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in the middle of testing, feeling like I'm on hold

NickiRose

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NickiRose Newbie
NickiRose
Posted

After adding one more symptom, dry eyes, to the list that has been growing for 2? 5? 10? years, doctor Google informed me that I might have celiac disease. I had been seeing an endocrinologist because I thought my problems were thyroid based, but that doesn't seem to be the case. He was determined to figure it out though. He VERY grudgingly ordered a celiac panel after assuring me that it was only to set my mind at ease. He called me, shocked, on Sunday night to tell me that the tests were positive and to find a GI. I am lucky to live close to a highly recommended celiac disease diagnostic center, and have an appointment on December 17. The doctor I'm seeing has celiac herself, so I'm relieved to be seeing someone who will really understand. I got my lab results emailed to me the other day, and to me, based on the reference ranges, they seem pretty high. I was told the GI will want to do an endoscopy, and not to change my diet until then.

my question is this: it seems the biopsy is used to confirm diagnosis, and that some people end up with a negative biopsy even after pretty convincing labs. Am I wrong to be operating under the assumption that I will get a diagnosis regardless of the biopsy results? Or at least be told to cut out gluten in either circumstance? I feel like I am in a holding pattern, researching the diet I will soon adopt, learning about healing after diagnosis. And grieving, to be honest. Am I foolish to be making these assumptions before talking to the GI? I'm attaching my lab results if anyone cares to look. Tyia

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Gemini Experienced
Gemini
Posted

NickiRose....with test results like this, you don't even need a biopsy, unless you want one.  You have Celiac Disease, based on these results. You failed all of the tests, except the Ttg IgG, which is not as specific for Celiac but useful when a person has IgA deficiency...which you do not.  Concerning the Endomysial Antibody Iga, no other disease will cause a positive on that one except Celiac.  Couple that with a positive Ttg, which is the test for intestinal damage and your Deamidated Gliadin high results, which tests for reaction to the gluten you ingest in your diet and I would say.....Welcome to the Club!  You now have an answer to all of your symptoms. 

Should you decide on having the biopsy anyway, you could possibly have a negative biopsy because there is no telling how much damage you have accumulated and it is quite common for docs to miss the damaged areas if damage is patchy.  I would imagine that any good GI doc with Celiac Disease themselves, would diagnose based on these test results but you never know.

Do not grieve too much as there is so much available today, there is absolutely no need to feel deprived. You will be amazed at how good you will feel and how many symptoms you have that are related to undiagnosed Celiac.  Good luck, whatever you decide to do!

Vegasgirl2007 Newbie
Vegasgirl2007
Posted

I totally know how you feel! I reluctantly stopped eating gluten as a test for a few days after my doctor had done the bloodwork (while I was waiting on results) and to my surprise, I started feeling better about 3 days in--no more constant headache or stomach pain but still a long way from "good". My doctor told me that there was no question but that he was going to refer me to a GI anyway to see if he still wanted to do a biopsy. The GI I saw yesterday acted as if I was crazy at first because he had the bloodwork from my previous doctor (who said I was "sad that I didn't have a boyfriend" which is completely ridiculous!), which was all normal and did not include a celiac panel. Then he saw the panel along with every other test that was done to that point in an attempt to rule things like thyroid issues, blood sugar issues, etc. and decided to schedule me for a biopsy next week. I wouldn't have eaten gluten in about 3.5 weeks at that point so I was told by others that I should still start a gluten challenge even though it is only a week before the test. I ate some last night and this morning and the headache, etc is back with a vengeance already. I hadn't really wanted to do the biopsy anyway, especially after reading through the paper work that says I can't drive for 8 hours afterwards. My concern is that somehow that short period of going gluten free before the biopsy will cause one of the false negatives that I have read so much about.

As for having to go gluten free, I seriously thought I would starve at first since I am so picky and so lazy. I have found some of the gluten-free foods available near me to actually be pretty good even though I used to constantly eat fast food. I am a little concerned about holiday meals, particularly when I go home at Christmas but I think I have already found suitable substitutes for Thanksgiving. It takes way more effort than I was used to, but overall isn't terrible.

Good luck to you and know that you are not alone!

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Fenrir Community Regular
Fenrir
Posted

My TTG was very weakly positive, Deamintated tests were off the charts positive and I had Marsh grade 3b on biopsy. TTG is not the best test, more than likely your biopsy is going to be positive. 

nvsmom Community Regular
nvsmom
Posted

I agree that you have celiac disease. Without a doubt.  IMO, you could take or leave the biopsy.

Biopsies do have a false negative rate that can be as high as 20%. Make sure you have at LEAST 6 samples taken if you get it done.

If it does end up negative some doctors will say you don't have celiac disease. It could happen (but it is unlikely). Do remember that a negative test does not discount the positive tests, just like the negative tTG IgG did not discount the other tests. A negative test at this point just does not support a celiac disease diagnosis. That's all. It still looks like you have it... Four out of five tests positive is quite unusual. One or two positives is much more the norm.

Let us know what you do.  :)

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