Poor and Inconsistent Medical Follow-Up Common in Celiac Disease

What follow up care? I once found an article that explained exactly what follow up was necessary and took it to my doctor. She asked if she could keep it and of course I let her thinking that finally someone would help. Next visit she said she didn't understand what I wanted her to do.

My daughter asked the doctor at Madigan hospital to test her to see if she was getting hidden gluten. The doctor had no idea how to even order the blood test.

Finally found a doctor who moniters my osteoperosis and checks my vitamin levels but doesn't think it's necessary to do a blood test to see if I'm getting hidden gluten.

I really haven't found a doctor that knows much about how to diagnose let alone follow up.

I was diagnosed with celliac disease 7 years ago and have had one followup to see how things are going since then. My doctor seems to think no followup is needed if I follow a strict gluten-free diet. I told him that no matter how closely I watch my diet there can always be hidden gluten in products that I am totally unaware of. You are so right, we more often than not don't get any followup at all unless we stomp our angry feet and demand we get some care on this.

I never got any care for my celiac disease, and certainly no follow up care. I had a very hard time even getting doctors to test me for it, despite the fact that I had suffered with the classic symptoms for all or most of my life. I was always sickly, anemic, short and skinny.

After being diagnosaed with celiac disease and being sent to a nutritionst, I was not made aware of any further followup or care being necessary. Other than following a gluten-free diet.

I agree, what follow-up care? Since my initial diagnosis it hasn't even been mentioned. I'm wondering if it is something Medicare won't cover?

What follow-up care? Our PC agreed with the celiac diagnosis after I found what he had by research of his symptoms. He almost died, after a severe diverticulitis attack and the doctors didn't know what was wrong with him. "Just stay away from gluten" is the only treatment that we know about and was told to do. He was 76, is now 81, and is experiencing loose stools. The new PC is doing stool cutlures for parasites and C-Diff. He also has diabetes, PAD, hypertension, atherosclerosis. and diverticulosis. A dietary challenge for sure! I don't think most doctors know they are supposed to followup celiac disease.

I have had celiac disease for over 5 years. I get no follow up at all. If I ask a question, no answer. The doctor I started with was great, but moved out of area. My regular doctor did say she would check my blood once a year for vitamin levels. With my muscle spasms, I now know from experience what vitamins I need. My doctors are no help at all.

I agree with above. WHAT FOLLOW UP!? I was diagnosed 23 years ago. I was my doctor's FIRST celiac patient and he was THRILLED to have me. He was great and insisted on regular visits. 5 years later, my insurance changed. I have had several serious bouts and ALL the doctors have done VERY LITTLE for me. I really believe they have no idea how to handle someone with 23 years of gluten-free!

This is true of our experience, too. Primary care physicians don't know what to do to assure celiacs of optimal care and follow-up.

So true! Eight years ago, I went gluten-free after suffering, losing 20 pounds, having my gall bladder removed, and having my gastrointestinal doctor tell me nothing was wrong with me and maybe I would benefit from hyphosis. After doing my own research, I went on a gluten-free diet, and was miraculously better within 2 days. When I went to make an appointment with a supposed celiac specialist in the area, I was told I had to wait 2 months. When I finally saw him, he said I had to go back on gluten to give me an official diagnosis. I told him that I would dig a grave and jump in before I would eat gluten. So, he just told me to stay on the diet and released me - no concern for a followup. I think most doctors just don't know where to go with it.

Take a previous copy of the lab test for diagnosis of celiac disease; the tissue transglutaminase IgA antibody test. Take it to your health care provider and "tell" them you want this lab test. Call the lab testing company and ask for the test code. Give this to the doctor and tell them this is what you want. It works for me.

I was self diagnosed with celiac disease at after 40, after 35 years of symptoms. Many general practitioners and specialists did not diagnose the problem over the years.

I have very little follow up care at this point from my gastrointestinal doctor. My PCP checks into my complaints, but related problems such as neuropathy, abdominal pain, and other issues are addressed individually without any coordinated care.