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What Post Diagnosis Tests Should Be Done Yearly?

sparkles

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sparkles Contributor
sparkles
Posted

Some place (not sure if it was here or not) but there was a list of tests that should be done yearly if you are a celiac just to make sure that everything is working right. If you know of any such list, please let me know. I have a regular MD (internist) and I am sure that I know more about celiac's disease than she does. Does anyone see another kind of doc? I also have diabetis. Just curious... Thanks.

  • 4 weeks later...
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au natural Newbie
au natural
Posted
Some place (not sure if it was here or not) but there was a list of tests that should be done yearly if you are a celiac just to make sure that everything is working right. If you know of any such list, please let me know. I have a regular MD (internist) and I am sure that I know more about celiac's disease than she does. Does anyone see another kind of doc? I also have diabetis. Just curious... Thanks.

I am not sure of a list of post diagnosis test, i imagine your doc would be wise enough to give you a thorough look over. I have been diagnosed with severe chronic idiopathic neutropenia. For this i see an oncologist. I am unable to maintain a healthy white count. It is not cancer related. I did have my thyroid removed a few years before my diagnosis - had a low thyroid all my life- it finally got to the point that it was choking me. They found cancer starting. I do have other food allergies though, egg whites, dairy, codfish and peanut. Id say ask for a full exam. It seems that alot of celiacs have at least one more thing wrong. lets hope that you dont have anything else. By the way my father was diabetic starting in his 50s. So I watch for it like a hawk. good luck

courtnxy Newbie
courtnxy
Posted

I think your antibodies are supposed to be tested every 6 months to a year, but I suppose it depends on how well-controlled you are.

Also, you could get checked for deficiencies in iron and vitamin D. I'm deficient in both of them! Plus, celiacs are supposedly also prone to vitamin A and K deficiencies.

One more thing: If your symptoms don't clear up after a year or two, you should talk to the gastro doctor about getting an EGD, where they can check out the lining of some of your intestine.

Courtney

flagbabyds Collaborator
flagbabyds
Posted

i get antibody testing and then just a CBC.

julie5914 Contributor
julie5914
Posted

I was wondering the same - I have my one year anniv. on the diet checkup on the 16th and am not sure what the point is. I have symptoms some still and would like to know for sure that I am healing, but I don't necessarily want an endoscopy. Last blood test was 6 months ago and was still pretty high even though I'm very strict. Sometimes they look at you like, "what are you here for," and I am thinking "aren't you supposed to know that?" I don't have any major complaints except some dwindling symptoms that I expect I may be stuck with - just want to make sure I'm on the right track - is that worth an expensive visit to the doc?

olalisa Contributor
olalisa
Posted

Check out this website.

Open Original Shared Link

The NIH seems like a pretty good source to me, and I printed this info and took it to my GP, who has ordered all the tests they recommended, including testing my blood for all the nutritional deficiencies. I go for the bone density on Monday.

Good luck!

chrissy Collaborator
chrissy
Posted

we run the Ttg test on our kids. our doc is willing to just call the test order in to the lab if we want so that we don't have to drive the long distance to his office.

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      Guinness, can you drink it?

      By Rogol72 · Posted

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Guinness, can you drink it?

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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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