Advice - Finding a good Dr.

[Spacepanther]

Long story short, I carry the genes and have been having misc symptoms related to gluten. I went to a gastroentrologist and went through blood testing but I was gluten free - told her I was gluten free - it came back negative.  I felt like she dismissed it as a possibility and daignosed me with IBS. 

Only recently, I learned that I should have been eating gluten. Moreover, I could be considered a weak positive. So I would like to get a second opinion.

Does anyone know of any good doctors in the Chicago area - Of course, UChicago's Celiac Clinic but they are certainly out of network. 

[trents]

You say you could be considered a weak positive. Can you supply the actual antibody test numbers along with their ranges for negative vs. positive?

Did your symptoms improve when you went gluten free? Did you go back on gluten and then the symptoms reappeared or did they reappear while you were striving for gluten free? This part is not clear to me from what you wrote.

[Spacepanther]

I am looking for referrals for good drs in the Chicagoland area becuase I went gluten free a few years ago and felt good. About two years ago, I started having bouts of extreme abdominal pain which was accompanied by joint pain, bloating, tenesmus and gas. I went to a gastroentrologist who tested me and preformed a colonoscopy and diagnosed me with IBS. Since then I have continued to have symptoms joint pain, bloating, constipation, fatigue and brain fog. Because of my continued symptoms, I decided to seek a second opinion.

I was scheduled to see another gastroentrologist who specializes in celiac and sent my records. I asked the office if I should start eating gluten because I thought my results were suspicious since I was gluten free. The office staff checked with the Dr. and she indicated that my blood tests were a weak positive and I could go ahead and start gluten again for additional testing (she didn't indicate biopsy or blood).   tTG-IgG 30 u/l and tTG-IgA 5.6 u/l - total IgA 162. IgE positive for wheat, barley and rye. 

I am doing my best to keep my appointment with her because she seems great. I just didn't realize I was out of network which sucks because I have been having some pronounced symptoms since starting gluten. Specifically, heartburn, nausea, bloating, gas, constipation, joint pain, tenesmus, fatigue, brain fog, tingling in my feet, a couple episodes of abdominal pain and one episode of tenesmus.

Ideally, she knows a few Drs. who are likely in network for me and I continue to consult with her and my results. 

[trents]

15 minutes ago, Spacepanther said:

 The office staff checked with the Dr. and she indicated that my blood tests were a weak positive and I could go ahead and start gluten again for additional testing (she didn't indicate biopsy or blood).   tTG-IgG 30 u/l and tTG-IgA 5.6 u/l - total IgA 162.

These numbers are from the original testing I assume? Please include reference ranges for negative vs. positive so we can get a better idea of the strength of these results. There is no industry standard. Different labs use different ranges.

 

 

[trents]

26 minutes ago, Spacepanther said:

About two years ago, I started having bouts of extreme abdominal pain which was accompanied by joint pain, bloating, tenesmus and gas. I went to a gastroentrologist who tested me and preformed a colonoscopy and diagnosed me with IBS. Since then I have continued to have symptoms joint pain, bloating, constipation, fatigue and brain fog. Because of my continued symptoms, I decided to seek a second opinion.

 

You started having this abdominal pain, joint pain, bloating tenesmus and gas while you were still eating gluten free? Are you now back on gluten and if so, how long now?

What did this gastroenterologist test you for and how? Were tests done specifically for celiac disease at this time? Celiac disease cannot be diagnosed by a colonoscopy. It doesn't go up high enough. Celiac disease affects the small bowel.

Sorry, I'm just having trouble following the sequence of things from the info you have supplied so far.

[Scott Adams]

This might be the place to go:

https://www.uchicagomedicine.org/conditions-services/gastroenterology/celiac-disease#:~:text=World-Class Celiac Disease Care,as co-existing autoimmune conditions. 

[Maggie12]

On 5/20/2023 at 12:28 PM, trents said:

You say you could be considered a weak positive. Can you supply the actual antibody test numbers along with their ranges for negative vs. positive?

Did your symptoms improve when you went gluten free? Did you go back on gluten and then the symptoms reappeared or did they reappear while you were striving for gluten free? This part is not clear to me from what you wrote.

I would like to ask a question but I’m not sure where to do this. I had bloodwork done and showed a 15 for gluten when it should be less than 2. I am not sure how high 15 is considered? I’m scheduled for an endoscopy and colonoscopy in July. I constantly burp throughout the day. Before I cut out gluten I was bloated and my face seemed inflamed too. I just don’t know if constant burping is a symptom?

[trents]

Welcome to the forum, Maggie12!

Yes, burping can be a symptom of celiac disease, at least indirectly. There are a number of gut issues often found in conjunction with celiac disease such as low stomach acid.

Were you already on a gluten free diet when you had your blood work done? That can drive test numbers downward. And if you are scheduled for an endoscopy in July you should not be eating gluten free yet, assuming they will be doing a biopsy of the small bowel lining to check for celiac disease. Can you confirm that they will be doing a biopsy? Celiac disease produces inflammation which damages the lining of the small bowel (the "villi"). The inflammation produces antibodies which can be measured in the blood. This damage to the villi can also be seen microscopically. That's why they do a biopsy in conjunction with the endoscopy. Going gluten free before blood antibody testing or before the biopsy allows the small bowel lining to heal which reduces antibodies and also eliminates the damage the otherwise might be seen from the biopsy.

[Maggie12]

I was not gluten free before I had the bloodwork done. I went to the doctor because of symptoms I was having and she said it sounds like a gluten intolerance. The GI doctor did mention doing some biopsies. If I stay eating gluten till now August 4th they changed the testing wouldn’t that cause more damage in the meantime? What other digestive problems could cause the burping?

[Scott Adams]

If you have undiagnosed celiac disease or non-celiac gluten sensitivity and keep eating gluten it could cause damage and increase various health risks, but if you want a formal diagnosis it’s the only way to go.