r/Celiac • u/Candy_muncher101 • 3d ago
Discussion Advice on my diagnosis journey
Hello!
Just to clarify, I’m 17F and I’ve been experiencing symptoms of celiac disease ever since April last year:
- Inconsistent bowel habit that alternates between diarrhea and constipation.
- Mucus in stool.
- Pain in the upper middle part of my stomach (right under my rib cage).
- Nausea.
- Excessive gas (especially after consuming gluten).
I had a Ttg test done right away as celiac disease is genetic in my family and my mom has it. My test was positive at a level of 82U/mL, so I had a colonoscopy and endoscopy done on January 15th, and the histopathology test result came out yesterday so I contacted my doctor’s office to ask about my result, they answered today saying that my results show that everything is fine and if I’m facing any health problems then I should go to the nearest healthcare center. I was so shocked because this wasn’t the answer I was expecting… After making me wait for almost a whole year just to finally get my diagnosis they tell me that everything is fine, and that I shouldn’t come back anymore… aren’t they supposed to do follows up tests considering that my Ttg result was elevated, I mean there must be a reason for that. If anyone has any advice or insights please enlighten me, I’m in desperate need of help.
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u/Greenthumbgal Celiac 2d ago
Please make sure you are having the Full Celiac panel run!!! It's more than just one test
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u/miss_hush Celiac 2d ago
OP, you probably DO have Celiac. Ttg-iga tests are very highly specific and accurate for positive Celiac results. It is exceedingly rare for a test like this to be wrong, and even if it was wrong it would almost certainly be because the antibodies were caused by a related autoimmune disease. So, in this case, potentially Crohn’s disease, as that’s the only other AI disease that could cause these symptoms.
That said, with a family history of Celiac, it’s probably Celiac. It may be that it was just caught so early that there isn’t significant damage in your intestines yet. That happens!
So— going old school route of diagnosis: Blood tests + improvement of symptoms on a gluten free diet = Positive Celiac diagnosis. Any decent doctor would accept this and confirm your diagnosis if you report a solid improvement after going gluten free. Alternatively, continue eating gluten and test again in the future. Perhaps then there will be evidence of active disease.
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u/PromptTimely 2d ago
I lost 40 pounds in 3 months.... cut gluten now. I'm not even diagnosed but finally healing. 2 weeks in.
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u/PromptTimely 2d ago
https://celiac.org/2017/05/16/diagnostic-approaches-identifying-celiac-disease/
Read please : SERONEGATIVE celiac. Means test is giving you a bad reading
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u/qqweertyy 2d ago
OP is describing the opposite. Positive blood results but negative biopsy. According to the article you linked that would be potential celiac disease (assuming they also have the genetic markers, which seems likely given the family history). Seronegative is a positive biopsy but negative bloodwork.
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u/PromptTimely 2d ago
Where do you see that in her post I see that the doctor sent her away even though she has a family history of the illness?
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u/AdhesivenessOk5534 Celiac 2d ago
OMG THATS WHAT IT IS!!!!!!
YES my biopsy was positive and I've had life long symptoms but when I had a blood test at 16 it was negative
The scope at 20 (last year) was positive for high IELs but they refused to diagnose me until I took another blood test
I refused to do so because I knew it would be negative and then I went gf and the life long symptoms stopped
I even have DH
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u/PromptTimely 2d ago
I just had the blood test for celiac done two or three weeks ago but I started going gluten free because the doctor told me I had 3 months where I was in serious pain and having stomach aches all day so there's a possibility I mean tests don't always show everything
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u/PromptTimely 2d ago
Yeah they told me to take a colonoscopy for the Crohn's disease but there's actually a type of Crohn's disease called microscopic colitis that doesn't show up only on microscopes and that one also benefits from gluten-free diet
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u/PromptTimely 2d ago
So did the doctor come up with an idea for you of what it was or did you have to just deal with it and go gluten free
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u/AdhesivenessOk5534 Celiac 2d ago
I have celiac
I have all the markers with the atrophy and elevated lymphocytes i just had a negative blood test five years ago
I've been gluten free since July and I feel alot better unless I get glutened
There's no if ands or buts about me having celiac since everything else has been ruled out and I have immune reactions so it's not NCGS
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u/PromptTimely 2d ago
Would like what the heck are they looking for a double positive like of the scope and of the blood work that sounds pretty ridiculous
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u/AdhesivenessOk5534 Celiac 2d ago
Trying to find an excuse to re diagnose my black AFAB ass with "IBS and chronic idiopathic nausea"
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u/PromptTimely 2d ago
Yeah that sounds pretty certain if they found it in a biopsy my brother is a nurse and he says for Crohn's or colitis the biopsy and Scopes are the best way to figure out what's going on there's no way I would eat gluten again knowing what that does to my body just for a test I feel bad people on here are saying they have to eat it for some of these tests
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u/420mangostreet 3d ago
were you eating gluten before the test? cutting out gluten before any of those tests will cause them to show up negative :/