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Everything posted by squirmingitch

  1. Mine hasn't either. It really tics me off b/c he only allows you to email him through his website & unless you take a screenshot of what you wrote, you have no record of the communication AND it also asks if you wish a reply to what you wrote him. I check YES, I do wish a reply. Well, this is what he considers a reply. I do not consider this a reply. It is only an acknowledgment of receipt of an email from me. It is NOT a reply addressing the issue I emailed about. Grrrrrrrrrrrrrrrrr!
  2. Thanks cyclinglady! I emailed mine 2 weeks ago but re-emailed again yesterday b/c he had not yet signed on & he's a DOCTOR! I will keep after him until he does. We need to keep on top of this & hound them about it. With the link to the bill; you can see who has signed on to co-sponsor it so you can keep track. We need to keep on them. This is NOT a partisan issue. It benefits ALL of us. Please urge your friends & relatives to do this as well.
  3. 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,
  4. Those really dumb things are always the ones that get you. Sad but true.
  5. Very, very interesting. Thanks for posting that cyclinglady. I wish it went into more detail. Did this involve study subjects? How many? How long were they followed? Details, details.
  6. Hi Gem! 🎶We'll see you in September.🎶🎵
  7. cyclinglady has great suggestions but sometimes you need both hands free. I often garden & need both hands free. Your baseball cap does not provide much air flow for cooling not to mention it doesn't give you much shade. My husband & I both wear this type straw hat. See all the vent holes in there? Nice air flow through there! Plus the brim all the way around provides additional sun protection & cooling. What we do is modify so it stays on in windy conditions. We get long leather shoelaces & tie them around the brim & pass through to the inside to hang down on each side. We take a decorative bead & thread it on so it's adjustable. Then we tie the ends together to keep the bead from falling off. These hats are really cheap too so we have some in the house & extra pairs in the car in case we get stuck somewhere needing protection. https://www.northerntool.com/shop/tools/product_200518981_200518981
  8. If you got the bumps on your scalp for years prior to getting dh on your face & back, then it may be that the ones on your scalp will take longer to resolve HOWEVER, the Dapsone + diet should take care of that quickly. There are many skin issues celiacs get & many skin issues that are similar to dh so it really could be anything.
  9. Oh wow! Thanks so much for this information. I am certainly going to check into this & see if my little town has someone trustworthy to do it. I would love to have doe eyes again.
  10. I know this is a thread from 2 months ago & pretty much everything has been covered but I wanted to address the issue of glue & paper towels & toilet tissue. This has come up before & internet myths being what they are...... The glue used in paper towels or toilet paper is a synthetic glue so no worries that it contains wheat. Wheat glue is not used either to stick the 2 plies together.
  11. I wish I could tell you but I do not know. I don't imagine it contains wheat and I would imagine any of that stuff would all be synthetic chemical compounds. However, I have a question for you. Whattttttttt???? Eyeleash extensions that are lash by lash & permanent?????? How permanent? Applied by a cosmetologist? Apparently I am way behind the times. Please explain this to me. It sounds like something I would really love to have.
  12. There are 2 "common" celiac genes. The gene testing is really used to rule out celiac not to confirm or diagnose celiac. There are blood tests (6 in a complete panel) for diagnostic purposes and then if there is even 1 positive, you move on to an endoscopy with biopsies. So back to the gene testing.... being positive for one or being positive for 2 doesn't really matter. You see, 30 to 40% of the population carries at least one celiac gene but only a minuscule # of those people will develop celiac. I can't believe the doctor used a gene test instead of doing the serum panel. I'm not sure this doctor knows how to test for celiac. It makes no sense how he went about it! Your friend still doesn't have any idea if she's celiac or not. AND their other 2 children? What kind of testing was done on them? The gene test again? Another bit of info. on the genes....it is not common but there are people who do not have either of the 2 genes & yet are medically diagnosed by serum as well as endoscopy. We have a couple of them on the forum. How many endoscopic biopsies were taken when your friends husband had the endoscopy? Had he been eating a normal gluten diet every day for at least the 3 months prior to the endoscopy? He may very well have problems with dairy. Some people do. Celiacs often do b/c the tips of the villi are what processes the sugars in dairy & with celiac, the tips of the villi are the first to be damaged thus causing problems digesting dairy products. If the doctor told them that if the endoscopic biopsies end up being negative then he can be sure he does not have celiac AND WILL NEVER DEVELOP celiac then the doctor is a flaming idiot! Just because you don't have celiac today does NOT mean you will never develop it. This is exactly why 1st degree family members of a celiac should be tested every few years regardless of whether they have symptoms but if they do present with symptoms, then they should be tested ASAP. Celiac can present at ANY age.
  13. Ditto what RMJ & cyclinglady said. I would take that medication.
  14. But she is not symptom free. Besides your statement here saying, "she's basically symptom free" (emphasis mine), you said earlier: "Though she still gets a few headaches and is tired a lot" At 10 yrs old, if she were completely gluten free & has no other diseases, then she should feel fantastic all. the. time. The TTG numbers are telling you something. That's why you came here and rightly so. You're being a good, concerned parent. Bravo! Now, listen to the numbers & run them down. It is not yet time for a gluten sniffing dog. There are more things to consider before you go there. Everyone here has given you some great advice.
  15. Just my 2 cents worth but I wouldn't trust a mechanically sorted oat flour if you gave me a free lifetime supply. Having said that, full disclosure, I can't do oats at all, not even purity protocol oats. In the lead up to confirming my problem with oats, I did call Bob's Red Mill & questioned them about their gluten-free oat products & they said they use both purity protocol grown oats AND mechanically sorted oats. Just FYI. Plus we all know about Cheerios & their problems & questions regarding their methods of testing. I say try the Fasano diet.
  16. Hey Chris, have you been tested for rheumatoid arthritis? Mine all seemed to start with affecting my feet. Just a thought of something to look into. Dried beans, sorted & washed & cooked for carbs. Home made re-fried beans. Also, protein makes a big difference & will cause you to depend less on carbs.
  17. It's not entirely unusual. Your body is probably going through gluten withdrawal. It's mad at you for taking away it's gluten & is rebelling. Your sister may or may not have gone through gluten withdrawal. Some don't but most do. Just google gluten withdrawal & see how many posts there are on the subject. You can ditch dairy & see if that helps. The tips of the villi are the first destroyed & they are what deals with breaking down the lactose in dairy. Another thing is cook everything to death. I know, not fun, but easier on your gut. Go with things like soups, stews. Don't eat any processed foods yet; just fresh fruits, veggies & meats.
  18. It's easy to make that mistake. I've certainly done it before.
  19. @Pauline12 and @Coltsneck24 You guys are replying to people who were on here in 2008. They have moved on & haven't posted here in years & years. Having said that, I will post about my experience with shingles vaccine. I have dh, my hubby does also. I know, weird right? It happens. Once one knows the symptoms, one is able to recognize symptoms in others. We both got the Zostavax shingles vaccine 5 years ago & had no negative or side effects at all. We plan on getting the Shingrix since it is more effective. We haven't gotten it yet b/c of the shortage of the vaccine. We'll see how availability looks this fall.
  20. If you don't talk to doctors then they don't say stupid stuff.
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