Celiacs! How Often Do You See Your Doctor?

Chinese Hospital

So you’ve been diagnosed with celiac disease. Now what? Did you return for a followup? Do you meet with your doctor regularly to ensure you stay healthy or do you only call up your doctor when something is wrong?

When I was first diagnosed three years ago my doctor recommended that I return a year later for a followup biopsy to ensure I was properly healing on my gluten free diet. Personally I chose not to get the second biopsy. Prior to my diagnosis I had all the textbook symptoms of undiagnosed celiac disease and the first biopsy found damage to my villi. I was feeling 100% better since going gluten free and didn’t feel the need to undergo another procedure which isn’t a very nice experience.

My doctor did however do various followup blood tests a year later to ensure everything was back to normal now that I was on a strict gluten free diet. Before diagnosis I was anemic and my liver function levels were abnormal. There were other abnormalities too but I can’t remember all of the details. These followup blood tests showed that everything was back within the normal range.

Last year when I moved to the US and registered with a doctor here, she ran various blood tests during my physical, tests which are apparently normal to run on celiac patients. Everything came back within the normal range except my iron, which is still pretty low but not anemic low. (I take multi vitamins every day which seems to do the trick)

Recently a visit to the doc showed that my thyroid levels were low, as seems to be the case with many celiacs, and now I’m taking thyroxine every morning to try to get it back to normal. Are you being checked for this kind of thing, or perhaps other auto-immune related issues?

To what extent have you followed up after your celiac diagnosis?

Do you have annual blood tests to ensure your levels are within the ‘normal’ range?

Did you have a followup biopsy to ensure you are healing on your gluten free diet?

Do you have you vitamin/mineral levels checked to ensure everything is normal?

How do you know you are staying healthy? Do you judge your health on how you feel rather than what your blood results say?

I’d love to hear about your experiences of following up with your doctor after your celiac diagnosis. Share your thoughts and experiences in the comments below..

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Comments

  • I’m so bad in this department. I developed a lot of anxiety around doctors because of a history of them completely misdiagnosing me (both a Western Medicine doctor and Bastyr, a highly regarded naturopathic clinic in Seattle). I wrote about it here: http://bit.ly/ynB55B

    Because of misdiagnosis, I spent 3 – 5 years in a lot of pain and sickness, and then an additional 2 years not thinking I have Celiac Disease and with no guidance about how to deal with things. Now when I go to the doctor for any reason, I cry. I’ve even cried at a receptionist a couple of times. It has made it really hard for me to find a doctor in the Bay Area since moving here last year.

    I know I’m still borderline anemic, which was a problem I had pre-diagnosis. I’ve completely lost faith in a doctor’s ability to give me any sort of quality feedback or direction when it comes to healing or getting to the root of my problems.

    *sigh*

  • Great post Laura! I actually never went back or did blood test to check either, I’m sort of like you and I know I’m a hell of a lot better. My Doc did ask me to come back a year later to check my bones and the blood etc, as I moved country (again!) I never got round to it. I’m just back from a trip home and went to the doctor twice to stock up and basic medicines (inhalers etc) but never once discussed celiac, I guess I just live with it now and don’t bother bringing it up :)

  • Geri Gregory

    Feb 5th, 2013

    I have had no follow up my Dr he would not even set up with a diatetion to help me navigate the diet all I have learned has been on my own and I have found a great natural path who follows my progress I get very angry with the poor care I get from my primary care Dr

  • I was diagnosed with Celiac in 2002. My GI doc just set me up with a dietician initially, but nothing long-term. Only follow-up with him is for my 5 year colonoscopy and last year I had to go in to discuss some ongoing problems with questionable supplements. He said to eliminate everything and add each back one week at a time. Otherwise, that’s it. My internist/primary doc is uneducated when it comes to Celiac. I have had to suggest tests and regular blood monitoring. She only has a superficial knowledge of Celiac Disease.

  • After my first biopsy I was told to go on a gluten free diet. My doctor gave me some web site for information. Six month later I had my 2nd biopsy and was told things had improved. He didn’t say anything about coming back. This was in Jan. 1999. I have wandered about my health level. My headaches didn’t start until after I went gluten-free. Later that year I got a sinus infection that just didn’t want to go away and have had sinus problems ever since then. I neven had sinus problems before going gluten free. A year later I was told I had hypoglycemia. I never had health issues until I went gluten-free. Recently I was told my thyroid is low and I’m now on medicene for that.

  • I am mum to a boy of 8 who was diagnosed by biopsy in February last year. Again, there was loads of care and guidance at first, but after being diagnosed, we were told that there is no follow-up care except a strict gluten free diet. We went to visit the doctor because our child did not seem to be gaining weight and was having intermittent nosebleeds, and complained of always feeling hungry. We wanted a test to check that we were not letting gluten slip into his diet. Having had a blood test, we awaited the results and asked about the antibody levels and if they had dropped. The doctor simply said that he had not checked for antibodies but that his iron levels had come up! All we want, having spent a year with our son on a gluten free diet is confirmation that it is working! If you cannot get this, how do you know that you are not doing him harm by giving him foods he loves but which are doing him damage. That, as a parent is hard to accept and unfair , given that a simple test result would give you a boost of confidence to battle on for another year! :-(

  • After reading the other comments I feel really lucky. My son is 7 and was diagnosed three years ago this July. It was first caught very quickly by his pediatrician with a blood test. She immediately got us in (within 2 weeks) with a pediatric GI who scheduled a biopsy. Once Celiac was confirmed we met with the doctor again and a nutritionist who gave us a ton of information and contacts (ROCK) for more information.

    Both our pediatrician and the GI want to see him annually for just blood tests. There won’t be any need for a biopsy unless they see an abnormality in the blood tests. I feel like we’ve been getting a lot of great treatment and support.

    And yes, we will continue to get the annual blood tests. I feel good about how well he’s growing and thriving, but I always worry that something could be slipped in without our knowledge and the blood tests can help remind us that we’re on track.

    Jane: If you’re not getting better treatment I say get a new doctor. It’s too important

  • I also was sent to a dietician, which was a MISTAKE. She was awful and kept mistaking gluten for SOY (her son had a soy allergy). More than once, I told HER that her recommendation was not GF!
    I did go for a decascan to make sure everything was okay, and it was. I was lucky that my Celiac was caught early enough that I didn’t seem to have too much long-term damage.
    My GI doctor wanted annual follow-up, but it was really pointless. It’s like if they don’t have medications to prescribe, they don’t know what to do. And when I started having additional GI problems, he pretty much said I must be getting gluten from not being careful (I was NOT.) when I asked him to do additional testing to see if I was havin problems with other grains (it was a sime food intolerance test), he said he wasn’t comfortable and wanted to refer me to an allergist, and them said he can’t delve into this because he has people with cancer (who are clearly more important than my silly issues.) he almost made me cry. So needless to say, I have not been back there.
    I insisted on getting annual labs from my PCP every year at first to make sure my level (thyroid, glucose) were okay, but I let that slide after a few years. I should get it done again, but my PCP also seems to not worry since a GF diet is the only treatment.

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