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Didn't Even Know I Was Being Tested

jeslk

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jeslk Apprentice
jeslk
Posted

Hi,

I found out from my doctor on Friday that I have Celiac Disease. This is one week after finding out I have Thyroid Cancer and four years after finding out I have Non-Hodgkin's Lymphoma. Needless to say, I'm a bit of a mess.

Specifically, here are my results:

Deamidated Gliadin Abs, IgA . . . 15

Deamidated Gliadin Abs, IgG . . . 33 High

t-Transglutaminase (tTG) IgA . . . 16 High

t-Transglutaminase (tTG) IgA . . . 12 High

Endomysial Antibody IgA . . . Positive Abnormal

Immunoglobulin A, Qn, Serum . . . 216

DQ2 . . . Positive

DQ8 . . . Negative

I have an appointment with an gastroenterologist next week and (hopefully) an endoscopy/biopsy the week after. I've been advised not to adopt a gluten-free lifestyle until I have a difinitive diagnosis, but it's hard to do that now that I know how much damage gluten can cause with folks with celiac.

I guess I'm hoping someone can shed some light on how likely it is that I DON'T have celiac with tests like this - is the endoscopy just a formality at this point?

Thanks!

Jess

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SaraKat Contributor
SaraKat
Posted

It looks like you definitely have celiac- I think they say false negatives are common, but false positives are not.

I would have the endoscopy- that way they can see how bad your damage is. How old are you if you don't mind me asking?

I just got dx'd in September with no GI issues. Why did your Dr test you for celiac? What were your symptoms?

I think I heard somewhere recently that there was a link with thyroid cancer/disease and celiac.

mushroom Proficient
mushroom
Posted

Welcome to the board, jeslk, and so sorry to hear about your multiple diagnoses. There are definite correlations between celiac disease and thyroid problems, and a much greater risk of celiacs developing non-Hodgkins lymphoma than the general population, so this could well be the reason your doctor decided to test you for celiac disease. Judging from your blood test results and your other diseases, I would think that you most certainly do have celiac disease. If you have not been having gastrointestinal problems your doctor may well be interested in what kind of damage, if any, has been done to your small intestine. And interested just in having a look around while he is there :P

jeslk Apprentice
jeslk
Posted
  • Author

Thank you both for your responses. I'm 35 years old, which is part of the "problem" - it's really upsetting for me (and probably even more for my family) to be facing so many serious issues. In fact, I'm trying to find some kind of diagnostician at one of the major medical centers who might be able to investigate further in case there's something we're all missing.

I guess my immediate question is, should I really keep eating normally until I get the endoscopy? I just feel like with those numbers I am clearly doing some serious damage by continuing with the gluten . . .

Thanks again - I have found online communitites extraordinarily helpful for my other diseases, and am so happy to have found everyone here.

Best wishes,

Jess

Jestgar Rising Star
Jestgar
Posted

I guess my immediate question is, should I really keep eating normally until I get the endoscopy? I just feel like with those numbers I am clearly doing some serious damage by continuing with the gluten . . .

Probably yes and probably yes.

Your scope is likely only a couple weeks away, so it's worth it to stick with the gluten. I would strongly suggest going gluten-free immediately after the scope to see how it makes you feel.

jeslk Apprentice
jeslk
Posted
  • Author

Probably yes and probably yes.

Your scope is likely only a couple weeks away, so it's worth it to stick with the gluten. I would strongly suggest going gluten-free immediately after the scope to see how it makes you feel.

I will certainly eliminate gluten as soon as the test is done, but I haven't had any physical symptoms - my primary doctor tested for this because of the various other issues I had, plus my anemia.

Thanks for the response!

yorkieluv Newbie
yorkieluv
Posted

I am so sorry to hear of all of the diagnoses. I am 42 and just found out I have issues with gluten (or I think I do) so I don't have any answers but at least it was caught and after the biopsy you can start trying to heal with a gluten free diet.

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okieinalaska Apprentice
okieinalaska
Posted

Welcome and I am so sorry to hear about your health problems. It sounds like your doc is on top of things though. :) I know it really stinks right now while you are getting used to it but the good news is that at least with Celiac you can fix it with diet. (not trying to make that sound sooooo easy but it's not so bad either)

You can do two more weeks on gluten. Think of it as time to say goodbye to any favorite gluten foods you have. And also use the time to find gluten free substitutes and learn to read those labels. Get your kitchen in order etc. -I had lots of time, I had to wait 7 weeks for my endoscopy. :P

Best wishes and regards,

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