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I.M.Celiac

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I.M.Celiac last won the day on November 4 2017

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  1. I am not missing anything. My highly-overpaid American NYC doctor missed my first diagnosis via endoscopy. I asked that he test me again. After the second endoscopy, he discovered I had a thing called Celiac. I had great insurance but I paid thousands of dollars in network to get a straight answer. Less-pushy Americans would never have gotten...
  2. I had headaches for days before my Celiac diagnosis. I loved bread. Never knew the connection. Also, some Belgian beers were giving me days-long headaches but I thought it was the yeast or alcohol. All have gluten. Dropped all gluten and that was my first relief! Good luck. It's been 12 years but I remember the pain SO well. My heart breaks for you.
  3. Wow, if anyone in the USA is reading what the UK does for Celiac people, should we regret that whole American Revolution thing? And the War of 1812? UK, will you take us back? If we have healthcare, many Americans will be bankrupted by healthcare bills. And getting diagnosed is thousands for dollars for an endoscopy. That's why many Americans will...
  4. Um, someone hold my gluten-free, non-alcoholic beer. I think you are trying to process your anger at your diagnosis. I totally understand. It is an intense change. There is no logic to it. You are mortified with the diagnosis and went into a Google spiral. I was the same way! I couldn't spell "Celiac" correctly. I thought there was a mix-up...
  5. Hi Mathew! My heart goes out to you. The struggle from the family is especially rough. (Celiac is genetic but they don't want to hear about it. So frustrating!) Are there any Celiac meet-ups near you? Or maybe start a "Visit-a-gluten-free-bakery" meet-up? Rate it on a scale and post about it? Once I had other friends with gluten-free issues, it got...
  6. Yes, fresh fruit would be great. Forgot about that! When I was first diagnosed, fresh fruit was harder to find in American hotels. (Not to mention close relatives' homes!) Even 7-11 has fresh fruit now! Total progress.
  7. Hi Shai! I'm no doctor but I was angry that I couldn't eat gluten. It's in everything. You almost have to mourn the loss. Relatives and friends question you. It's very heavy emotionally. But slowly, you realize some "unrelated" issues are gluten related. Like 15 issues since childhood. It's mind-boggling. Keep up the great work. It will pay off...
  8. Here's a cheat sheet for Celiac Travels in America: Sad vending machines in waiting rooms: -nuts (Not trail mix) -Skittles -Some potato chips (only if you know they are gluten-free because you've had them previously.) -Mounds or Almond Joy These items are super junk food but will help in an emergency. Airplanes: ...
  9. I had 2 endoscopies because my GI “forgot” to look for Celiac. (So expensive!) He is my ex-doctor now. My height was probably stunted and my tooth enamel was definitely affected by undiagnosed Celiac. That may motivate your daughter to cut out gluten. Would love to have been taller with better teeth! Good luck!!
  10. @Geriatric Newby Caregiver I am SO sorry you are having to go through this. My heart breaks reading what you are going through. My father was similarly ill last year. He was never diagnosed with Celiac but he had the same rate of diarrhea you described above for weeks after a heart bypass. He was wasting away in front of us. I was convinced...
  11. I wonder this as well. Especially after learning about gluten ataxia and my own decreased anxiety +neuro issues after quitting gluten. Guess someone would have to genetically study Van Gogh’s nephew’s children to see if they have the Celiac gene?
  12. Dear Aries74, First, you are an awesome mom. I had most of these symptoms your son had. It took 2 endoscopies for a celiac diagnosis because my now-former GI forgot to look the first time.( I had an ulcer as well.) I felt like I was 70, not 43. All symptoms are gone now. Still can’t believe it. I am very strict or I get very ill soon afterwards. ...
  13. Yes! Always had heart palpitations, wore a 24hr monitor once and was on high blood pressure meds for 10 years. (Starting at age 27!?) Test results non-conclusive. Had no idea it was related to Celiac but it all went away after I went gluten-free. Never bothered to tell anyone but my husband. ( A cardiologist would just roll his or her eyes...
  14. Wow! I just started another thread about a medicine (Prepopick) with gluten. I too, canceled the appointment. (I also found a new GI today.)
  15. Celiac diagnosis was 6 years ago. Feel great now. This week, I was getting a routine colonoscopy and received a prescription for a powdered medicine called Prepopik to ahem, clean the intestines out. I have been glutened by powdered mixes before so I realized I should check the ingredients as a precaution. No gluten-free labeling and a vague...
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