Poor and Inconsistent Medical Follow-Up Common in Celiac Disease

Ha! Follow up? I was diagnosed in 2007 and a new doctor I just got about six months ago mentioned that I should be monitored, but that was the first I heard of it. 5 years ago, the gastroenterologist basically handed me my diagnosis and wished me the best of luck. Suggested I go look at a couple of websites. That's it. I think my doctor now actually is going to do something but I didn't even know there was SUPPOSED to be follow up until recently.

I echo the "what follow up care?" sentiment. Two doctors have said to me that as long as I'm not eating gluten I'm fine. All three of my doctors act like I'm a hypochondriac when I try to discuss what tests I should have and what supplements I should be taking.

I couldn't agree more. If a patient presented with diagnosed heart problems or diabetes, there is immediately recognised attention and follow up. But "'coeliac disease?' It's only a fad." Or "If you go gluten-free you'll open yoursef up to celiac disease," both of which are total rubbish. It's like saying if you cut out sugar you're up for diabetes! However, in the remote West Coast of New Zealand where we moved for my husband's job we discovered a highly competent South African general practitioner who immediately improved my quality of life with his interest and expertise in celiac disease. I am indebted to him and all physicians whose knowledge and empathy allows us to lead a normal life. Thank you!

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.

As far as I know, the only way to know you have celiac disease is to have a biopsy of your small intestine. Mine was not found by multiple blood tests. It was found in trying to determine a reason I was losing my iron and being very anemic. That resulted in having a paraesophageal hernia repair. However, since I was diagnosed with celiac disease, I have followed a gluten-free diet but NO follow ups have ever been ordered by the doctor. I plan to contact him.

I believe that most gastrointestinal doctors don't understand the need for follow up. I agree with the author "what follow up?". Plus not many Internists even understand the scope of the disease. You are on your on and you must be proactive with your own care.

I agree, I am figuring this out on my own.

I would love to have a follow up but noone seems to know anything about how to do it

Follow up? Ha ha. I was diagnosed over 3 years ago and my doctor still doesn't really believe I have anything to worry about. This, after a positive biopsy and almost complete recovery from all symptoms I had been having. I do all my own research and then tell them what to do. It's pathetic.

"Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,†- This certainly matches my experience thus far.

Where can one find the latest follow-up procedures recommended by the American Gastroenterological Association (AGA)?

I was "diagnosed" by my endocrinologist after he observed that my hyperparathyroidism stopped once I went on a gluten-free diet and vitamin D therapy, and that my osteopenia improved. The blood tests he had given me were inconclusive, but the other evidence persuaded him that gluten was the problem. I see him every six months, and he does blood tests to make sure all is well.

I certainly agree. I really feel most patients have to learn on their own with little guidance. Follow up may be a long year ahead. Hopefully you are following the diet carefully. Thank goodness for sites like this.

My daughter had problems. The nurse called to tell her she had celiac disease. NO follow up, NO scheduling with nutritionist... nothing. As a mother, it makes me upset to see how this is treated. Most auto-immune diseases cause outlaying problems. This is the way she found out about it: vitamin deprivation, hair falling out, etc.