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Gi Doc Finally Calling In Celiac!


Luisa2552

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Luisa2552 Apprentice

Well, after months of dealing with what appears to be an old school doctor, he has finally said I have celiac disease. First I was only partially pos. on the antibody test. Then the biopsy showed blunted villi when he says they're atrophied with celiac disease. I told him how much better I was doing gluten free. He then ordered the HLA tests which showed I have the DQ2 gene. So totay he tells me,'Yup, looks like you have Sprue!'.

Anyway, I have this one nagging pain that he feels is due to the celiac disease, but with what I've been through with him, I'm not sure. It's a burning pain in my upper left abdomen just under my ribs. He says I must be getting glutened and this is causing the pain. It does only come now and then so that could be, although I'm being really careful. It takes about 3 days to go away. All my other symptoms are pretty much gone. I feel better than I have in a long time. Just wondering if anyone else has this type of pain.


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gfpaperdoll Rookie

yes, that pain in the upper left side is a common one - & if I get glutened even slightly I get that pain...

I hope you are better soon... Have you double checked all your ingredients - did you read the threads on cleaning out the kitchen re chopping boards that kind of thing...

aikiducky Apprentice

If all your other symptoms have cleared up I'd say it could also just be something that will take a bit of time to heal. I wasn't completely symptom free until something like 8 months into the diet, before that I had ups and downs that were not always glutenings.

Btw, blunted villi is a much stronger indication of celiac than a positive gene test. :) But who cares if it made your doctor happy. :) In any case, you seem to have it all, positive antibodies, blunted villi and a gene, so you at least don't have to doubt the necessity of the diet. :)

Pauliina

Luisa2552 Apprentice

Thanks for your replys. My house is not gluten-free since I am the only one at this point with celiac disease. But I do cook entirely gluten-free and have replaced utensils. What I do have with gluten is on it's own shelf in the pantry- just a few crackers and such for the kids and sandwich bread in the fridge. I never have been much into processed foods so we don;t have a lot in the house. I think my glutenings have been eating out. Still nervous about that. I feel like I don;t want to eat anything that I didn't buy or make! This pain is no fun and it takes days to go away. I just get freaked out that it is something else they are missing! But then it goes away for a while and I calm down. Sorry to rant. These boards have been my salvation. ;)

GFhopeful Rookie

That feeling that something else must be wrong I think seems to be common from what I've read of others and what I've experienced. i'm thinking it's part of the denial process that we're in when diagnosed. I've had many symptoms that have come and gone over the past months and I am so careful with food (no eating out, whole house is gluten-free, etc) and I'm guessing it's all part of the healing process - at least that's what I hope. I don't think I realy understand how serious this disease is and how hard it is on the body - but good news is we will heal and be ok, it just may take a while.

gfpaperdoll Rookie

Sara, when eating out with the family it is okay if you take your own food... Most restaurants really are nice about it...

Luisa2552 Apprentice

Today is the first day I feel a bit better. I've been eatin plain chiken, veggies and egg whites all week. It's probably is just denial, but boy, do I freak out! Especially when you do a search of symptoms! I didn't have pain this bad when I was eating gluten, but now that I've been off :wacko:.

I do need to start being more assertive at restaurants. I have been eating plain salads, oil and vinegar. BORING! What did it this weekend was probably french fries. Didn't even think what they fry them in is also used to fry breaded stuff. :angry: It's a live and learn situation. Until I get this thing under control I think I'll bring my own food to restaurants (if I go at all) <_<


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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
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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