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hayley3

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

Everything posted by hayley3

  1. hayley3
    I have terrible constipation but so far only a SIBO diagnosis. I would work on getting them to do an upper endoscopy, where they can check for SIBO and celiac at same time.
  2. hayley3
    I have a rash that I've had on and off, for some time. It itches like crazy, but then hurts too. Tiny painful red bumps (some have blisters) but they are not in the specific locations I have seen in the descriptions. If you've had the rash is it in other places besides the knees and buttocks and elbows? I did have a rash when I initially became sick,...
  3. hayley3
    Not sure if this helps you or not but mine says HLA DA2 (DQA1*05) which A stands for the alpha and (DQB1*02) which the B stands for Beta Beneath those it had all the HLADQ2 variants I tested positive for alpha: 03, 05 Then all the variants I tested positive for beta: 0201, 0301 It's crummy that testing companies don't use a standard and it took me...
  4. hayley3
    Thanks for mentioning that facebook group. My daughter is now 18 but has been so constipated since she was 3 that she had fecal impactions a few times. She also had pinworms really bad and that was a shocker discovering that kids could even have worms. Now my daughter has bowel movements so large, she has to collect them in a bedpan because they won't...
  5. hayley3
    Mine was DQA1*05/DQB1*02 and negative for DQ8. and my allergy/immunologist doctor said I had a 1 in 35 chance of Celiac disease although my tests were negative. Endoscopy showed inflammation but I had been on a fairly strict wheat free diet for 7 years. I'm not sure what heterozygous means, mine doesn't say that. It's confusing for sure. I tried to...
  6. hayley3
    I stopped eating gluten and all packaged products 7 years ago. I also did a couple water fasts which supposedly would heal your intestines. So then before the endoscopy I ate bread for 2 months occasionally. After taking it out of your diet for so long, it's a hard habit to bring back in. So I don't know if that was sufficient to get an accurate endoscopy...
  7. hayley3
    "I Be Stumped!" haha Nicole. Too funny! Well I was diagnosed with IBS, but it turns out for me it is SIBO. I was taken out of the IBS category when they did a intestinal biopsy and found out I did actually have something they could quantify...SIBO. So they are not stumped any longer when they find out you have SIBO, I meant. SIBO is not curable...
  8. hayley3
    After some reading, SIBO (IBS) can cause osteoporosis, malabsorption and autoimmune disorders, just like celiac disease, it's just that the list of items to avoid is much larger and they say there's a cure but the cure is not really a cure at all. So with SIBO you still can't eat anything that has gluten in it. The only difference between SIBO and Celiac...
  9. hayley3
    A Rheum told me once that just because I had all these things going on, it didn't mean they were connected together and he made it clear I was wasting medical resources. Surely I must want something monetary to keep coming back to him, he said. So a diagnosis is pretty important to me. And I know a lot of people have had the same kind of doctor troubles...
  10. hayley3
  11. hayley3
    @cyclinglady I can't tell when I am glutened. I thought I could tell but they say for celiacs who don't get better on a gluten free diet they have SIBO which I do. (I went on the SCD diet 7 yrs ago, so I cut out gluten long ago, but then slowly added eating a chicken wrap at Wendy's once a week, then a doughnut before the EGD). I did a 10 day water fast...
  12. hayley3
    Thanks but I feel like I'm barking up the wrong tree. Were you finally dx'd?
  13. hayley3
    That's interesting BoJon...what issues can you see now that were actually celiac symptoms? I have bloating and constipation and gerd that is attributed to SIBO, sometimes nausea. Cheryl
  14. hayley3
    because I hate to be in limbo. After 30 years of being sick, yes I want a diagnosis, but I'm never going to get one, I can see that. The allergist said to stop eating gluten for 6 months. That my probability of celiac disease is 1 in 35. What good will it do to stop eating gluten..the tests and endo were negative. What's the use? I also have SIBO...
  15. hayley3
    That's good to know I hope they get the test completed in my lifetime.
  16. hayley3
    Thanks Arlene, Gem, Ski and Lisa...for sharing your stories and insight. Was very interesting to read that your problems were so similar and that you are so much better. Running circles around your grandkids Arlene, is encouraging! I look at all the things I have wrong with me, and including the miscarriages and the preterm infant I delivered, it all...
  17. hayley3
    Thanks Arlene, I did that too. My daughter would bring home this really mild cold, she would have a sore throat and the sniffles. I would get really sick from it, then it turned into a sinus infection, then it turned into bronchitis, and by that time I'd been sick for at least 3 weeks and was so run down it would take forever to recover and it was a vicious...
  18. hayley3
    Hi Ruth, No I've not tried Kaniwa...never heard of that ever. I live in the boonies so Walmart is my only grocery. I used to be a good cook...age helps with that. lol I make my own mayo and salad dressings since I'm allergic to dairy, so I eat a lot of salads. Breakfast is hard and esp now without butter to scramble my eggs in. I eat just meat sometimes...
  19. hayley3
    Thanks Gemini....I changed my diet in the past, but I was still suffering from food allergies. Of course I didn't know that at the time. I even switched to gluten free oats but I was still having problems with corn, rice, dairy, potatoes, beans, fish, tomatoes and you know it's hard to tell what's going on when you have a lot of foods that are bothering...
  20. hayley3
    Thanks so much....SIBO and Celiac both need to avoid wheat, barley and rye, but for different reasons. So really going gluten free helps SIBO too. I just found a medical journal article that says SIBO does cause osteoporosis and can also cause mild duodenal inflammation, but then most SIBO articles also say you can be cured by antibiotics which is NOT...
  21. hayley3
    Well after much reading, I am thinking I will be dead long before they figure out what I have. I thought that being dx'd with SIBO, Sjrogen's, low wbc, low protein, Osteoporosis, fatty liver disease, thyroid disease, positive ANA, and all the other problems plus a positive genetic test was helpful but nope, I'm still in the same boat. My mom died with all...
  22. hayley3
    Thanks Dee. How do you make your kale chips? @Lisa...I tested negative last July 2013. They did the tTG and the DGP IgA and IgG and all was negative. I started on the SCD diet probably in 2007, although I wasn't perfect, then tried the Paleo diet. I rarely eat wheat cause I took it out of my diet. Although occasionally I would get a chicken wrap from...
  23. hayley3
    My test results actually say: Positive for one of the HLA-DQ variants, but what that really means I'm not sure. I've read that DQA1*05/DQB1*02 is equal to DQ 2.5 which is indicative of the highest possibility of celiac disease but I'm not understanding homozygous and heterzygous and how to tell which I have. I've posted a few excerpts from other sites...
  24. hayley3
    Yes Ruth, the GI doc told me to follow the Cedars Sinai low fodmaps diet after my SIBO test came back positive. And I found a couple of other sites with different explanations of the genetic testing that I'll post in case someone else might be looking: Open Original Shared Link Open Original Shared Link
  25. hayley3
    Thanks Ruth...I did find something from Quest Diagnosics which I'll post below. I did have the endoscopy and it only showed inflammation. I've been on the SCD diet since 2009, and then I'm supposed to be on the low fodmaps diet, plus the migraine diet and the low sugar diet. Also I cannot eat the foods I'm allergic to: corn, rice, tomatoes, and beans,...
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