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Mother recently diagnosed

CasselsNonnie

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CasselsNonnie Newbie
CasselsNonnie
Posted

Hello! I'm Angela and my mother, Marie, was recently diagnosed with celiac disease. She is 72 and breaks out in 'shingle-like' blisters and rashes whenever she eats the slightest bit of gluten. She is ridiculously stubborn and I need help getting her on a gluten free diet. I'm looking for a support group that actually meets in person. Mom isn't computer savvy. At. All. We live in the Tulsa, OK area. I've told my Dad to find her a gastroenterologist if he can. The closest one that specializes in celiac disease is in OKC, 2 hours away, so we are going to try local first. ANY advice would be super helpful. 

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squirmingitch Veteran
squirmingitch
Posted

How was your mom diagnosed? Did she have the blood tests? Did she have an endoscopy with biopsies?

I'm not sure the Tulsa Support Group is still active but you can email or call & find out. Here are some links:

Open Original Shared Link

Open Original Shared Link  Call the library & ask if they still meet there

Open Original Shared Link

Also read our Newbie 101 in the Coping section - it's pinned to the top of that section

All first degree relatives should be tested every 2 years in the absence of symptoms & immediately if symptoms present since this is a genetic disease. One MUST be eating gluten every day for 3 months for the blood testing.

CasselsNonnie Newbie
CasselsNonnie
Posted
  • Author

Thank you so much! I will check out the info and definitely visit the Newbie forum. I'm trying to do this on my phone and it's not the best for searching this site.  Momma was diagnosed by blood test. I didn't realize that I should be tested as well. I will mention that to my doctor next visit. I appreciate your response. I think the Tulsa chapter may no longer be meeting, the link I found through the CF didn't work but I will try yours as well. Thanks again!!!

cyclinglady Grand Master
cyclinglady
Posted

Subscribe to a few of the gluten free magazines.  My 82 year old Aunt reads those all the time.  There is always something on celiac disease and lots of recipes and tips too.  A few books from the library would be good too.  

gluten-free girl 67 Apprentice
gluten-free girl 67
Posted

This can be very hard with a person being diagnosed at this age. When I found out I had Celiac 6 years ago, I told my mom she should get tested. She refused, saying she couldn't LIVE without bread. I was shocked. My sister and my kids got tested and they are all negative. Sometimes people will just refuse to change eating habits. Maybe if she eats gluten-free and feels better, she will understand.

squirmingitch Veteran
squirmingitch
Posted

Here's a link for the Newbie 101 thread.

 

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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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    • 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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