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New And Overwhelmed


4beagles

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4beagles Newbie

Hi everyone

With 8 members of my fathers family living with Celiacs, and me suffering many symptoms of the disease for years now - being investigated with Small bowel biopsies that showed inconclusive, IgA levels that were triple what they were suppose to be, and a genetic screen testing that showed 3+'s out of 4 ( what ever that means ) indicating the testing is still inconclusive, but highly points to me having some degree of celiacs :huh: . the doctors have decided I should start a gluten free diet, and I must say I am TOTALLY overwhelmed :( !!!....

If anyone has any tips etc for me (especially if anyone knows of the additive numbering things on labels ) I would appreciate it so much :) .

Also....is it normal to have a really upset tummy when you start gluten free ???? I've been gluten free for two days now and my tummy is more upset now than ever !!! I hope it's just a settling in thing...


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rinne Apprentice

Hi. :)

I suggest a very simple diet in the beginning, I can't help you with the additive lists as I avoid all processed foods. Sorry.

As for your upset stomach perhaps some peppermint tea to help settle it, many people find the first little while difficult in a variety of ways. It is overwhelming at first but it will get easier and you will feel better. :)

There is lots of information and support on this site, welcome. :)

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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