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MomGoneRunning

Pending Diagnosis; Celiac Vs. Ibs

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I know my post will seem a little more than redundant but every case is different and everyone on these boards seem so knowledgable I can't help but ask for everyone's opinions.

A little bit of history. 27 year old female, student and fulltime laboratory technition. I have a 21 month old son (who is the gem of my life!) I have always been a very healthy individual. I had an appendectomy in 1998 at age 12. Chronic depression and anxiety through out teens and twentys, I figured was to be expected because I lost my mom at age 13 to brain cancer and lived I foster care. Only complication I've had otherwise was a weak cervix during my first and only pregnancy to date. However, over the past 6 months I have noticed unusual abnormalities for myself. Mostly in my GI. I'll go days with diarrhea, then have a day or so with constipation. It alternates between the two, but my bowel activity is never what you consider "normal". My stool (to me) is very foul smelling, and I work in a lab usually this stuff doesn't phase my sense of smell, and appear somewhat greasy, though it's not consistent. I have horrible gas that causes bloating and abdominal pain. somedays I'm very flatulent others I can't pass any but it still feels like its there. My "gut" is very hyperactive most days. I've been suffering from extreme fatigue and insomnia. At first I thought I was lactose intolerant so I eliminated dairy but it did nothing. My labs indicated a sever Vitiman D deficiency of 12 ( reference value >30 to be normal), normal B12, elevated Bilirubin, normal lipid/choloresteral panel, normal CBC/Sed Rate. I am still waiting on my Hemoccult and abdominal/pelvic ultrasound results. My Immunoglobulin/Transglutmerase came back odd. My IgA was negative while my IgG was a definite positive (per my PCP). I've had no recent infections or surgeries that could possibly compromise those results. I have read that the blood test to indicate/diagnose Celiac Sprue are fairly unreliable and that a true diagnoses can really only be obtained from a proper biopsy. I have an appointment for the 28th of Feb to see the GI specialist in town for an examination and further testing. My PCP has recommended that I continue a normal diet untill I receive further instruction from my specialist. What is everyone's personal opinions? I'm sure I sound fairly similar to many other new comers on the board but I would truly appreciate and individual opinion. It is all very nerve wracking, especially all of the inconclusiveness. Thank you in advance for you time and responses!

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It sounds as though you might actually have celiac--going back and forth between diarrhea and constipation is common when eating gluten. And, yes, the blood tests tend to be unreliable, but IMO the biopsies are even more unreliable. If you do a little research, you'll find that the leading expert on celiac, Dr. Alessio Fasano, has said that you shouldn't bother having an endoscopy/biopsy due to their unreliability. So, go ahead and have the biopsy if you'd like, ask for a minimum of eight samples, and then if it turns out negative, try going gluten free to see if you feel any better. Regarding the fatigue and insomnia, it sounds as though you might have iron anemia. Celiacs tend to have a low ferritin level.

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Yes, it could be celiac. Don't accept an IBS diagnosis. Around her we say it stands for "I Be Stumped".

Is your total IgA low? If so, the transglutaminase IgG would indicate celiac disease. With normal IgA, I don't think transglutaminase IgG is very specific for celiac although it can be present. Agreed you need to keep eating gluten until testing is done. You need a full celiac panel including deamidated gliadin and possibly anti-EMA and your GI may want to do a biopsy. Then you can try going off gluten. Non-celiac gluten intolerance will give you all negatives on the testing but still make you very sick. Plus the TTG IgG may be the only indication you get since you haven't been reacting to gluten very long in the scheme of things. Some of us go decades before we are diagnosed.

Vitamin D deficiency can make you fatigued. I used to have insomnia until I started taking fish oil, 1000 mg of EPA+DHA worth.

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Yes, it could be celiac. Don't accept an IBS diagnosis. Around her we say it stands for "I Be Stumped".

Is your total IgA low? If so, the transglutaminase IgG would indicate celiac disease. With normal IgA, I don't think transglutaminase IgG is very specific for celiac although it can be present. Agreed you need to keep eating gluten until testing is done. You need a full celiac panel including deamidated gliadin and possibly anti-EMA and your GI may want to do a biopsy. Then you can try going off gluten. Non-celiac gluten intolerance will give you all negatives on the testing but still make you very sick. Plus the TTG IgG may be the only indication you get since you haven't been reacting to gluten very long in the scheme of things. Some of us go decades before we are diagnosed.

Vitamin D deficiency can make you fatigued. I used to have insomnia until I started taking fish oil, 1000 mg of EPA+DHA worth.

Skylark, I checked my IgA personally and it came back normal. 160 mg/dl with a reference range of 70.0-400.00 mg/dl. Can you explain to me why an IgG level would come back as high/positive with a completely normal IgA?

Now I'm very confused and not sure what should be done.When I went in finally I just thought I was going to be told I had IBS or something. Are the other test you mentioned in your post considered more reliable than what has been done to date? My PCP also started me on a treatment regime for my Vitiman D deficiency, maybe that will help a bit? I am very blessed to not have been suffering for decades like a lot of other posters. I don't want to be misdiagnosed. I am miserable though, despite the short amount of time my symptoms have appeared and I would like to feel normal again.

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the EMA (endomysium) test is 100% specific for celiac, but that is an expensive manual test involving electron microscope and immunoflourescese.

In your case, the deaminated gliadin IgG test might be perfect to test, since that one is 99% specific for celiac. It is a new standard test that has replaced the ttg test in several hospital labs.

Just keep eating gluten because they might want to do an endoscopy to distinguesh between IBS and celiac, and it is possible to have both.

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