Poor and Inconsistent Medical Follow-Up Common in Celiac Disease

There is no thought as to the impact of this disease. I even had one doctor say, "why are you doing this if you do not have intestinal problems?" It is difficult even to convince our family physician that this is a "major" disorder and needs to be considered in all aspects of my health. Even health insurance will not pay for a consultation with a dietitian. If a person is diagnosed with diabetes there are all kinds of help: monitors, cook books, consultation with dietitian, etc. This diagnosis at the very least warrants diet consultation.

Same experience as Madonna: my primary care doctor is monitoring my osteoporosis and vitamin design levels, but no celiac follow up at all from GI doctor.

Thank goodness I had nurses training in my youth. I see a physician regularly for checkups yet I had to diagnose my own celiac disease. I had to go through 3 physicians to finally get treatment for bowel obstruction from all of the inflammation and 4 physicians to confirm a diagnosis and get treatment for primary biliary cirrhosis. I realize that medicine is as much art as science and even excellent doctors are not perfect. The problem is education and public awareness of this disease so doctors will automatically check for it like they do your heart, lungs and other systems because it is so common and can be so devious and devastating.

I am the one to initiate follow up care. When I show my doctor (at the GI clinic where I was diagnosed) what lab tests are recommended, she often won't do them because "they aren't necessary." I've had to ask for thyroid tests, a bone density scan, hemoglobin A1c, and other tests.

When I ask when I should return (I know it should be yearly), I'm told, "come back if you don't feel well."

So far, I'm not convinced there's a doctor out there who really knows what to do with celiac patients.

I'm absolutely sure I know more about celiac disease than my doctor.

I found that it was very important for me to do my own research and be very proactive in my own care. I feel fortunate that my gastroenteroligist was astute enough to check me for celiac after my diagnosis of anemia. But once he found it, I asked, "who gives me follow up care?". He said my general practitioner would. I do have annual visits with my gastroenterologist and he is always interested in my care, but he admitted that after only a couple of months, that I knew more about celiac disease than he did. My GP was even more in the dark, but blessedly he is happy to do all the labs that I ask for, and he has also run certain labs on me based on intuition, and those labs have come back needing supplementation. My b1 and b2 were both so low as to be unmeasurable even though I had been gluten-free for 1 1/2 years. He has a open mind and listens to what I ask, which is very helpful, but bottom line is that I had to do my own research and initiate my own care. At least I don't have to deal with a unwilling doctor as well.

I too have had no follow up with my gastrointestinal doctor. She told me I would not have to be seen again. I guess they think since the diet corrects it, we don't need any more medical care.

In 2006, age 53, I was diagnosed with celiac disease, thanks to my daughter pointing me in the right direction. I was gravely ill. She knew of a family with celiac disease.

My history is anemia since my 20s, even on iron. At age 48 diagnosed with osteoporosis because I asked my nurse practitioner at the time, why my blood calcium was low and what it meant. She ordered a bone scan. Severe gas and abdominal pain for decades, occasional diarrhea.

In 2006, when ill, I asked my physican if it could have celiac disease. She immediately ordered the blood test, which was positive, and printed off info on the gluten-free diet to get me started. I saw a dietitian as well. The endoscopy with biopsies confirmed it. My villi were all flat.

The same local surgeon, (who specializes in gastric surgery), and did my biopsies recently told me I was the ONLY celiac he had diagnosed in the past 6 years! He was talking my mother out of an endoscopy when she was symptomatic and lab work had an elevation. She's 80 and didn't really want the scope. His attitude was condescending to me (I'm a nurse who asks questions and gave some information). He said it "isn't genetic and is rare." I was seething quietly, wondering how many people he had missed?

My celiac specialist in Iowa City said I don't need any followup unless I have problems. No one has ordered labs or anything to check on the disease.

I have had to be proactive in my self-education and have shared articles with my physicians, but have not been bold in requesting tests. I believe I need to change that. Yes, we DO know more than the doctors.

I agree there is no followup - my doctor said "oh, that is a bad thing to have" but never brothered to find out anything or send me to someone you knows what to do for a celiac. I have not had a followup and was diagnosed in 2007. My doctor said as long as I feel okay then everything must be okay. I agree that there does not seem to be a doctor that knows anything about Celiac disease or that wants to find out about it. I get asked the question often by health care workers: "how sensitive are you to gluten and can you just have a small amout and be okay?" I thought that even just a crumb was bad, so what do they mean by that? I feel like I know more than any of the health care workers I have seen, including doctors.

Follow up care is important to the person with this disease. If only you can find a specialist in your area. It seems since I was diagnosed, the doctor that I see seems to be ordering celiac studies on more people. I feel that it is not taken seriously as a disease but more as an unfortunate circumstance. Since my diagnosis, I have been reading about celiac disease but there is always conflicting info about what is and what is not gluten-free. How can we trust food makers and preparers that know very little about our needs? If the medical society is not whole-heartedly behind us, then who is there to trust and believe for our own daily and medical needs?

In 1993, dermatitis herpetiformis erupted and I went to the doctor, who sent me to a dermatologist, who told me it was all in my head! I should go see a shrink! I said, "No!" He said, "There are two forms of tests I could order -- the prick test, which is expensive, and the elimination test, which requires discipline for it to work but is free." I said, "Let's go with free." He sent me to his nutritionist across the hall. A smart lady, she laid out the ellimination diet, which determined I was both gluten and corn sensitive. Since then, I've been on my own. Never had a biopsy, wouldn't now because I refuse to go off the gluten-free diet. I read a lot, self prescribe vitamins, and stay away from anything which has corn or gluten in it. I would like to work with a doctor who knows about the condition, but so far haven't. Incidentally, both my brothers have the same condition, even down to the corn. And one brother had Non-Hodgkins Lymphoma. Fortunately, he's in remission -- for 5 years, so far.

I really appreciate hearing from all the folk who have responded above!

I see that nearly everyone has had no follow-up, but I don't see that anyone is talking about what they want at follow-up.

Do they just want the doctor to check and see if their symptoms are better? Do they want to see if their labs have converted to negative?

What would you want at a follow-up visit?

To doctors: as a newly diagnosed celiac patient, I think the question of "What do we want," is a bit of the problem. We don't necessarily know what we want because we don't know what we NEED. Gluten-free is not as easy as, "Don't eat the bread". If my intestines don't heal, which research is showing doesn't happen as much as was once assumed, then what? How do I know if mine healed? How do I know if I am getting the calcium I need? Are any other issues starting as I am now considered more prone to other autoimmune diseases? Early diagnosis helps and we are getting no help or guidance and are leading our doctors!! We are often being chastised for wondering if we are okay. Even gluten-free cookbooks encourage us to "not tell" if our food is gluten-free because others won't know the difference. Live in shame, hide this!! When we are seeing a doctor, having the same attitudes prevail ruins trust and can have very harmful effects. I don't know what follow up I need, or when. I count on my doctor to have that information, or to find it-not to act like gluten-free will be enough. What if I THINK I am gluten-free but continue to have exposure unknowingly? Without some testing I will be unaware until years down the road. After the osteoporosis is diagnosed, maybe at that point, when it is too late, someone might find this to be worth investigation? At the very least shouldn't a yearly blood test be encouraged? Looking at antibody levels, nutrient levels, etc...?