Celiac or other?

[paulabear88]

I recently had a biopsy that came back "suggestive of Celiac". What does suggestive mean? Could it be other things instead? My only symptom is gas and bloating, nothing else. I guess I've come to terms with having Celiac but am afraid of something else. Wouldn't I have worse symptoms if it was something else? This is all new to me, and I am very scared.

[trents]

Yes, it could be something else. We know that certain medications such as anti inflammatories, PPIs and some blood pressure drugs damage the small bowel villi like celiac disease does. 

Edited October 8, 2020 by trents

[Scott Adams]

In medical terminology "suggestive of Celiac" means probably celiac disease. Can you share your blood test results? This would give us far more information to try to help you.

[paulabear88]

33 minutes ago, Scott Adams said:

In medical terminology "suggestive of Celiac" mean probably celiac disease. Can you share your blood test results? This would give us far more information to try to help you.

Thank you so much for your reply. I did not have blood work done yet. I was scheduled in 2 weeks but have decided to put them off, go gluten free, I am desperate for relief. I figure I would go rethink everything if I don't get a good response from gluten-free after say a month. Sound like a good plan you think?

 

[Scott Adams]

In general it's better to get tested before going gluten-free, however, if you find relief on a gluten-free diet and are not one to need a formal piece of paper to keep you on a the diet for life, then a formal diagnosis may not be necessary. There are disadvantages to a diagnosis, for example higher life insurance and possibly health insurance premiums, but advantages include follow up care if you need it later. Having a diagnosis might keep you from wondering a few years down the road if you ever really had it, and perhaps causing yourself harm by eating gluten again.

[Awol cast iron stomach]

My 2 cents having done a gluten challenge. It is better if they are on track for diagnosis to continue with small amounts of gluten now. Knock this testing out now! It is really hard on the body based on my experience to reintroduce gluten. It aggravated other issues for me. I still struggle to get control of of my nervous system/orthostatic issues 4 years after my challenge. I was gluten-free for 3 years the first time and had found some quality of life and stability.

I had been misdiagnosed for 20 plus years, so I went gluten-free hoping to stop the issues I was having. I had a research article about some formerly diagnosed IBS patients actually being Celiac or NCGS. I realized that is me! Was I doing the lifestyle as strictly as I should (like I learned on here from the members after I joined and my challenge,-honestly No! Lots of misleading info out there)

While I am a parent and had to know my issues for the sake of my kids. I felt better the first elimination round. I have 3 health care professionals who currently explain that the orthostatic issues/autonomic nervous system were likely around earlier (the challenge didn't cause them) though it did "wake the lion for me that I struggle to get back in the cage".

Finish the path to diagnosis especially if you have a team or Dr on the case/suspect. I knew I had issues at 5, went to Dr's in my early 20's, then in my 30's tried again as things got worse for me. They all failed. A team of clinicians didn't take me serious until my 40's. So here I am now. In the scheme of things giving up gluten and additional food intolerances while trying to rebuild stability of the ANS I am reminded often it is mild compared to what could have happened if the team didn't put all the pieces together for me in my 40's.  That no autoimmune issues were found, I have my gallbladder, not diabetic, and cancer free. On good days I accept this.

Good Luck