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enolah

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Everything posted by enolah

  1. enolah
    I hope you get some answers to your question, because I have similar questions. My dd is much older than yours, but for now we are assuming she also has non-celiac gluten intolerance. She also had a negative workup including biopsy. Her genetic profile does put her at risk for celiac, however, and she had two stool tests showing fat malabsorption. I...
  2. enolah
    We are assuming my oldest dd has nonceliac gluten intolerance. She had negative antibodies and a negative biopsy despite classic symptoms, DQ2 heterozygote genetic profile. She is now back on a gluten and dairy free diet after having broken the diet for nearly 3 months in order to undergo her biopsy. She may be slightly better after two weeks on the...
  3. enolah
    I couldn't vote very well either--in my case for my daughter's diagnosis. She had a DQ2 heterozygote genetic test plus all the symptoms of celiac along with abnormal fecal fat tests. Nonetheless her biopsy was normal, so she was diagnosed as possibly gluten intolerant based on her partial response to a gluten-free/dairy free diet. Nobody bothered to...
  4. enolah
    It does sound like you are looking for a private practice doctor. Do you want a gastroenterologist or a general pediatrician? Perhaps one of the best well known celiac experts is at University of Maryland, Alessio Fasano, and he works with the GI doctor the pp mentioned. I'm guessing you are already are aware of him since you are in Baltimore.
  5. enolah
    I get the idea of not using wooden utensils previously used for gluten containing foods. I'm happy to hear that some have used plastic ones in good condition without problems. I just bought a brand new iron skillet, but maybe that was not necessary since my old ones were well seasoned. I'm trying to decide how to arrange the kitchen so that no one toasts...
  6. enolah
    I'm pretty sure her GI doctor would write a letter saying she's gluten intolerant but not having celiac disease. Luckily, her pediatrician has celiac disease herself, so I think she will be highly supportive in writing any necessary letters. So far, we haven't contacted any of the colleges she has applied to to ask about special housing arrangements. One...
  7. enolah
    Hi there, We are going on the assumption that our daughter has gluten intolerance. Her biopsy was negative. Her last endomysial IgA two years ago was negative, but she has had abnormal fecal fat on two different occasions along with classic celiac symptoms and DQ2 heterozygote state. She will be going to college next fall and will need to make special...
  8. enolah
    Her GI doc says she may still have gluten sensitivity if not celiac. She still wants to do a few more tests for other things. In the meantime, dd has decided to give at least a good three month effort on gluten and dairy free diet--no school lunches, no eating out, and a few new kitchen tools to try to avoid the risk of cc.
  9. enolah
    She was not cheating at all. In fact, she is willing to do just about anything to feel better. During her last trial on gluten free/dairy free diet, I was not using separate cooking utensils. I am however, meticulous with cleaning and always ran the utensils through the high temp/sanitizing cycles in the dishwasher. She never shared the toaster, condiments...
  10. enolah
    I could use some help. My 17 y.o. dd just had her endoscopy with biopsies of the duodenum. The pathologist says she has "normal villous architecture and no inflammatory cells." About 2 years ago her endomysial IgA was negative (with normal total IgA). Her symptoms are diarrhea, cramping, weight loss (now stable), and nausea. The only test that...
  11. enolah
    4 years--well, that would probably go on record as the worst case of bedbugs ever! So much for that idea.
  12. enolah
    I hope you are not insulted or grossed out, but has anyone considered bedbugs? I know someone who recently had a rash which sounds sort of like yours. She picked them up at an upscale hotel and brought them home. She had the rash for over a month until a dermatologist finally made the diagnosis.
  13. enolah
    These are the most frustrating symptoms for my active high school aged daughter. It's hard for her to get going in the morning for school when she has to spend the first several minutes dealing with nausea (rarely vomiting) and diarrhea! She's never been late to school, but it's been hard for her to eat breakfast due to overwhelming symptoms when she wakes...
  14. enolah
    Did anyone else have these symptoms before getting diagnosed?
  15. enolah
    I'm glad you have an appointment upcoming with a specialist and I hope it goes well! I can relate to the frustration in wanting answers. We are currently waiting for my daughter's endscopy which is scheduled for the end of Oct. It sounds like you doing a good thing to find a new primary care doctor after the way you were treated and didn't have phone...
  16. enolah
    My daughter's saliva test from Prometheus came back yesterday. Her brief trial of gluten free (6 weeks) helped her pain but not her diarrhea. She has since gone back to a regular diet with one more month to go until her endoscopy. The GI doc wanted her to be back on gluten 2-3 months before the scope. Dh asks why we're proceeding with the scope. I think...
  17. enolah
    oops, I did not mean mutations, I just meant the HLA testing. I thought it might be helpful, because we have some other family members with autoimmune type illnesses and a few others who may also have celiac but be undiagnosed. Since my daughter has symptoms consistent with celiac, I figured that her symptoms plus a genetic profile that puts her at risk...
  18. enolah
    thanks for the replies so far. Yes, her diet did contain foods marketed as "gluten-free." I also wondered if she was getting trace gluten from those foods. I suppose she could be having gall bladder problems, but her pain hasn't been typical for that. Hers is lower abdomen cramping and frequent nausea along with frequent diarrhea. She had two fecal fat...
  19. enolah
    As a new member of this forum, do I need to post a certain number of comments on the peoples' threads before a new topic of mine is posted? A few days ago, I started a new thread but so far have gotten no replies. I assume it's because no one has been able to see my post. Is this right?
  20. enolah
    Hi, I'm new here. I'm asking on behalf of my teenage daughter who has been on a gluten-free diet for about 6 weeks now. She was feeling so poorly, we decided to just try the diet since the doctor couldn't schedule the endoscopy for a few months! We plan to have her go back on gluten before the endoscopy is done. Anway, here's my question: How long should...
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