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Showing content with the highest reputation on 05/15/2019 in all areas

  1. 1 point
    EMAIL YOUR US REPRESENTATIVE TODAY IN SUPPORT OF THE GLUTEN IN MEDICINE DISCLOSURE ACT OF 2019 Please personalize the sample letter pasted below. Email this letter to your local representative. A state-by-state directory is available at: https://www.house.gov/representatives?fbclid=IwAR3eNMLYkKJCJ52NLkbcZ7wqwGf9NafcHq-p9ydg7RZpvFNuz5ezQhhSv5I Here's a link to the bill: https://www.congress.gov/bill/116th-congress/house-bill/2074/all-info#cosponsors-content Sample letter: Cosponsor H.R. 2074: The Gluten in Medicine Disclosure Act of 2019 Dear [Name of your representative]: According to the Mayo Clinic, the rate of celiac disease has almost quadrupled over the past 50 years. Celiac disease is a serious, genetic autoimmune disorder in which ingesting gluten causes damage to the villi of the small intestine. It affects nearly 3 million people in the United States. In comparison, Alzheimer’s disease affects approximately 2 million people. The only treatment is the total elimination of gluten-containing products, including wheat, barley, and rye sources. For some, failure to avoid these can lead to life-threatening complications. Currently, this is nearly impossible to determine the presence of gluten in prescription medicine. In 2004, the Food Allergen Labeling Consumer Protection Act required packaged food labels to identify all ingredients containing wheat and other allergens. This requirement does not extend to prescription drugs. After repeated efforts to shed light on this issue, the FDA released draft guidance in 2017 encouraging drug manufacturers to disclose the presence of gluten. While some manufacturers have taken this step, it has not been implemented consistently. This leads to anxiety of not knowing whether or not your medicine is causing more harm than good. That is why Representatives Tim Ryan and Tom Cole introduced the Gluten in Medicine Disclosure Act, which will make it easier to identify gluten in prescription drugs. This legislation would require drug manufacturers to label medications intended for human use with the list of ingredients, their source, and whether gluten is present. A gluten-containing drug that does not meet these requirements would be considered misbranded under Section 502 of the Federal Food, Drug, and Cosmetic Act. This labeling will allow concerned consumers to know, for example, if the starch in their prescription drugs comes from wheat or corn. For the nearly 3 million Americans living with celiac disease, that small distinction is an important one. Please join other members in cosponsoring this important piece of legislation to make it easier and safer for individuals with celiac disease or gluten sensitivity to make informed purchases of needed medications. For more information or to cosponsor, please contact Rachel Jenkins (rachel.jenkins@mail.house.gov) in Congressman Ryan’s Office or Shane Hand (shane.hand@mail.house.gov) in Congressman Cole’s Office. Sincerely,
  2. 1 point
    I did this a few days ago. Thanks for posting. Please write your rep today!!!!
  3. 1 point
    As @cyclinglady said, being super strict was necessary for me to make any headway against the rash. I have been gluten-free for 4 years, and I still get dinged every once in a while when I try a new brand/thing. In my first year gluten-free, I was not very careful about CC with my gluten-eating roommates, and was fairly relaxed about what packaged foods I would buy - I didn't worry about stuff saying it was gluten-free unless it was something like bread, pasta etc. I ate out, but didn't really take many precautions aside from saying I was gluten-free. Many celiacs live like I did in that first year with apparent success. However, I was still getting sick quite regularly, and my rash didn't improve much. While I felt much better than I had before being gluten-free, I was aware that I could be doing much better, and so I slowly started doing all the "paranoid" things I'd laughed at when I first started out. Basically, I did a Fasano-ish diet (I allowed myself a few things that I assumed would be low risk), then added stuff back in. This strategy helped me identify a few things that were causing issues. The whole thing is a bit infuriating/time consuming, but worth it IMHO. Interestingly, I've actually found that a lot of my problems were from single ingredient, non-processed foods. One of the worst culprits turned out to be the store brand maple syrup I was eating intermittently (didn't always buy the same brand, didn't use maple syrup every day). Presumably, they might run the maple syrup on the same line as "table syrups" or molasses (could contain gluten) Point here is that nothing is sacred, with the exceptions of fresh produce, eggs, plain/fresh meat, most plain dairy (ie. milk, butter, cheese). Keep track and look for patterns. It might be something really dumb that you don't think about.
  4. 1 point
    @Maddy1 Consider browsing through the DH section of the forum if you suspect it might be the cause of your head rash and since you have celiac disease. I think you will find that those with DH who have successfully treated their DH are SUPER careful. It seems that 20 ppm threshold might be too much for them (it can be too much for many celiacs without DH too). They avoid processed foods and do not eat out for the most part). Drastic? It works for them. Look at Squirmingitch’s and Apprehensive Engineer’s postings specifically. They are active forum members and have been successful without medications, if I recall. Consider trialing the Fasano diet for a month or so too. https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1 Following this diet will help you determine if you were getting too much hidden gluten exposure into your diet. Also, make sure you are getting follow-up care: https://celiac.org/about-celiac-disease/treatment-and-follow-up/adult-pediatric-follow-up-checklists/ I feel better avoiding processed foods and I never eat out except at dedicated gluten-free restaurants. This works for me. My last repeat endoscopy revealed a healed small intestine. 🤗
  5. 1 point
    Hey Squirmy! Looking forward to communicating with everyone again. I do see that nothing ever changes.......people STILL having trouble being taken seriously by the AMA. Well.....except for Olivia! There are more people in my family being diagnosed, which came as no surprise to me. We even recently got back in touch with some of my mother’s cousins, who now live down south and guess what? One of the adult daughters was diagnosed and she is like me......classic Celiac. The poor thing has numerous issues due to the length of time figuring it all out. If there is one diagnosed Celiac in a family, there will be others.....guaranteed!
  • Posts

    • It is unfortunate that fear of soy has become so popular.  Check out the region around Okinawa, where soy is a foundational food and has been for centuries.  Note that this area is one of the World's green zones where people on average live the longest of all.  This is just one example of an area where soy has been used for a very long time with positive results, or I suppose it is more accurate to say without harmful results.  Of course it is different for those who are medically sensitive to soy derived products and must avoid them.  As for people with Celiac, one must always be aware of cross reactivity and periodic testing is a very good idea.  Celiac is sneaky that way.  For the rest of us, organic, unmodified soy is not only safe to eat, but is an excellent and inexpensive source for a multitude of nutrients.  Thank you for qualifying your statement about MSG.  Personally I tend to avoid additives like MSG that are not actually naturally occurring food, but I reserve any comment beyond my personal preference and will wait for the research to catch up.  I am encountering increasing evidence that you may be absolutely right about avoiding it.
    • Depends on what kind of Advil.  The gel capsules used to contain gluten from what I recall.  What does the label say?   Here is a list of gluten free pain relievers: https://www.verywellfit.com/gluten-free-pain-relievers-562382  
    • https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--114197/?utm_campaign=Research Opt-In&utm_source=hs_email&utm_medium=email&utm_content=72478196&_hsenc=p2ANqtz-8cBCeWpQSG8tjxT3AC5kO9JlVU9sKiGcArKDefDbz0UI0-FrJiSWvmuEAJ7HWszix_3WVyFj1AaK8h8iqwb5bG0LBdew&_hsmi=72478196 A potpourri of issues discussed in this article but here are some things that stood out to me: "Similarly, in Robert’s multinational study reviewing biopsies of patients done initially and at follow up, persistent symptoms were found on the second biopsy in 78 percent of patients with damaged villi and 66 percent of patients who had normal biopsy . . . More than half of 184 patients in the study who had a second biopsy had persistent damage. In addition to the findings related to symptoms and damage, the study was designed to show physicians how to  correctly take samples when a patient needs a second biopsy so changes are not missed." Also, it seems persistent diarrhea is the one symptom that correlates well with continuing villi damage: "Diarrhea was the only symptom the predicted intestinal damage found when a biopsy was done . .  . The study found symptoms of celiac disease are inconsistent in predicting the results of a blood tests and biopsies. This inconsistency led researchers to conclude symptoms should not be the only thing used to evaluate a patient’s response to a gluten-free diet. However, frequent and severe diarrhea should prompt a reevaluation of the condition of the intestine, they noted." Finally and this is long overdue, researchers are beginning to look at the impact of anxiety on Celiac sufferers: "Peter Green, MD, director of the Celiac Disease Center at Columbia University, asked if the study evaluated whether the gluten transgressions being detected with the urine and stool tests had caused the study participants any real harm. “We are concerned we are driving these people crazy,” he said in a question and answer period following the lecture.  Green noted that researchers are increasingly looking at the effect anxiety about the gluten-free diet has on patients."        Celiac disease can become bigger than life if we let it.
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