoli cheddar soup tonight, and my husband made some great chicken cacciatore with rice a few nights ago. We didn't just go pell-mell into this -- we bought books and started planning menus about two weeks before we started (mostly because I insisted on keeping up my regular diet so as no to skew the endoscopy).

DH and I are going to stay gluten-free for the month of September, even if I'm not officially celiac (he's checking to see if it's causing HIS stomach probs and headaches too!). So, I figured -- why wait for a diagnosis? Might as well join and hang out now :)


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ang1e0251 Contributor

Sounds like your body is giving you the answers you need. You're one of those teacher people that I so admire but could never be so you need all your energy. I hope this restores your health and you're back doing that so important job.

brigala Explorer

You sound a lot like me! It took 6 months or so for the non-specific symptoms like fatigue and random pain to clear up, so don't give up quickly. I agree with sticking in the diet for a while even if tests don't confirm celiac. You can be reactive to gluten without having full-blown celiac, and your body will tell you clearly if the diet is right for you.

I also have had the acidic butt-burning poo and it's not fun. It wasn't until a couple of times that it came out without warning (thank heavens I was home both times) that I got serious about finding out what was causing it. "IBS" no longer seemed like an adequate explanation anymore.

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    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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