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Celiac's Wifey

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

Everything posted by Celiac's Wifey

  1. Celiac's Wifey
    My daughter has dermatitis herpetiformis (the rash for celiac). Three days after my daughter went gluten free she got huge new rash patches behind both armpits where they meet her back -- one of the same places her dad's DH had showed up decades earlier. We had never seen the rash there before. This is not a scientific explanation at all, so please don...
  2. Celiac's Wifey
    I know this is an old dead thread, but it really got to me, because I hadn't seen it before, and it makes me think of my oldest daughter, in a way that makes me feel really really sad. Louis, I am glad you have figured out that gluten was giving you neurological symptoms. I hope you are on the mend. Ennis, your posts have been so helpful...
  3. Celiac's Wifey
    Hi Brass, As you suspect thyroid disease, other autoimmune, GI issues including constipation, brain fog, fatigue, joint pain, the vitamin deficiences and more can all be closely associated with undiagnosed celiac disease. I think you posted here to confirm your 'gut feeling' that your health just isn't right, and to figure out if this is the likely...
  4. Celiac's Wifey
    For many years endoscopy+biopsy was considered the 'gold standard' of celiac diagnosis. That perception has been changing in recent years as multiple studies have shown higher disagreement rates for endoscopic biopsy results than expected between GIs, as more research into early stages of celiac disease have been conducted, and as more information has come...
  5. Celiac's Wifey
    Hey, I understand your frustration with how this disease is diagnosed, especially for kids, and I'm sure just about everybody on the board has had experiences of frustration with the diet and the lack of clarity surrounding so many of the associated symptoms. Even the best experts describe this disease as a "chameleon" and can admit that it is diagnostically...
  6. Celiac's Wifey
    She actually has gone to the pediatrician (maybe three times? I don't know...) At first, thought was that it was from a virus going around. Then when it still seemed persistent they thought it was because she had been milk allergic as a toddler, but they had reintroduced and it had been fine for a couple years. So the thought was that milk protein was bothering...
  7. Celiac's Wifey
    Hey, It sucks you have been sick so long. I was thinking food poisoning too when I saw your first post. (One year at my school PTO volunteers brought in dinner to teachers with a fruit salad bowl and literally every teacher who ate it was sick that night - one was hospitalized! I have been super suspicious of fruit salad sitting out ever since.) This...
  8. Celiac's Wifey
    Hi- So asking for friend. Daughter is seven - family history autoimmune (mom is hashimoto's + adopted gfd almost three years ago and never looked back, even though she herself was never formally tested). Daughter has been having chronic stomach pain + nausea for several months She was just tested - celiac antibodies came back negative...
  9. Celiac's Wifey
    So sorry you aren't feeling well. Ravenwoodglass gave a really great list of things to check. I just thought I'd add, in case it is at all reassuring, that depending on the person, nerve damage and skin symptoms can take longer than a year to heal; if the rashes are DH, it can take up to two years on a gluten free diet for your body to clear it...
  10. Celiac's Wifey
    I am seeking more info from seronegative celiacs (celiacs where the blood tests did not show it) but later biopsy confirmed & from NCGS diagnosed whose symptoms were allieviated on the gfd What blood tests for celiac disease did you do? / Were your numbers totally low / normal? Were you gene typed? What were your results of gene typing...
  11. Celiac's Wifey
    This made me laugh. Just picturing bleeding bowls, leeches, and people in funny hats insisting that transferring the fecal matter is a great idea.... On the other hand I once heard a fascinating podcast about a medieval monk's recipe/instruction set that when properly followed today creates an incredibly powerful antibiotic that can kill some resistant...
  12. Celiac's Wifey
    RMJ, sorry if my reaction was over-the-top.... like your cat dander reaction? I just want to make sure this mom can be thorough in follow up if she needs to be, because I really do think, based on lots of people in my family, that not knowing is bad news. Of course there are false positives and it was good of you to clarify. (But from now on, I will...
  13. Celiac's Wifey
    Well....my three year old is totally fascinated by poop, too, and also finds it totally funny. She likes to rate whether or not her poop is 'de-cust-ing.' (disgusting) Oddly, this is a label only some poop gets.... I guess poop that cures celiac disease would be not de-cust-ing? I remember reading about fecal transplants a few years ago (not in...
  14. Celiac's Wifey
    My daughter has mildly clubbed toenails (can't tell about finger nails because she bites them). I am very happy your nails 'unclubbed.' My daughter has only been on the GFD for a little over a week..... I hope her nails start to grow normally too.... that would be great! Clubbed nails are linked with celiac disease/other GI problems in a couple places...
  15. Celiac's Wifey
    Best wishes to your family & especially your daughter! I think my daughter's gene test results took about five days. The gene tests generally look for HLA DQ2&DQ8 haplotypes, because these are the best understood genetic markers associated with the disease -- and some of them are starting to be associated with specific types of celiac damage...
  16. Celiac's Wifey
    Okay, RGM --- but from what I've read this is apples and oranges. They aren't equivalent types of testing, especially when considering false positives. For IgE allergy testing the false positive rates for both the skin prick tests and the blood tests are at 50-60%: https://www.foodallergy.org/life-food-allergies/food-allergy-101/diagnosis-testing...
  17. Celiac's Wifey
    Hi Aussiemom - First up, I'm sorry your daughter is sick. I know that sucks. My daughter had a high test result on the Deamidated Gliadin IgG test (in U.S. called DGP-IgG) and was negative on TTG-IgA with total IgA serum being normal. We have a really strong family history of celiac disease, so we were on watch. Our daughter was given...
  18. Celiac's Wifey
    Hey there - just offering some anecdotal evidence - I'm married to a celiac. He had a vasectomy three years ago after we knew we were done having children. He said he feels great. Everybody is different, but fwiw, he has a physical every year and nothing else has cropped up in the meantime.From my perspective, I'm so glad he did. Things have been great and...
  19. Celiac's Wifey
    Yep. There are lots of biopsy confirmed celiacs without DQ2 & DQ8, despite what the websites say. As far as I know 03:01 is DQ7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4580462/ It is linked to celiac in the med research for a long time, mostly investigated with DQ2&8 but has more recently come under scrutiny as an independent...
  20. Celiac's Wifey
    Updates Daughter 1 repeat tests: super high DGP-IgG (again). Validating that the first time was definitely not a false positive. Her TTG-IgA still showed nothing, EMA IgA showed nothing. Rast allergy blood test (11 proteins, IgE) showed nothing. Thyrotropin test came back high - hypothyroidism. No measurable thyroid antibodies (yet? not yet hashimoto...
  21. Celiac's Wifey
    So because I have been obsessively thinking and reading about all things celiac lately, I mentioned this curious observation (and the forehead one which we both are entertained by!) to my celiac husband, and it happened to be while we were taking a snack break watching last week's Game of Thrones. (Any other fans out there?) We decided Little Finger...
  22. Celiac's Wifey
    Sorry. Couldn't get this quote to go in correctly. See post above.
  23. Celiac's Wifey
    I wasn't trying to suggest not to take it seriously, or that it isn't celiac, or anything like that. Just that there might be manifestations of a problem with wheat that won't show up in her daughter's upper intestine. To be clear, even if they don't, I absolutely believe her daughter may have a serious and complicating problem with wheat or gliadin, that...
  24. Celiac's Wifey
    Hi, So sorry your daughter isn't feeling well, and that the testing process has raised more questions. (We are going through something similar and I know how tough if is to watch a sick kid!). Also not a doctor, but wanted to clarify some things about your testing. From what I think I see , I think your daughter had a high AGA-IgG level, not...
  25. Celiac's Wifey
    Hey - autoimmune thyroid and celiac disease are besties as far as I can tell. Hashimoto's Thyroiditis (hypothyroid) was one of the first 'findable' problems for my sis-in-law (she had plenty of inconsistent GI symptoms, and unexplained infertility, but she was in the tiny percent of sero-negative celiacs, where multiple blood tests over multiple years didn...
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