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Clan Thompson


celiac3270

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celiac3270 Collaborator

I was trying to think of something new I could share and....

I just started getting the free Clan Thompson newsletter a little while ago. They also have Open Original Shared Link I just thought that some here who don't already subscribe might be interested. Clan Thompson also has great pocket sized product books (w/ phone #s so you can verify and the date of verification. You can see the format at the bottom of the newsletter where they have some of the recently verified products). I got the booklets for free last year--in a sample, I think.

Also, here is an example of a newsletter-- actually, the last one. Sorry, it's kinda long:

The Clan Thompson Celiac Newsletter

Issue #65 January 21, 2005

Copyright 2005 by Clan Thompson

All rights reserved. Subscribers may print copies of this newsletter for others to read or send copies to their friends as long as the ENTIRE publication is printed or sent along with all copyright notices and attributions. Sending and/or printing excerpts is not allowed without written permission.

To learn more about celiac disease, visit us online at: Open Original Shared Link

To subscribe to this newsletter: Open Original Shared Link

****************************

In this issue:

1. News: "SAFE LEVELS OF GLUTEN" - What Does It Really Mean?

ECONOMIC COMPARISON OF CURRENT ENDOSCOPIC PRACTICES

NEUROLOGICAL MANIFESTATIONS OF CELIAC DISEASE

CELIAC SPRUE PRESENTING AS SEVERE HEMORRHAGIC DIATHESIS DUE TO VITAMIN K DEFICIENCY

GUIDELINE FOR THE DIAGNOSIS AND TREATMENT OF CELIAC DISEASE IN CHILDREN

2. Where To Find Gluten Free "Stuff"

3. The Cook's Corner: TORTILLA TOWER

4. Ask the Cook: MY PIECRUSTS AREN'T FLAKY. CAN YOU HELP?

5. Announcements: 2005 FOOD POCKETGUIDE IS NOW OUT

6. Ask the Doctor: WHY DID I HAVE A DH REACTION?

7. This Month's List: GLUTEN FREE FOODS

****************************

1. SAFE LEVELS OF GLUTEN - What Does It Really Mean?

(Editor's Note: The following article first appeared in the Celiac Disease Foundation Newsletter: Summer 2004 and is reprinted here, with their permission. You can visit CDF online at Open Original Shared Link.)

Putting it in Perspective: How much is 100 ppm in real life?

by Dimitrios Douros 7/04

The new study claiming 100 ppm gluten is safe for celiacs resulted in many folks asking what that meant "in real life." So I decided to put PPM in perspective.

Simply put, 100 ppm means if you have one million of something, 100 out of that million makes 100ppm. It can be a million of anythin -- oranges, cars, grams of fat or ounces of gluten.

So, let's stick to our favorite topic: gluten. To make the math easier, I first calculated what 150 ppm amounts to in real life.

* Total protein (not all of it is gluten) composition of wheat ranges from 8% to 15%. In ppm that translates to 80,000 ppm to 150,000 ppm protein (mostly gluten).

* So, product with 150 ppm gluten has 1/1000 (150/150,000) the gluten of wheat. In human terms, take a slice of wheat bread and cut it into 1000 pieces-crumbs. 150ppm is the gluten you would get in one of those crumbs.

* How much gluten is that in weight? Take a 16 slice loaf of bread baked with 500g (a bit more than 1 lb.) of wheat flour:

500grams X 15% divided by 16 slices X 1000' crumbs/slice' = 0.005 grams, about 0.0002 oz.

The new study that claims 100 ppm of gluten is safe for celiacs, translates to 100ppm/150ppm or 2/3 of the number calculated above.

Therefore, 100 ppm is euvalent to about 0.003 grams or 0.001 oz. of gluten.

---

ECONOMIC COMPARISON OF CURRENT ENDOSCOPIC PRACTICES:

Barrett's Surveillance vs. Ulcerative Colitis Surveillance vs. Biopsy for Sprue vs. Biopsy for Microscopic Colitis

Harewood GC.

Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota 55905, USA. Open Original Shared Link

Health care costs are an increasingly important study outcome. Endoscopic practice consumes a large proportion of gastroenterology-related health expenses. An economic comparison of several currently accepted endoscopic practices was performed, ranking them according their cost-effectiveness, as viewed from the payer perspective. The cost-effectiveness of four currently accepted standard endoscopic practices was examined: small bowel biopsy to assess for celiac sprue, colonoscopic biopsy to assess for microscopic colitis, surveillance of Barrett's esophagus, and surveillance of chronic ulcerative colitis (CUC). Parameter estimates were obtained from the published literature. Charges were based on Medicare professional plus facility/technical fees.

Performing colonoscopic biopsies for microscopic colitis in the setting of chronic nonbloody diarrhea was the most cost-effective practice ($2447/case detected), while small bowel biopsy for sprue in the setting of a patient with a first-degree relative with sprue ($3042/case detected) or with anemia ($2982/case detected) was also a cost-effective approach. Small bowel biopsy in the setting of diarrhea ($3900/case detected) was less cost-effective, while CUC surveillance ($14,119/detection of dysplasia) and performance of small bowel biopsy in an asymptomatic patient ($15,209/case detected) were clearly the least economical. As efforts are made to reduce the costs of health care, more attention will be focused on the cost-effectiveness of routine endoscopic practices. Although, our findings put endoscopic practices into economic perspective, future perspective, future prospective trials are required to confirm the validity of these findings.

---

NEUROLOGICAL MANIFESTATIONS OF CELIAC DISEASE

Jos


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Sada Newbie

ooh! GREAT thanks for posting this! I checked out their site and it is very informationional!!!

Sada

FaithInScienceToo Contributor

Dear celiac3270,

THANKS! Great resource!

Hey...I know you are having surgery today...I am sending love your way...

Happy Valentine's Day, Coult!

Gina

KaitiUSA Enthusiast

Yes thanks for posting that..it is an awesome resource to have. Thanks for sharing that...and we are thinking about you today and hope everything goes well :D

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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