Doctor

[KimmieG]

I need a doctor. I'm living in central Indiana. I need a celiac specialist doctor who can properly diagnose me. Most doctors here are ignorant. I have been living in limbo for 25 years with negative results. I have gotten 100% of the issue now pointing to celiac according to celiac.org screening even a first degree relative. I do not care how far I need to travel to find a celiac research doctor or celiac specialist doctor who can test me properly. Help please. Do you know a doctor?   

[Scott Adams]

There are experts at the Mayo Clinic in MN, and at the U. Chicago:

http://www.cureceliacdisease.org/ 

Since it runs in your family, and you seem to already know that you have issues with gluten and may have celiac disease, can I ask why it is so important for you to get an official diagnosis? To get this you will need to eat at least 2 slices of wheat bread daily for 6-8 weeks before the blood tests, and for 2 weeks before an endoscopy.

[KimmieG]

10 minutes ago, Scott Adams said:

There are experts at the Mayo Clinic in MN, and at the U. Chicago:

http://www.cureceliacdisease.org/ 

Since it runs in your family, and you seem to already know that you have issues with gluten and may have celiac disease, can I ask why it is so important for you to get an official diagnosis? To get this you will need to eat at least 2 slices of wheat bread daily for 6-8 weeks before the blood tests, and for 2 weeks before an endoscopy.

I have been frustrated and humiliated by many doctors for 25 years and some not believing me and here I am pooping all the time. I want respect from my doctors. But the Doctors are not giving me respect, the correct information and not caring. I did not realize it all. I have a new doctor now who believes me, but he doesn’t know how to help me. When I find help for myself it is pure luck. I take a medication called Cholestyramine for Oral suspension USP that causes constipation.  And my new doctor told me to eat only meat and stay off of fiber. I have been eating gluten for a long time now because I gave up. But I cannot eat oats or barley. Oats go right through me and barley makes me walk sideways. I have Hashimoto thyroiditis. I read if a patient has Hashimoto’s thyroiditis the blood test for celiac disease does not work. Is this correct? My new doctor recently had me take this test. The celiac blood test was negative. And the many times I took a biopsy for celiac, I was eating gluten free. I cannot educate doctors and will not try. I have Gerd and my esophagus has been sore for years. Since the doctor has ordered a look at my esophagus I also want another celiac test. I want a good doctor.    

[Scott Adams]

If you have been eating gluten daily you could also order an online blood test from https://imaware.health

I think you know that many of your symptoms, including possibly your Hashimoto's thyroiditis, could diminish greatly on a gluten-free diet, but it would be best to do any testing for celiac disease before you go gluten-free. If you do have celiac disease and continue to eat gluten it could lead to many health issues and related disorders.

[GF-Cate]

On 8/29/2022 at 3:29 PM, KimmieG said:

I read if a patient has Hashimoto’s thyroiditis the blood test for celiac disease does not work. Is this correct?

I don't believe this is accurate, however there is thought to be a common genetic predisposition between Hashimoto's and celiac (both are autoimmune diseases).

On 8/29/2022 at 3:29 PM, KimmieG said:

The celiac blood test was negative. And the many times I took a biopsy for celiac, I was eating gluten free.

Even if you have had negative blood results for celiac in the past, if you have celiac genes & are genetically susceptible, you can develop it at any age. When was the last time you had celiac blood testing? 

Also make you you let future doctors know that you were eating gluten-free when you had those biopsies performed, so they understand that may have caused false negative results.

It is also possible you have NCGS (non-celiac gluten sensitivity) or something else. Unfortunately, there is no testing to diagnose NCGS. Once celiac and wheat allergy are ruled out through testing, it is a diagnosis of eliminating other things and then trying a gluten-free diet. Putting it in remission requires the same as celiac - a 100% gluten-free lifestyle (and I would say also healing the gut/microbiome and correcting nutritional deficiencies after years of GI distress). 

As for doctors, this Indiana practice looks promising:

Michiana Gastroenterology (South Bend, Plymouth & LaPorte) https://www.michianagastro.com/service/celiac-disease

and Gluten Free Indy has some doctor recommendations: http://www.glutenfreeindy.com/find-a-doctor.html

Hope you can figure out what is going on and find some relief. 

[KimmieG]

Thank you all. I wonder if a doctor can figure it out. I feel as I have a condition no other human has ever had but I have 100% of the celiac symptoms. I had the celiac blood test last month and it was negative. I am very whinny today feeling sorry for myself. I have poop drainage and an off and on pain in my lower right back. I am sick at my stomach. I have indigestion. My primary care doctors have given up. What is odd is I am hungry this morning. I will go drink almond milk because dairy gives me horrible reactions.  I will eat gluten-free toast also. Then go back to bed and hopefully feel better by 8 am.