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Patty harrigan

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Patty harrigan

  1. Absolutely disheartening. I always go for a certified product. Wondering if it’s worth the extra money and extremely disappointed in the organization for letting this happen.
  2. That’s exactly what happens to me. I have been unconscious twice, vomiting afterwards for up to 9 hours and then the bone breaking chills start. I have never vomited while unconscious, thank god. It’s an unusual presentation and my doctors were reluctant to think it was due to gluten ingestion. However, I know it was gluten as both times it happened wit...
  3. I stopped eating out 5 years ago….sadly. I have a friend who owns a number of successful restaurants in NYC. Many years ago at my behest, he completed Columbia Celiac Center’s “training” and developed beautiful menus at his restaurants. HOWEVER, he feels that mistakes will happen in a busy kitchen no matter how hard they try, no matter how much they train. ...
  4. All the doctors I have seen think it’s a vasovagel reaction. I only eat food prepared in my own kitchen so I have not been glutened for nearly five years. It’s a hard way to live but passing out while behind the wheel is not ok by any stretch. And BTW, I’m only out for a very short time. Going out for a few hours must be very very scary!
  5. https://www.grainful.com they produce purity protocol lentils. I have used these without any problems and I get extremely sick. I still thoroughly sort and wash. They were tested by the Gluten Free Watchdog. I have bought them right from the company but they may be available on Amazon. Unfortunately they are in high demand and not always available. If they...
  6. I’m by nature a happy, upbeat, energetic person. After I get glutened, I become a lethargic, weeping mess. I actually don’t care if I sit down and die. This can take months to disappear. It’s not suicidal, it’s an overwhelming feeling of ennui; that life is too hard and I just would like to sit down and close my eyes. That I’m not safe anywhere. I become...
  7. Has anyone used this? It states it is gluten-free and has no MSG. Ingredient list includes yeast extract but doesn’t list substrate. I called and there consumer department could not give me an answer either. My husband made a big meal using it without checking with me first. Hoping someone out there uses it and has no problem!
  8. I have used many different bluebonnet products for decades and have never had I problem. I get seriously sick from gluten and am extremely careful.
  9. I have gone to the ER as my brother, who is an ER doctor, felt I should be monitored. I passed out while there. The ER staff had no idea what to do other than give me sofran to stop the vomiting. I went unconscious while there and they actually thought I fell asleep. The other time I was in a car driving, pulled over and passed out. I wake up on my own but...
  10. This was not dizziness or falling. I was laying on a gurney in the hospital one time and the other I was laying on the floor vomiting. This was a severe reaction to cross contamination that started 2-3 hrs after eating out. I go into shock.
  11. I have passed out twice after eating out. I have been gluten free for about 12 years and had no intestinal reaction to gluten until I became gluten free. My reactions to accidental glutening has become progressively more severe. I started vomiting and shaking with cold for hours. The last 2 times I was glutened I went unconscious. I was thoroughly tested...
  12. I just don’t eat out anymore...ever. Sad but keeps me safe. Nothing is worth the reaction.
  13. I too vomit and pass out and then get hypothermic. This ha only happened 2 hrs after eating out. I’m extremely careful and rarely eat out so my episodes have been 2 yrs a part. I am being told by a celiac doctor, allergist etc that this is not a celiac reaction. I am currently being tested for other food allergies as the doctors I have seen think this is a...
  14. Two hours after accidentally ingesting gluten, and only after I have eaten out, I start to vomit for hours. It’s like clock work. Then I get hypothermic With bone breaking chills. My temperature dropped to 95. I get so weak I can barely lift my head up to vomit. With this last episode I passed out behind the wheel of a car. I have no idea how my husband g...
  15. What are they? I’m in Boston frequently. Legal Seafood has, in my experience, done a very good job of training there staff re allergies.
  16. I had terrible knee pain that did not resolve for nine months. Got out of the car one day soon after being glutened and couldn’t walk. No injury. All tests negative for joint injury. Unexplained onset of extreme joint pain led to my initial diagnoses. Blood screening for Lymes, arthritis and the other autoimmune causes were negative but my liver enzymes w...
  17. I see both sides but this is a serious disease and I was not well for 9 months after my last restaurant glutening. If they says it’s gluten free...gotta be just that. Can’t be sorta gluten free.
  18. So many horrible stories! Not one MD I have spoken to, other than Dr Green and his colleagues at Columbia, get the truly serious repercussions of an accidental gluten exposure. I have a similar story of hospitalization after eating in a restaurant where everyone talked the gluten-free talk. That night I walked through a door that has no re- entry. I believe...
  19. Traveling....we stay at hotels that have microwave and freezer so I can bring prepared foods. We are retired and went as far as to buy an Airstream travel trailer so I never have to eat out of my own kitchen. I bring a sandwich that doesn't need refrigeration (ie. peanut butter and banana) when we are out and about for the day. I also urge my poor foodie...
  20. I just don’t eat food that either my husband or I have prepared. People think I’m crazy but I’m the one who pays the price. Nothing is worth getting glutened....nothing. I travel with my own cooking equipment down to a sponge. I don’t eat out unless the restaurant has a separate prep kitchen. I’m 10 yrs into this and every time I get glutened my reaction ...
  21. In my experience.....they know nothing unless gluten-free is printed on the label! Emergency room personal don’t even know what celiac means!
  22. I too have extreme vomiting and went to ER last time I was glutened. BtW... the only time I have vomited in the bast 60 years was during pregnancy and he’s 37 years old. I am not a vomiter. I was put on an IV and monitored for blood pressure etc. I am extremely careful and in the 10 yrs since diagnosis I have only been glutened 6 to 8 times. The last few t...
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