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Possible Celiacs - How To Go About Getting Diagnosed?

smpalesh

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smpalesh Explorer
smpalesh
Posted

I have had health problems for years and have ended up diagnosed and treated for GERD, IBS, and a variety of other health issues. I have been diagnosed with fibromyalgia and chronic fatigue syndrome. I had my gall-bladder removed in 2004 at the age of 25. I have almost all of the symptoms of celiac disease and I have been getting sicker over the last few months to the point that I can barely function. Here is my list of symptoms:

abdominal bloating and pain

chronic diarrhea

constipation

floating stool

severe fatigue

bone/joint pain

tingling numbness in hands and feet

itchy skin rash (I think it is likely DH) that occurs on my knees and backs of my elbows. Here is a picture of the rash on my knees (this was a month ago, it is currently not active but it comes and goes and lasts for months and is insanely itchy!). It also gets much worse look than that as well. 540486_10150823816231314_514286816_n.webp

I'm sure there are other symptoms but I can't think right now

Blood tests that have been done over the last few years have shown chronic vitamin D, vitamin B, and vitamin K deficiency. I have low iron and also abnormal liver enzyme results (but no one has ever looked into the liver results). Despite taking a ton of multivitamins and iron supplements the numbers do not improve.

Basically I feel horrible all the time. I am barely able to function and my poor kids aren't seeing much of their mom because I am in bad almost the whole day (thank goodness I have a supportive husband). So can I just walk in to the family doctor's office (I am in Ontario, Canada) and ask to be tested for celiac? It seems that everyone on here has had a horrible time getting doctors to test for celiac and I don't understand why. If a person has all the symptoms why wouldn't a doctor just want to order a simple blood test?

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guest134 Apprentice
guest134
Posted

The celiac blood panel is 125 dollars and is not covered by OHIP. Go in and get it, you get the Tgg IgA, total IgA and both deamidated peptides, I did despite my doctors constantly saying it was a waste of time and money, I had odd results that are indicative that something is going on and now they are finally giving me the proper tests to find out. One tip I will give living in Ontario or Canada in general is be aggressive and vigilant, who cares if the doctors roll their eyes at you and what not, because you are not paying directly they will avoid at all costs giving you proper tests or referring you to a GI. They first told me my sickness back in June would go away only to find out I had Salmonella Typhoid which caused colitis and has caused other complications do to their neglect (might have celiac now). If I would have listened to them I probably would have died or been very sick right now so do not let them brush you off like nothing if you feel like it isn't.

smpalesh Explorer
smpalesh
Posted
  • Author

How did you get them to order the test? Did you just ask them?

The celiac blood panel is 125 dollars and is not covered by OHIP. Go in and get it, you get the Tgg IgA, total IgA and both deamidated peptides, I did despite my doctors constantly saying it was a waste of time and money, I had odd results that are indicative that something is going on and now they are finally giving me the proper tests to find out. One tip I will give living in Ontario or Canada in general is be aggressive and vigilant, who cares if the doctors roll their eyes at you and what not, because you are not paying directly they will avoid at all costs giving you proper tests or referring you to a GI. They first told me my sickness back in June would go away only to find out I had Salmonella Typhoid which caused colitis and has caused other complications do to their neglect (might have celiac now). If I would have listened to them I probably would have died or been very sick right now so do not let them brush you off like nothing if you feel like it isn't.

guest134 Apprentice
guest134
Posted

How did you get them to order the test? Did you just ask them?

I went into a clinic until I found a doctor who would give me it. They are pretty reluctant to give the tests as many in this province regard them as useless. Just go in and say you are willing to pay for it and want to get the celiac panel done.

nvsmom Community Regular
nvsmom
Posted

There is always the biocard home test that you could order. It is a ttg Iga test. When I saw my doctor about celiac, I came in carrying my positive biocard test and it was no problem (I am in Alberta).

captharv Newbie
captharv
Posted

I have had the most itchy rash on forearms, wrists, elbows on and off for 3 years. I also have severe osteoporosis of the spine and was put on Oxycontin for pain about the same time rash started. After being on 4 different pain meds without any results, trips to ER, no relief. Three months ago the rash started from my knees down than to the outside of my thighs and back. Last ER visit my wife insisted on a blood screening. Lab results were back within an hour.........ER doctor states all looks normal. After giving me yet another Prednesone shot, some cream and Prednesone RX my wife asked for a copy of the lab report. Next day my son looks it over.......four of the numbers were at the highest and lowest of the normal range. Armed with this info and photos of my rash my son stumbles on 'The Gluten Rash' Dermatitis Herpetiformis - Skin Rash From Gluten!!!! I stopped Gluten intake a week ago and it is amazing how quickly the rash has cleared and how better I feel. My son is not in the medical field but armed with blood test results, pictures and Thinking Outside the Box be found my problem!!! I hope my story helps at least one other person.....we have to be our own doctor sometimes.

IMG_0092.webp

harvsarms.webp

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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.

      By Jane02 · Posted

      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! 
    • knitty kitty
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      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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