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kayo

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Everything posted by kayo

  1. kayo
    I have issues with soy as well. I've read soy oil isn't supposed to be an issue as opposed to the soy protein and lecithin but I swear I can feel my face and neck swell when I have it. I go from having two chins to three! Best to avoid it. Here are some snack ideas that are gluten-free/sf that would be a bit more nutritious than chips: Larabars...
  2. kayo
    Sorry to hear you're feeling so badly. I've had to get over my shyness and tell the server I have food allergies. Then I ask how something is prepared. It gets easier the more you do it and I find most servers and restaurants to be accommodating. The trouble with places like Applebee's is they're essentially fast food. Many of their food items come...
  3. kayo
    Thank you all so much for your responses. Feeling a bit better today. I'm comfortable with the diet. I love to cook so I have embraced the challenge. I haven't had any temptation to cheat. It hasn't even crossed my mind. I feel too good being gluten, soy and dairy free to risk it for a few moments of indulgence. Plus, the homemade gluten-free/sf/df food...
  4. kayo
    I finally got diagnosed with celiac this past week. I have been gluten free since last summer and the Enterolab results came back with a positive for gluten intolerance (and soy) though previous blood work was negative. I also don't have the classic genes. Other than that I pretty much have a text book case according to my new (and fabulous) GI doc. Finally...
  5. kayo
    I keep learning more and more every time I come here! This caught my eye: Keratosis pilaris (chicken skin) I have this! Never knew it had a name. Never thought to have it looked at or treated. I just thought it was my Irish skin :-) The back of my upper arms and my lower legs have it. It's not itchy. I've tried scrubs, lotions, exfoliation, salts, sponges...
  6. kayo
    My appointment with Dr. Cheney of the Celiac Center at Beth Israel Deaconness Medical Center (Boston MA) is finally coming up this week. I've waited about 5 months for this appointment. I'm looking forward to working with their nutritionist too. When I made the appointment way back in November I did not yet have my enterolab results. I now know that the...
  7. kayo
    What are the genes associated with celiac in Europe? I'm curious because I do not have the US recognized celiac genes DQ2 or DQ8 though I'm 110% sure I am celiac. I have to disagree. IBS isn't a diagnosis, it's a cop out. Docs diagnose us with IBS because it's easy and they lack the knowledge and empathy to investigate further. If someone has IBS...
  8. kayo
    I don't follow the SCD diet but I am dairy, gluten and recently soy free. I've had a lot of improvement in my RA, Sjogren's and gyn mostly due to going soy free. I've been reading a lot on gluten and soy intolerances and this part of your post jumped out at me: I'm reading the Hidden Dangers of Soy and learned soy can cause endocrine and thyroid...
  9. kayo
    Hi all, Just wanted to share a bit of good news. I have struggled with restless legs and a restless body at night my entire life. I can count on one hand the amount of 'good night's sleep' I've had in nearly 40 years. I never wake up rested and it takes me a long time to wake up and be productive. I typically spend my mornings in a fog. Since I was diagnosed...
  10. kayo
    I have this as well and I believe it is due to Sjogren's which can be co-morbid with celiac and RA (and other auto immune illnesses). In my case it causes severe dry eyes and I don't make enough tears. I also have dry mouth too. The lack of tears cause the corneas to dry and you get fractional light and sometimes foggy vision. Sometime you can have 2...
  11. kayo
    I'm experiencing this as well and always attributed the attack to dairy but now I think it's gluten related. I've been gluten free since the summer and have had these attacks a few times, most recently twice in the last 3 weeks. The pain wakes me out of a sound sleep around 2 am. It's sharp and located in the center of my abdomen just above my belly button...
  12. kayo
    Thanks ciavyn, I'll check that out. I prematurely tossed some of my lotions and glosses but fortunately they can be retrieved from my bin (nothing but papers in there!). My Avon body wash, lotions and glazewear lipglosses are gluten and soy free! I'm so glad Avon puts the ingredients on their website in nice big print. I got so frustrated reading...
  13. kayo
    When I got my enterolab results back I was shocked to see I had a soy intolerance as well as gluten. I didn't know anything about soy intolerance so I searched for symptoms. This is when I had a big aha! moment. I stopped gluten the end of July and while I felt some great improvements I still had inexplicable weight gain (after loosing initially when...
  14. kayo
    I just found out that in addition to my gluten intolerance I also have a soy intolerance. I'm dairy free too but that doesn't seem to be an issue in these self care products. This has thrown me for a loop. I just finished vetting all my food and personal items to rid the gluten and now I have to go through the entire process again. I'm finding that when something...
  15. kayo
    One more question. I have seen people describe themselves in posts or in their sigs by their gene info. Sometimes I see people say double or single DQ#. How do I transcribe the results below? Would I be a DQ1 or a DQ1,4? I'm not sure what the 1,4 (5,4) numbers mean, nor do I know what 501 and 402 refer to. I need a science degree! HLA-DQB1 Molecular...
  16. kayo
    Thank you both for your responses - they mean a lot to me. It's nice to have 'company'! It's funny, I was fully prepared for gluten intolerance or celiac results but not the soy intolerance. If I remember correctly the soy test was lumped in with eggs and yeast. I half expected to have an intolerance to yeast but it came back negative. Very glad I'm...
  17. kayo
    I read somewhere, maybe on these boards, that Tyson sometimes injects their chicken with a solution that contains gluten. This is important to know because some restaurants are supplied with Tyson products. The other is Tums. I had no idea that the Tums and chewable Gas-x that I was taking to lesson the effects of gas from gluten actually have gluten in them...
  18. kayo
    I get a pain in that area too. I call that spot my 'pissy colon' because that's where it seems to be. I have had that pain for years. For me it seems to be associated with cassein and not gluten. I am severely lactose intolerant but can tolerate a bit of cassein, like in cool whip or veggie cheese or coffee creamer. Nothing seems to make the pain better....
  19. kayo
    Hi all, I got my test results from Enterolab and would love to hear your take on the gene info which I'm finding a bit hard to understand. I think this means I'm negative for celiac but positive for gluten intolerance? If so that will be a relief. I was really worried about the celiac possibility. (I already have RA) Also I'm shocked at the soy...
  20. kayo
    Same here! Since going gluten free I'm constantly peeing. I also feel thirstier than I was before but I don't think I'm drinking more, just the sensation of thirst is stronger, if that makes sense.
  21. kayo
    I had a bad fritos reaction last week. The pain woke me in the middle of the night and had me doubled over. 2 hours of pain and diarrhea, sweating, nausea, and nearly fainting. I haven't had a reaction like that in a long time. That type of reaction for me points to dairy more so than gluten. I went over everything I ate in the past 4 days and the fritos...
  22. kayo
    This is my first gluten free Thanksgiving too and I've been somber about it as well. I'm also dairy free which makes navigating a meal at someone else's home a real challenge. T has always been my favorite holiday and the T meal is my absolute favorite meal. It's all the things I love. I love to cook and can totally recreate a gluten-free/df T meal so that...
  23. kayo
    I'm so happy to hear that this is common and shared experience and with time it should go away. I'm 5'3" and have put on 40 pounds over the last 5 years, much of it in the past 2 years. I hover around 140 pounds. But as you can see, prior to these GI issues I was quite underweight at 100 lbs. Most of my life I had difficulty putting on weight. Part of my...
  24. kayo
    I'm on the journey to figuring out if my GI issues are gluten insensitivity or celiac. I have my kit from enterolab to do this weekend but when I was at my rheumy's a few weeks ago I asked him to run the blood test to see what it would show. Unfortunately at the time I didn't realize I should have been more specific* so the test ran was the "TTG/Endomysium...
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