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Jinxy'sMom

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Jinxy'sMom Newbie
Jinxy'sMom
Posted

Hi to all. My name is Heather, and I am expecting to get a celiac disease diagnosis shortly. I had some tests done at the beginning of the year, the IgA and IgG were mildly positive, but the tTg and the rest were neg. At that point I had no symptoms other than a vitamin B deficiency for years and years. I have in the last 6 months developed what appears to be DH - it looks exactly like the pictures I've seen. It comes and goes, but seems to be staying for now. Based on what I've read, I think my case is relatively mild since it's only a little itchy. I'm going in to see my GP on Friday to ask for a referral to the gastroenterologist. I don't think it's necessary to have the skin rash biopsied, since most things seem to be pointing to celiac disease. I also have T1 Diabetes which I understand is a risk factor.

Does anyone think I should see a dermatologist as well?

Much as I would rather not have ever heard of celiac disease, I have learned that it's best to face up to health problems and deal with them straight up. I look forward to becoming an active member and making some new friends.

Oh, and that's my Jinxy in my avatar, ain't he a handsome fellow?

Jinxy's proud mom

Heather

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lovegrov Collaborator
lovegrov
Posted

Actually, a DH diagnosis might be less expensive, easier and less invasive. According to all the celiac experts, if you have DH you have or will have celiac. The recent NIH consensus conference on celiac even wrote into its report that a biopsy is not necessary for anybody diagnosed with DH because that in itself is a diagnosis of celiac. And the prescription is the same -- go gluten free.

richard

Jinxy'sMom Newbie
Jinxy'sMom
Posted
  • Author

That's interesting, Richard, thank you for your reply.

I'm obviously not as informed as others, but I'm concerned because I've read that quite a few folks get misdiagnosed from skin biopsies not being done correctly. Right now the rash isn't too bad, but I want to get rid of it as soon as possible. When I ended things w/ the GI earlier this year, he wasn't opposed to an endoscopy and I kinda feel like it'd be best to have a concrete diagnosis, plus, who knows how long this has been going on? What if there are some cancer cells in there? Wouldn't it be wise to check just in case?

Jinxy'sMom

lovegrov Collaborator
lovegrov
Posted

If your doctor wants to do the endoscopy to check for other things as well that would be between you and him.

A warning that the small bowel biopsy isn't always accurate either. Doctors take too few samples or the samples they do take miss the damage or the lab can even misread what they get.

richard

Jinxy'sMom Newbie
Jinxy'sMom
Posted
  • Author

Definitely food for thought. I have to wonder, though, if my ins will cover my gluten-free sessions w/ my dietician if there's not an absolute dx of some kind.

Guess we'll see on Friday. This'll be pretty much the first time I've met this doctor.

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

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    • 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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