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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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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