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Bad Stomach Pains


simply

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simply Newbie

Hi...

I've not yet been diagnosed with Celiac, although I'm pretty sure that I have it. I had no idea what it was until my doctor ran a blood tests for gluten antibodies a few weeks ago thinking that it may be the cause of a wide variety of poo problems.

Anyway, he let me know that one of the tests cam back as a weak positive, that I might have gluten sensitive enteropathy, and that I should see a gastroenterologist. (Note: I chose the two weeks before the blood test to do atkins...as a result, I had NO gluten during those two weeks - with the exception of a small amount of soy sauce.)

Anyway, while my doctor is out of town, I've been eating a lot of bread and pasta because everything I've read says that you should be eating gluten while they try to diagnose you...otherwise, everything comes up false negative.

Right now, I'm having unbelievable stomach pains....they are not really localized...instead they're pretty much all over. Also, my bones hurt, my hair is falling out, blah, blah, blah. The weird thing is that my symptoms are different before going gluten-free for those two weeks than they are now.

My questions:

1. Is it normal to have different symptoms after going gluten-free for two weeks.

2. How much gluten must I eat on a daily basis to make sure I don't get a false negative (couple crackers or a plateful of pasta plus a few slices of garlic bread)?

3. For how many weeks before the blood test must I be eating gluten? Before the biopsy?

4. Is it normal to be obese and have this thing? If it is possible, HOW?

5. Must you fast before taking the gluten anti-bodies blood test (the first time I took it, I had to because of some other blood work that was being done.)

6. Do you have to stay in the hospital to have the tube slid down your throat for the biopsy...or do you have to be in the hospital at all...do they give you drugs if you have a nasty gag reflux.

Yeah, I have lots of other questions, but that should be enough for now.

Thank you all so much...

Simply


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angel-jd1 Community Regular
4. Is it normal to be obese and have this thing? If it is possible, HOW?
I would like to answer essay question number 4 please :D

Your body goes into a survival mode. Seeing as your body isn't getting nutrients(due to the villi flattening) your body starts storing fat. Thus you become obese over time. This doesn't happen to every Celiac, but does to some.

Hope that helps ya!!

-Jessica :rolleyes:

Aimee Newbie

From my understanding, gluten is found in alot more items than just bread and pasta, so even though you may have been adhering to an Atkins diet, you probably were ingesting *some* gluten of some sort. Its amazing the kinds of things I've already found that contain gluten... I'm new to this, but I've found it to be true so far... So you may not have been as free from it as it would seem, but maybe so.

To answer your questions as well as I can. I have had unbelievable stomach pains as well, even after going gluten free, they are still there. I have read it can take weeks to rid yourself of the side effects once on a gluten free diet. My symptoms dont always stay the same... like, my bones ached for months, then I became really gasey, etc etc. The abdominal pains seem to be the flavor of the month =) So I don't know if things would change in 2 weeks or not...

I don't really know how much you should eat to not get a false negative, to be honest. My doctor told me 2 weeks ago that I could begin the gluten free diet even though I was having my biopsy two weeks later, and he said the damage would not reverse that quickly. He told me he even found enough damage to confirm a patient of his 6 full months after they went gluten free. Your doctor can answer these questions for you when you go see them.

I am slightly overweight (15-20 pounds?), I suppose, though in the last month and half when things really got bad (to the point of not eating anything), I began to lose weight (25 pounds and counting). I have read that some people don't react by losing weight. I suppose because some people don't get diarrhea and flush things (I dont), and even though the nutrients may not be being absorbed, doesn't mean the fat is? Good question. Ask your doc and let me know what s/he says =)

I didn't have to do anything before having the blood test done. Matter of fact, I didn't know what he was testing for... he just told me he wanted to do more labs.

I just had my upper endoscopy done on Monday. I have had one done before to find an ulcer, and both experiences were the same (diff doctors, hospitals, etc). I went to the GI Lab at my hospital, they hooked up an IV, put me to sleep just using sedation (keeps you out about 30 minutes or so), and they did the procedure. I felt nothing, remember nothing. I do know they spray your throat with something to numb it in order to combat that gag reflux =) My docs office had me watch an information video on the whole thing before going through with it. There are people who opt not to be sedated, I didn't take that route (though my insurance co believes it to be elective and doesn't pay for it. Money worth spending as far as I'm concerned). Once you're back awake, they let you go home. I went home and slept another 6 hours or so. Piece of cake =)

I hope that helps some... My best advice is to see a doc. Do some research yourself, arm yourself with questions, and see a doc about it all. =)

  • 2 weeks later...
simply Newbie

Well, I was able to see the gastroenterologist today. She was very friendly (what a relief) and she seemed to know what she is doing. She is a faculty member at the University of Michigan medical school, so I'm hoping she's clued in.

Anyway, she said that I probably didn't have celiac despite my symptoms because most people with Celiac are underweight, and I'm 100 pounds over. However, she ordered the proper tests anyway just to be on the safe side - it is an easy test to run, and if that is the problem, we really ought to know now.

So, now I have a week to wait. That's fine. I'm patient.

If I don't have it, I'll need to get a colonoscopy to find out whether I have micro ... colonitis or something like that. I'm not sure if I caught the name quite right.

Later.

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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • 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
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    • 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.
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