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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
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • 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!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
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