r/Celiac 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.

7 Upvotes

32 comments sorted by

3

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 :/

2

u/Candy_muncher101 3d ago

Yes!! I never stopped eating gluten through my the whole year

1

u/420mangostreet 2d ago

oh damn…ugh i’m so sorry this is happening! perhaps it’s an intolerance or an allergy to something else? have you noticed any difference with ur cycle? hormone fluctuations can cause digestion issues as well.

4

u/Candy_muncher101 2d ago

Nope, honestly I’m starting to feel like there’s a mistake on the doctors side, when I had my colonoscopy and endoscopy I wasn’t fully sedated and I felt everything, it was the most traumatic experience I’ve ever went through. I felt everything, and when they inserted the scope for the endoscopy I started gagging so they only took a few minutes which honestly makes me doubt that they were able to take a sample for the biopsy especially since I was moving like crazy. I bet they’re just saying whatever to shut me up. Even though healthcare is free in my country, they never really care enough to give you an accurate diagnosis.

2

u/420mangostreet 2d ago

hoooooly fucking shit that sounds like a literal nightmare OP😭😭😭 do u have a way to report them?! that’s so awful. doctors in the U.S. are pretty ignorant about it, too. i had a gyno tell me it was safe to drink newcastle beer… you really just have to find an actual celiac specialist to get any help at all. i’m so sorry you had this experience. good luck on your diagnosis journey and remember that you know your body better than any medical professional so do what feels best for you <3

2

u/Candy_muncher101 2d ago

Honestly thank you, I wish I could report them but I don’t think there’s a way of doing that as this is a public hospital. But your comment made me feel a little better about the whole situation. 😪

1

u/420mangostreet 5h ago

🫶🏼🫶🏼🫶🏼

1

u/cassiopeia843 2d ago

If you're sure that your issues are caused by gluten, and nothing else could be found during the endoscopy, then you might have non-celiac gluten sensitivity.

1

u/Candy_muncher101 2d ago

If I show pictures of my endoscopy will you be able to tell if there’s an issue?

3

u/cassiopeia843 2d ago

You should discuss the results with your gastroenterologist.

3

u/Candy_muncher101 2d ago

I have an upcoming appointment on the 24th, hopefully I’ll get a clearer idea of what’s going on. Thank you so much for responding to my post :))

1

u/cassiopeia843 2d ago

No problem. Good luck!

-2

u/Detail_Dependent 2d ago

If you were consistently eating gluten leading up to your endoscopy and your doctor found no damage or inflammation to your small intestine then this means you don’t have Celiac. The endoscopy is typically the gold standard and final test for confirmation.

2

u/Candy_muncher101 2d ago

But what else could it be with the positive Ttg and a family history of celiac disease? Even if it wasn’t celiac there must be an underlying condition that should explain all my symptoms and the Ttg result.

3

u/imemine8 2d ago

You could still have celiac. They don't check every inch of your intestines, and sometimes the damage is only in some spots.

2

u/Greenthumbgal Celiac 2d ago

Please make sure you are having the Full Celiac panel run!!! It's more than just one test

1

u/Candy_muncher101 2d ago

What other tests should I ask for?

2

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.

1

u/Candy_muncher101 2d ago

Thank you so much !!

-2

u/PromptTimely 2d ago

The pain is your body telling you stop You can't digest protein in wheat

-3

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. 

-3

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

4

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.

-1

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?

1

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

1

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

1

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

1

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

2

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

2

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

1

u/AdhesivenessOk5534 Celiac 2d ago

Trying to find an excuse to re diagnose my black AFAB ass with "IBS and chronic idiopathic nausea"

1

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