Celiac diagnosis: GF, but still have abdominal pain, what next?

@dkess69 Welcome to Mayo Clinic Connect. You’re being treated for celiac disease but are still having symptoms—correct? Have you also been tested for lactose intolerance? While we wait for others members to see your posting, i posted this link: it may have some more good information for you.
Celiac disease - Diagnosis and treatment - Mayo Clinic https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Have you been able to meet with a dietician who specializes in gluten-free diets?

@dkess69, I'd like to add my welcome. I've added your question to the Digestive Health group as well to get members from that group to join the conversation too. While we wait for others to offer their experiences and tips, you may be interested in reading this older, but relevant discussion:
- Celiac Disease - gluten free and no improvement https://connect.mayoclinic.org/discussion/celiac-disease-gluten-free-and-no-improvement/

What does your GI suggest as the next step of investigation to confirm or rule out IBS and/or celiac?

I'd like to add @yellowdoggirl to this discussion. She has celiac and may have suggestions too.

Hi!
First, I would say it's very important to consult with a Registered Dietician. With a biopsy diagnosis, your insurance may cover it. RD's know an amazing amount and can be very helpful, especially in finding hidden gluten and cross- contamination. Wooden utensils, a scratched pan, crumbs or mixed use cutting boards, etc.
Depends how sensitive you are.
Symptoms can be from something else, too. IBS is a clinical diagnosis, not a lab diagnosis. Lactose intolerance is another. I bought OTC lactaid tablets and they help a lot.
Start with an RD. Some grocery stores employ one for free access to their customers. That was my first encounter with one. Toured the store with me!
Bring a list of questions!!
It's more complicated than people realize.
I hope you feel better soon!

My GI had three stool tests run looking for evidence of inflammation. All three tests came back normal. Bloodwork was also run for homocysteine and C-reactive protein which was normal. Blood for vitamins and nutrients was also normal. Colonoscopy, CAT scan all normal and ultra sound of gall bladder, liver and pancreas were normal. Celiac was diagnosed through antibody test and endoscopy biopsy. Celiac genetics test came back positive category 8 (extremely high)

I have met with a dietitian/nutritionist to discuss a GF diet and cross contamination issues. I will be meeting with an allergist in 2 weeks and am working on setting up a second opinion with a different GI doc. My current GI doc discussed putting me on Pamelor which sounds a little bit scary. I asked about short term use of Prednisolone to calm things down but he was not in favor of that. My GI track is having a hard time settling down. I also asked GI doc about the camera capsule but he was not liking that idea either. I will continue the GF diet but can’t wait for the rib pain, back pain and abdominal cramps to go away!

@dkess69 - My 2 adult daughters have celiac disease. Both also have developed significant food allergies.
It sounds as if you have a severe case. Did your GI give you any idea of how long recovery is? Since the small intestinal villi are flattened, there could be malabsorption of other nutrients too. Lactose was mentioned, there are also different type of sugars that could be affected causing gas pain.
It’s a good idea to see an allergist. Celiac disease is an autoimmune disease and may coexist with other autoimmune illnesses and allergies.

My GI doc only said that the symptoms should improve over time with a gluten-free diet. He said my blunting was mild. My PCP thinks I’ve developed IBS and has put me on Bentyl which seems to help. I’ve had back pain on both sides of my back at the lower rib cage area. I also have pain and tenderness in my sides that comes and goes. I also seem to have to get up more to urinate at night. (2-3 times). I don’t have any burning or blood in my urine. My GI doc is going to have another Celiac antibody test run next week. The first test 3 months ago had a 1:40 result. He also talked about putting me on Pamelor. It’s all very frustrating!

Bentyl calms the intestines for me- I have IBS, too, along with motility problems and past history of autoimmune GI disease.
I assume your doctor would use Pamelor to test your pain?

I don’t understand what you mean when you say “using Pamelor to test your pain?”