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Poor and Inconsistent Medical Follow-Up Common in Celiac Disease

Celiac.com 09/07/2012 - Many people with celiac disease will tell you that getting a proper diagnosis is just part of the battle. Maintaining a strict gluten-free diet, and getting adequate medical follow-up care can be nearly as challenging as getting a proper diagnosis.

Photo: CC--tjmwatsonA group of researchers, led by Joseph A. Murray, MD, AGAF, of Mayo Clinic, confirms that assessment in a new study. The study appears in Clinical Gastroenterology and Hepatology, and shows that follow-up care for patients with celiac disease is often poor and inconsistent.

For their study, researchers collected data on 122 patients diagnosed with celiac disease between 1996 and 2006 in Olmsted County, MN. The patients were 70 percent women, and averaged 42 years of age.

The researchers then calculated the rates at which patients were given follow-up exams from six months to five years after celiac disease diagnosis.

Of the 113 patients the study followed for more than four years, only 35 percent received follow-up analyses that met AGA guidelines. The other patients did not receive medical follow-up that met "even the most lax interpretation of current guidelines,” said Dr. Murray.

The researchers used the Kaplan-Meier method to estimate event rates at 1 and 5 years. They classified patients according to categories of follow-up procedures recommended by the American Gastroenterological Association (AGA).

The study shows that even with widespread circulation of follow-up recommendations, plenty of patients are not getting proper follow-up for celiac disease.

According to Dr. Murray, gastroenterologists with the expertise in celiac disease need to encourage active follow-up of celiac patients and improve their overall quality of medical care.

Basically, says Dr. Murray, celiac disease "should not be different from other chronic conditions for which medical follow up is a given such as liver disease, inflammatory bowel disease or even gastroesophageal reflux disease."

Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,” Murray adds, pointing out that it is important for doctors and patients to understand the need for proper medical follow-up of celiac disease.

The authors note that, since gastroenterologists are leading the way in the detection of celiac disease, and since it is a chronic condition, with possible long-term complications, improved communication between gastroenterologists and patients can help to ensure that patients get important follow-up care, and thus improve outcomes in celiac disease.

What are your thoughts? Do you feel that you've gotten adequate follow-up care for your celiac disease? Share your comments below.

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50 Responses:

 
Madonna
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said this on
07 Sep 2012 12:17:47 AM PST
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.

 
Libby Sykes
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said this on
10 Sep 2012 2:12:19 PM PST
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.

 
cecelia
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said this on
11 Sep 2012 4:08:20 AM PST
ALL of my information since diagnosis found incidentally - took my medical to teaching hospital's Gertiatrics Department for unrelated concerns, did not mention last years sudden onset of horrendous bout of never diagnosed stomach ailment. My then MD did routine bloodwork, treated me for dehydration, PYLORI (HPYLORI bloodwork was negative), ordered abdominal scan, then basic endoscopy done by gastroenterologist who found inflammation of stomach lining. Did not biopsy or look at small intestine. Went another year with pain, etc. - stopped complaining as I felt I was being looked at as a hypochondriac. Due to history of thyroid and family history of Hashimoto's in my daughters, the geriatric MD ordered celiac test - POSITIVE. Repeat endoscopy - this time small intestine biopsied - viii flat, "scalloped", 100% am celiac. Sent out with diagnosis, referral to nutrionist which I cancelled as I already have gotten my information in detail on line from people who have gone through the process, books, cookbooks. I have a Nov. 30th appointment with an Endocronologist at the teaching hospital who treats my daughters (due to the autoimmune blood test numbers). She is also a patient advocate and will help me to get whatever followup I need in conjunciton with Geriatric practice. I was stunned by diagnosis. Angry for long time MD's failure to diagnose and bewildered by enormity of changing my life at age 66. After 3 weeks on the diet, I felt better - at six weeks over the anger, depression, fear. the Gastroenterologist that repeated the endoscopy but including small intestine said he will be interested to see how stomach inflammation also responds to celiac diet.
In summation I agree that follow up or guidance through the process is lacking. Diagnosis is lacking. I could have been diagnosed a year ago! I feel with current medical care in place I will get the necessary followup - primary, endocronologist, gastroenterologist. BUT I will continue to read, look for websites, what are other celiacs finding out. What do I need to ask/advocate for. One last thing. A nine year old granddaughter was tested due to my diagnosis and carries the celiac disease gene! She has had stomach issues since birth.

 
Mary
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said this on
10 Sep 2012 5:20:04 AM PST
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.

 
Donnie
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said this on
10 Sep 2012 6:06:30 AM PST
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.

 
Constance
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said this on
12 Nov 2012 8:47:15 PM PST
My symptoms match yours plus 14 miscarriages. The only one that held (due to a lack of folic acid) was the last. My sister suggested that I try going off gluten for a while - both brothers "had" celiac. So did I. The pregnancy took. Eventually I read the book after so many other symptoms. Alas, after the endoscopy, no celiac. Unfortunately the MD I saw was so celiac that he seemed to wish to abandon me. Oh well. Who knows. At least you got the diagnosis. Now you have to stick to the diet. It's a pain. At least you know.

 
John R. Green
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said this on
10 Sep 2012 7:10:03 AM PST
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.

 
Marge Ransom
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said this on
10 Sep 2012 7:38:18 AM PST
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?

 
Helen
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said this on
10 Sep 2012 7:54:14 AM PST
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.

 
pepper
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said this on
10 Sep 2012 8:08:13 AM PST
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.

 
Luann Brown
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said this on
10 Sep 2012 8:57:35 AM PST
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!

 
Susan
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said this on
10 Sep 2012 10:17:29 AM PST
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.

 
Nancy
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said this on
10 Sep 2012 11:17:29 AM PST
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.

 
A J
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said this on
10 Sep 2012 11:32:22 AM PST
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.

 
George Stewart
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said this on
10 Sep 2012 11:51:28 AM PST
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.

 
Wendy
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said this on
10 Sep 2012 12:45:25 PM PST
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.

 
Josie
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said this on
10 Sep 2012 1:32:58 PM PST
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.

 
Christine
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said this on
10 Sep 2012 2:06:16 PM PST
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!

 
Bill
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said this on
10 Sep 2012 2:14:27 PM PST
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.

 
Barb
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said this on
10 Sep 2012 3:13:10 PM PST
I agree, I am figuring this out on my own.

 
Thelma
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said this on
10 Sep 2012 3:22:15 PM PST
I would love to have a follow up but noone seems to know anything about how to do it

 
Barbara Ross
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said this on
10 Sep 2012 3:46:36 PM PST
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.

 
Allie
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said this on
10 Sep 2012 3:54:04 PM PST
"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)?

 
Julie
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said this on
10 Sep 2012 3:54:36 PM PST
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.

 
Nancy Mac Mullen
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said this on
10 Sep 2012 4:27:11 PM PST
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.

 
Bluerauderfan
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said this on
10 Sep 2012 4:29:20 PM PST
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.

 
Katie Campbell
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said this on
10 Sep 2012 4:50:38 PM PST
The reason I said this article is so good is because of what it doesn't say. Even if you are testing positive, (and really what sort of tests are there, what medicine is there to take?) will elimination be the only cure? At this point of having this disease for 10 years, I have found the only way to stay safe is to watch what you eat and read as much as possible so that you can be educated about the topic.

 
Leah Johnson
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said this on
10 Sep 2012 5:57:12 PM PST
I have received no followup care from my gastroenterologist since being diagnosed with celiac disease in early January 2012. I point blank asked him when he needed to see me again and he said, "I'll let you know, just eat gluten free and you will be fine". I was hospitalized in January and February due to complications with the celiac disease (neurological problems, difficulty swallowing, dehydration and weight loss). Still no followups to check to see if I am absorbing enough nutrition. I asked my local doctor to please run a test to see if my body was reacting to other foods like it does to gluten, gave her the information where to get the test, etc., and she still does not see the importance of it and has not ordered the test! It is frustrating and I do feel like if I want anything done, that I just have to do it myself.

 
Cheryl
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said this on
10 Sep 2012 6:18:34 PM PST
I agree... follow up? What is that? I've never had a doctor say anything about follow up... I don't even know what follow up would be. It's been almost 2 years since my celiac disease diagnosis and none of my doctors even discuss it with me, other than to ask if I'm sticking to the gluten-free diet. I still have stomach problems.

 
Katrina
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said this on
10 Sep 2012 6:18:54 PM PST
My gastroenterologist told me I had celiac disease and that was it. No explanation (I was familiar with it because my sister has it), no suggestions, no anything - just "you have celiac disease." He never mentioned ever seeing me again. And you can bet I won't ever go back to him.

 
Robert
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said this on
10 Sep 2012 6:51:46 PM PST
I have been diagnosed for 7 years and no follow up, blood tests, etc. even suggesting that I need continued follow up care. Thanks to this article, i will seek a doctor that treats celiac disease long term. I have, up to now, considered it my total responsibility.

 
Debbie
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said this on
10 Sep 2012 8:11:08 PM PST
Admittedly, I've been a difficult case. Celiac disease has resulted in seizures, visual anomalies, painful neuropathy and joint pains, in addition to the gastrointestinal difficulties. Also, I cannot tolerate most gluten-free foods without triggering devastating and painful symptoms that will last 4 to 6 months. My Midland Texas gastro told me there wasn't a doctor anywhere in the West Texas area that could help me. He adamantly suggested that I go to a diagnostic hospital (Scott & White of Temple, TX) for further testing. Not having any insurance, I told him that that was impossible for me to do. With the 3rd insistance for me to go to a diagnostic hospital, I asked him why and what he thought they might find. His response: "It will be something genetic and something autoimmune." Doesn't that define celiac disease fairly well?!I thought that was his way of dismissing (aka dumping) me. I haven't been back to him since--almost 3 years ago. I have gotten to the place that I seldom want to discuss this illness with doctors. Frustration is an understatement, and I feel medically abandoned and alone. It is no wonder to me that many do not follow through with consistent medical care.

 
Linda
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said this on
10 Sep 2012 10:29:41 PM PST
How typical! Australia is NO better! my local general practitioner even prescribed me medicine containing gluten, despite knowing I'm a coeliac! They just don't care. If the medical condition doesn't affect your doctor they don't care about your condition. Money is all that matters! I nearly died before I was finally diagnosed! It took more than 13 YEARS of my push, push, pushing and finally I told a gastroenterologist what test I wanted! Was he a humble man when he came out of surgery! Let's hope my battle with him helps someone else. Mind you, he still wasn't sure if i had Crohn's disease or coeliac disease! Great medical care, eh?

 
A. Walters
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said this on
10 Sep 2012 10:37:23 PM PST
Follow up? I had to find out I was a celiac on my own. (I heard a radio broadcast on it and immediately ceased eating gluten, which resolved my symptoms.) For years, doctors had just shrugged when I complained about my symptoms (many of which, including dermatitis herpetiformis, are classic celiac symptoms). After my discovery, I told my doctor, who nodded and suggested I go back to eating wheat so she could test me. I declined. I repeatedly have to educate my doctor about life, gluten-free. She relies on me to let her know what she should do. With help like this, you can see why I don't often go to the doctor, for anything. I've been doing this successfully since 2005--so I can't see the harm in it--but I wonder at the fate of patients who are not as highly motivated, or who may not have the skills I have in doing all the necessary research.

 
judy
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said this on
11 Sep 2012 2:09:05 AM PST
Yes, I researched and gave info to our general practitioner to get my husbands dermatitis herpetiformis and coeliac disease diagnosed. He had no idea and asks now what we want him to do. General practitioners need major education on this common issue. Coeliacs are not just hypochondriacs.

 
Kathy
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said this on
11 Sep 2012 5:31:46 AM PST
Follow up care? No type of follow up care has ever been mentioned. I saw the gastroenterologist once when he did the endoscopy, but after a call to confirm the results he never recommended I return for anything. It seemed to be "goodbye and good luck". I've been pretty much on my own.

 
Cathy
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said this on
11 Sep 2012 5:57:39 AM PST
My GI doctor basically gave me the option to follow a strict Gluten free diet when he diagnosed me with celiac disease.

He wasn’t knowledgeable at all and he was actually surprised that I had celiac disease as my symptoms were not as typical as what he knew.

I walked out of his office feeling sort of lost. I had the help of the internet and my dietitian and the Celiac Association. He did not mention anything about follow up.

My dietitian was willing to check my vitamin levels regularly and suggested I get tested for osteoporosis. I’m glad she did because I found out I have osteopenia. Other then that, how do I even go about ensuring that I’m getting proper follow up?

 
Linda
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said this on
11 Sep 2012 6:10:11 AM PST
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.

 
Gale
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said this on
11 Sep 2012 6:31:55 AM PST
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.

 
Harriet Rimell
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said this on
11 Sep 2012 7:00:55 AM PST
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.

 
Kris
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said this on
11 Sep 2012 7:33:41 AM PST
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.

 
Sharon Kees
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said this on
11 Sep 2012 7:49:35 AM PST
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.

 
Terri
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said this on
11 Sep 2012 11:49:53 AM PST
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.

 
Cindy
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said this on
11 Sep 2012 12:12:40 PM PST
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.

 
Sheila
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said this on
11 Sep 2012 12:16:42 PM PST
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.

 
sandy
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said this on
11 Sep 2012 5:05:13 PM PST
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?

 
Mary C. Dorchester
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said this on
24 Sep 2012 12:53:10 PM PST
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!

 
DrS
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said this on
08 Oct 2012 8:34:16 AM PST
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?

 
Julie
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said this on
18 Oct 2012 8:44:39 AM PST
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...?

 
Sue
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said this on
29 Dec 2012 8:31:22 AM PST
Great article. It is so true that there is no follow up care and the doctors do not care about it, or maybe they don't know how to proceed because the waters are uncharted. More and more people are being diagnosed daily. I hope that the future brings change. I sure hope so.




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