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Celiac Testing Event, Salt Lake City

Nantzie

By Nantzie
in Publications & Publicity

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Nantzie Collaborator
Nantzie
Posted

I came across this today. It's not in my area, but thought I'd put the word out here. If anyone goes, let us know how the food was. :)

Nancy

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Free testing for gluten intolerance

The Salt Lake Tribune

Article Launched: 04/24/2007 12:00:00 AM MDT

Correction: Free testing for gluten intolerance will take place May 19 at Wheeler Farm. A Tuesday headline incorrectly cited a different disease.

Up to 500 people can pre-register to receive free testing for celiac disease - or gluten intolerance - on May 19, at Wheeler Farm.

The testing is offered as part of the Utah Gluten Intolerance Group branches' annual walk and awareness event, which will run from 8:30 a.m. to noon. "Walking Feet Without Wheat" includes a 1K trail walk, food booths and a gluten-free breakfast with waffles, breads and pancakes.

Wheeler Farm is at 6351 S. 900 East, Salt Lake City.

Participants in the free screenings must fill out a three-page medical release, due by Monday. Blood testing will begin at 8:30 a.m. and conclude when the 500 test kits, donated by Prometheus Laboratories, Inc. and Binding Site, are depleted.

"This is an affordable opportunity for people who suspect they have celiac disease to be tested," said Marcie Coda, Salt Lake City Gluten Intolerance Group branch manager and event coordinator.

Blood will be drawn by licensed health care workers.

Registration for the event is $16 for volunteers, $18 in advance, and $20 the morning of the walk. Registration and medical forms are available at www.gfutah.org or at Wild Oats Markets.

The Gluten Intolerance Group's mission is to increase awareness of celiac disease, an inherited autoimmune disease that can cause malnutrition. Lifelong abstinence from gluten in the diet is the only treatment. To learn more, go to www.gfutah.org.

Major sponsors are Wild Oats Marketplace, Against the Grain, Blue Chip Group, Celiac Specialties, Pamela's Products and St. Mark's Hospital.

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gfp Enthusiast
gfp
Posted

Just out of interest.. but will the results be shared?

Will they be taking DNA samples for testing too?

Not that it would stop me but I would be interested, given the location to see if the results will end up in the mormon genetic database? Indeed, it might actually be a good thing since they seem to have the time, dedication and will to maintain this and allow people to access it.. but Im just curious.

pinktroll Apprentice
pinktroll
Posted

"The mormon genetic database??" Do you mean the geneology database? I've been a mormon my whole life and I live in SLC and I'm pretty sure there is not a "mormon genetic" database. It made me laugh though-thanks!

Nantzie Collaborator
Nantzie
Posted
  • Author

Yes. Geneology is finding out about your ancestors and where came from. Usually looking up old census records, newspaper articles, marriage, birth and death certificates, etc. It's big in the US since many of us aren't sure. In Europe it's not something most people seem to do because you generally know.

Unfortunately here, especially in the early to mid 20th century, people tended to sweep any family foreign influences under the rug in an attempt to become more Americanized. Very sad really because a lot of families lost touch with their cultures.

Nancy

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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