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May Is Celiac Awareness Month


Lisa

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Lisa Mentor

Take a minute and let Congress know you would like their attention:

Open Original Shared Link[capwiz:queue_id]


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MaryJones2 Enthusiast

Thanks Lisa!

brendygirl Community Regular

Thanks so much for posting! I sent the link to my whole email contact list. :)

Lisa16 Collaborator

Thanks Lisa!

I editeed the text and attempted to send he form. Sadly my representative does not accept emails.

Sigh.

But this is a fabulous idea.

Lisa

jerseyangel Proficient

Done. Thanks Lisa :)

MaryJones2 Enthusiast

Here's the text of the proposed resolution: Open Original Shared Link

Lisa Mentor

Please take a minute to fill this out and send it to your Representative. Thanks to those who have.


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  • 3 weeks later...
Lov2BeMe Rookie

This is great i sent this out to everyone I know!~

Spread the word.. knowlege is contagious!

LadyBugLuv Rookie
Take a minute and let Congress know you would like their attention:

Open Original Shared Link[capwiz:queue_id]

thanks! sent mine in :)

wonder-woman143 Newbie

That was so easy! Thanks Lisa!

wonder-woman143 Newbie

I just recieved this email from my Congressman:

[Thank you for writing in support of the goals of National Celiac Awareness Month. This is an important issue, and I appreciate your input.

Indeed, celiac disease is significantly under diagnosed in this country, though officially nearly 1% of the population suffers from this disease. As noted in your email, the disease is caused by a reaction to gluten proteins that are often found in wheat products. The only effective treatment for celiac disease is a diet completely free of gluten and other gluten products. I agree with you that the public should be educated as to the causes and effects of this disease. I look forward to discussing this resolution with my colleagues, and will keep your thoughts in mind when it comes to a vote.

Please feel free to contact me in the future with your thoughts. It is always good to hear from you.]

Does anyone have a good response to this letter that I could send as a reply, now that I have my congressman's attention? I'm new to this since my husband and 3 (out of 4) children have just been diagnosed this month. Thank you for your help.

WW

digmom1014 Enthusiast

Done! Thanks Lisa!

mushroom Proficient

I just received a reply from my congressman too. He included the information that "While celiac disease is the most common genetic disorder in the world, more research is needed to fully understand and properly treat celiac disease."

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    • knitty kitty
      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
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    • knitty kitty
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    • lizzie42
      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! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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