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Clan Thompson
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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 archives of past articles and such on their site here. 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: http://www.clanthompson.com/

To subscribe to this newsletter: http://www.clanthompson.com/celiacsite/news_subscribe.html

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

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 http://www.celiac.org.)

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.

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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. harewood.gavin@mayo.edu

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.

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NEUROLOGICAL MANIFESTATIONS OF CELIAC DISEASE

Jos

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

Sada

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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

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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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