First GI doc visit

[Joan14]

Hello all - Good to have a community! Last December, I got diagnosed with hypothyroid. Around same time, started symptoms (digestive, exhaustion, bloating) that led me to self-diagnose gluten and dairy sensitivities. Always have had stomach issues, but none as bad as this. Then made a big mistake ... stopped all gluten and dairy. Solved the problems - totally. Did celiac blood test - negative (as I understand this will very likely happen as I had been gluten-free for 2 months). Also my brother has celiac. Just went to GI doc two days ago. I was very surprised that his feedback was totally different than everything I've heard/read. Said it wasn't hereditary, the blood test will give markers even though I had been gluten-free, and I don't need to "know" whether it is celiac. To have test done, I'd have to eat gluten for at least 2 weeks - and I really don't want to....it affects me so much. Bottom line, he says, if you know it's celiac, you'll eat gluten-free; and, if you don't know, you'll eat gluten-free. So end of discussion. I was shocked...and would love your inputs on whether you've heard any of these medical thoughts?

[trents]

"Said it wasn't hereditary, the blood test will give markers even though I had been gluten-free"

These two statements are incorrect. While it's true that having celiac genes does not ensure that you will develop celiac disease (about 40% of the population has one or both celiac genes but only 1% of the population develop celiac disease) it does establish the potential and it does increase the likelihood that you will develop active celiac disease compared to the general population. So, it kind of depends what the GI doc meant by "it's not hereditary". It takes both the genetic potential and some kind of triggering stress event to move from potential to active celiac disease.

Also, there is somewhere between a 10% and 44% chance of developing active celiac disease if a first degree relative (e.g., a brother) has celiac disease. Research results vary widely on this probability but a recent study done by Mayo Clinic found it to be 44% and it was a large study involving over 300 people.

However, he is absolutely wrong about being gluten free before testing not affecting blood test results. How long had you been eating gluten free before the blood test?

[Wheatwacked]

2 hours ago, Joan14 said:

if you know it's celiac, you'll eat gluten-free; and, if you don't know, you'll eat gluten-free.

In this statement at least he is right.  It doesn't matter if you have Celiac Disease (10% of population diagnosed), very likely with your brother or Non Celiac Gluten Sensitive (10% of population diagnosed). Wheat does you wrong.  The general approach to it, according to the Merck Manual, is a gluten free diet and address vitamin and mineral deficiencies. So with a positive diagnosis many doctors will tell you GFD and send you on your way, and a negative test they may say it is all in your head. Not much help. A nutritionist experienced with Celiac would be more helpful. Harder to deal with is the general perception that Gluten free living is simply a life style choice and not a disease. Ie., the effects on social life. Check out the link below to Gluten Centric Culture

Celiac Disease (Gluten Enteropathy) Merck Manual Professional

Treatment of Celiac Disease

• Gluten-free diet
• Supplements to replace any serious deficiencies
• Supplementary vitamins, minerals, and hematinics may be given, depending on the deficiencies. Mild cases may not require supplementation, whereas severe cases may require comprehensive replacement.

 

 

 

Edited August 25, 2022 by Wheatwacked

[trents]

Yes, Wheatwacked is correct. At the end of the day whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, total abstinence from gluten for a life. These two share many of the same symptoms and it is not necessarily true that NCGS is just unpleasant and inconvenient but will not do harm to your body in the long run. For example, NCGS can generate neurological problems for some people. And some experts believe NCGS can be a precursor to celiac disease. We have a clearer understanding of celiac disease than we do NCGS as far as the immune system pathway involved.

Edited August 25, 2022 by trents

[Joan14]

On 8/25/2022 at 12:18 PM, trents said:

However, he is absolutely wrong about being gluten free before testing not affecting blood test results. How long had you been eating gluten free before the blood test? 

--I had been eating gluten-free for almost two months. 

Thank you for your other responses. They are consistent with everything I have seen, and quite the opposite of the GI doc. I'm hoping that they come out with a test that would reduce or eliminate the time I'd have to eat gluten before the test. 2 days might be ok...but definitely not 2 weeks!

[Joan14]

Thank you - a visit to a nutritionist is a good idea, as I hadn't thought about the deficiencies that factor in.

[trents]

1 hour ago, Joan14 said:

 

The Mayo Clinic recommends being on gluten for 6-8 weeks before antibody testing so that may have been long enough to give valid test results.

[ChaplainMeg]

On 8/25/2022 at 4:56 PM, trents said:

The Mayo Clinic recommends being on gluten for 6-8 weeks before antibody testing so that may have been long enough to give valid test 

I'm so grateful to have found your site!  My doc told me to eat whole wheat toast every day for 3 weeks before testing.  I read an article that said should be at least 2-12 months.   Well, after 2 weeks I was cramping and bloating so much worse than before stopping all gluten etc.  I have very bad spinal diseases with lots of inflamation but during these 2 weeks my back felt like it was breaking from increased inflamation etc.  I had full intention to get to be able to test but couldn't t handle the pain.  My upper right sided pain got me Ct's, ultrasounds, biopsys etc. Of course with no diagnosis.

So I know I have every symptom there is for Celiacs, and cousins with it.  Do I really need to have the doctors diagnosis?  It seems like they couldn't do anything different to help me anyway!  I'll just go back to being mindful of my limitations.   

Thank you for the advice of supplements and seeing a nutritionalist.  P.S. just had vegi pizza on coliflower crust and salad but had a huge attack so not sure what thats about, maybe dressing?

Thanks everyone I sure can use this helpful site!

[trents]

Welcome to the forum, ChaplainMeg! I am a retired chaplain (healthcare) myself.

No one actually needs an official diagnosis of celiac disease. Those in the UK can receive government assistance to offset the cost of gluten free prepared foods but other than that, an official diagnosis may be helpful to some people for remaining disciplined in their gluten-free eating or in some social contexts where it might help family and friends to be more cooperative and less skeptical. Whether you have celiac disease or NCGS the antidote is the same: life-long abstinence from gluten. There is no testing for NCGS. Celiac disease must first be ruled out. But NCGS and celiac disease share many of the same symptoms and NCGS is 10x more common.

[Joan14]

I did discuss with my primary. She, on almost every point, did not agree with the GI doctor's feedback. So, back to square one. My question was the same as ChaplainMeg...and I asked my primary again - do I NEED to know whether it is celiac or NCGS. She agrees that the solution is the same - abstinence from gluten. She did so that since celiac is an auto-immune disease that one may be more susceptible to auto-immune diseases. and, she emphasized MAY.

On the pizza and salad - any soy sauce (like in salad dressing?). Many soy sauces include gluten. Also was the crust packaged or made at home? Any airborne flour? I have found that I react to something that I hadn't expected, that gluten is present in some obscure place that I hadn't considered.