Inadequate Follow-up After Celiac Diagnosis


Celiac followup doctor appointmentIf you’re ‘lucky’ to have had an official celiac diagnosis, do you feel as though you have received adequate follow-up from your doctor?

Follow-up care is important for testing for t-TG antibodies, ensuring vitamin and mineral levels are normal and anything that tested abnormally prior to diagnosis has gone back within the normal range. It’s also important to ensure that patients are sticking to and coping with their strict gluten free diet. Recent research suggests that the follow-up care celiac patients are receiving is often inadequate and inconsistent.

Researchers at the Mayo Clinic in Minnesota collected data on 122 patients with biopsy diagnosed celiac disease between 1996 and 2006 to look at what kind of follow-up, if at all, they received between 6 months and 5 years after diagnosis. Patients were classified according to how the American Gastroenterological Association (AGA) categorizes follow-up procedures.

From 1 to 5 years after diagnosis, the number of people receiving follow-up appointments decreased each year. Of the 113 patients who were followed up for more than 4 years, only a third of them received follow-up to the level recommended by the AGA.

Personally, I received a follow-up one year after my diagnosis. I had bloods done to check my iron levels and liver function were back to normal but I’ve never been tested for antibodies or had my vitamin and mineral levels checked. Three years into my diagnosis I don’t get any kind of follow-up at all.

What kind of follow-up did you receive after your diagnosis? Do you receive adequate check-ups or are you left to cope with it on your own?

23 thoughts on “Inadequate Follow-up After Celiac Diagnosis”

  1. I have had zero follow up since 2010 when I was diagnosed. I even asked if I need to follow up with a doctor and they said no. I’m actually switching doctors, and I’m hoping that this new doctor will be able to recommend follow up since it does concern me that I got the diagnosis and was left to fend for myself.

  2. I was diagnosed about 12 years ago. The follow up I think most important is vitamin and mineral levels. Although my gut is healed, I still need supplementation to get enough vitamins, especially B vitamins. The good thing is, for the water-soluable vitamins, including the B vitamins, you can’t really take too much of them.
    The gluten also took my thyroid. You should be checked for that when dignosed in case you need an endocrinologist follow up. Thyroid damage may not improve after going on the diet.
    I’ve often thought the follow up biopsy is a waste of time and money, unless you don’t get better on the diet and have non-responsive gluten-sensitivity. What are they going to tell you? Do a better job on the diet? By deifinition, you’re already doing your best be eat GF, and you probably know when you don’t. If you cheat on your diet, why are you bothering to go to the doctor, anyway.

  3. I was diagnosed in 2005 and have had yearly follow-ups with a gastro every year since. Blood work every year and have had a bone scan as well (at 35). Everything is as expected so no follow-up endoscopy/biopsy after the first two.

  4. I have had no follow up at all, and I feel like they don’t even ask me about how it’s going. I’m actually looking into finding a new PCP.

  5. There is a nutrition office in St. Paul, MN, with several people who have personal experience with celiac disease & gluten sensitivity. They can probably help more than any doctor. Their website is

  6. I was diagnosed in 2007 and have basically had NO follow up. Any good information I received was from my own investigation on the Internet (medical sites and National Celiac Foundation). I even went to a dietician in the hospital and I knew more about celiac disease and a gluten-free diet than she did! I recently switched PCPs so we will see what this one does for follow up.

    What is really frustrating is the lack of knowledge and understanding within the medical community. When a person who has diabetes gets sick, the PCP and other specialists treat this person differently because of the added risk of diabetes. Celiac disease is also an auto-immune disorder but I have not had anyone take this into account when I am ill. They have been treating me like I was a person with no complications, which is not the case.

  7. Wow, I guess I’m really lucky. My PCP has been awesome with my followup and coordinating followup with my gastroenterologist.

    I get my blood work checked annually and have several times had to go on prescription Vitamin D. I also have regular colonoscopies and endoscopies and just had a small bowel series done. They also do periodic bone density exams.

    The nurse practioner in the Gastroenterologists office is great and going through results thoroughly after each test. As a result of the followups I’ve learned how to better manage my acid reflux, that I need to add more fiber into my diet due to diverticulosis and have had a precancerous polyp removed.

    If you’re not getting this kind of care I would switch physicians.

  8. I went years being misdiagnosed with IBS before I figured out I can’t have gluten in my diet. I was never able to find a doctor where I live that would do the tests required to find out if I have celiacs disease so I just went on a purely gluten free diet and felt better. Now my thyroid has stopped working and I am only 29 years old (I’ve been gluten free for 3 years). Does anyone know if there is a link between the two problems? Also, is there any sort of database that lets you search for doctors who take gluten intolerance seriously and provide follow up care?

  9. I was diagnosed in 2002. I got a follow up a month later, than 3 months. than 6 months, than a year and after that nothing. I ask my PCP if there’s any type of maintenance for my celiac disease that I should be doing besides a GF diet and they just look at me like I’m crazy. I feel like there should be some type of follow up yearly to let you know of the new things going on with the disease and if there’s anything that could benefit you and just to check in to make sure you’re doing alright. Cause sometimes I feel like I’m left in the dark to fend for myself since no one around me has the disease.

  10. I had repeat antibody tests 6 months and 1 year after diagnosis. At 1 year also had vitamin and mineral levels, liver function, thyroid, etc. Finally had a bone density scan 1 year after diagnosis which showed mild osteopenia. I’m supposed to have another scan 1 year after that first one after upping my exercise and taking Calcium Citrate w/ D supplements. My doctors really want to scope me again to check healing levels but I’m in no hurry…especially since I’m working with a Celiac savvy nutritionist on some lingering pain issues which are turning out to be new and exciting food intolerances I never had before Celiac did a number on my body. Wheeee! All the docs agree that I need to have the antibody test done every year at my annual physical…plus vitamin and minerals…possibly thyroid. The phlebotomist at my GPs knows me well at this point!

  11. After five hospitalizations in less than a year, my Celiac condition was finally diagnosed. Unfortunately, the gluten-free diet didn’t help — refractory sprue! I went to a research center and gradually got my gut back into more normal processing.

    Because of all this, I “request” frequent follow-ups and receive them. The vitamin levels are especially important. Consulting with a nutritional specialist is very important. It’s frightening to learn how many doctors know almost nothing about celiac disease — even G-I doctors. You have to be your own advocate.

  12. After my dx 2 years ago I get complete bloodwork, including antbodies, every six months by my family physician. He also wanted me to have a bone density test, which I did. He is very much on top of things for which I am grateful. Not sure whether it makes a difference but I live in Canada.

  13. I’m lucky, I have a great PCP and rheumatologist who work in partnership with each other and me. 4 years post diagnosis, I get regular blood work done, bone density scans, regular review of vitamins. My daughters Dr. gave me additional things to check for her and me (ie. blood work to see if you responded to hepitis b shots-she didn’t and is having a second series of shots). So, all in all, I have been fortunate with my Drs.

  14. I was diagnosed in 2001 and the only followup I’ve ever had was when I insisted on having the blood tests run again to be sure I wasn’t getting gluten inadvertently. I’ve had several doctors since 2001. The gastroenterologist told me that celiac was an extremely rare disease and only tested me as an afterthought because he’d run out of things to look for in the search for the source of my (very serious) symptoms.

    A year later I asked my PCP to run the blood tests again as a followup. When they came back clean, she brightly told me that I was “cured” of celiac disease and no longer needed to eat gluten-free! I patiently explained the facts to her, then switched to a new PCP. I just couldn’t trust her after that.

    Kelly, thanks for the comment about supplements. Recently I was in a walk-in clinic (same organization as my PCP) for a completely unrelated issue. After reviewing my chart, the doc started telling me I shouldn’t be taking so many supplements. I started to say it was because I was celiac, and he cut me off and said dismissively, “Are you REALLY sure you have a gluten problem? Did you diagnose yourself?” I looked at him, took a deep breath, and said, “I find that really offensive.” After talking a few minutes, he backed down, but didn’t actually apologize.

    I’ve had other equally crazy, incompetent, or infuriating encounters with medical personnel about celiac disease. With this being the level of knowledge and the attitude in the average medical community, is it any wonder that we need to be assertive in ensuring our own care is adequate? Don’t back down! As celiacs we need to keep doing good research and insisting on what we need. The alternative is too scary.

    1. Joyce – you should check with your doctor to see if this is a recommendation based on a gluten allergy or on his autism

  15. I was diagnosed in 2001. I go every year to be monitored. It is a serious disease that needs to be followed. I am very lucky to live near the celiac center at Colombia Presbyterian Hospital in NYC. I see Dr. Peter Green every September. He is so knowledgeable about the disease and has a nutritionist who also is up to date about gluten related issues. I wish everyone who has Celiac could see him. You will feel like a new person and all your questions will be answered.

  16. My son was diagnosed at 15 and had a wonderful Pediatric GI doctor, unfortunately the doctor passed away. He did follow up blood work regularly and a follow up endoscopy where he saw signs of food allergies which explained while my son was not felling as well as expected. Development of food allergies unfortunately is common with Celiacs. It is very important to know your blood, vitamin and supplement levels. Many who are lowin areas end up taking too much to compensate which can cause major issues, Iron to name one. If your doctor is not an expert in Celiac and willing to listen to your concerns find one that is.

  17. I was diagnosed in 2010 during a normal endo scope. Both my personal doc and my 2 g docs are great. I get blood tests every 4 to 6 months and any questions I have are always answered. Go sharp reese steely san diego. If you are not seeing a doc at least once a year and getting blood work and other tests done, it is time to change health care providers.

  18. Angie, I was diagnosed with Celiac Disease in late december after a endoscopy and blood test.
    I saw my doctor 2 weeks later, so that he could explain everything to me.
    He suggested I meet with a celiac nutritionist, and my next appointment with him is in April.
    I think that this is a problem that should be closely watched. I would definitely find another GI.
    Good luck…

  19. After years of visits and all the tests & meds they tried to push on my then 4 year old son: blood / scope / colonoscopy / pill cam / lactose intolerance / neurologists / antidepressants / reflux meds / all came back negative or ineffective finally realized I had to take control and took him off gluten at age 7, 2 days later saw the results. Has been a totally different kid since then. I informed his gastro dr. she said “oh that’s good” and that was the last I ever heard from her !

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