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cyclinglady

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

Everything posted by cyclinglady

  1. cyclinglady
    I have read that article. While, true, testing for antibodies seems to be better than nothing. I have read the DGP may be better for monitoring the gluten free diet, but who knows if that is still true or not? Endoscopies are invasive and not cost effective for constant follow-up care. I would like to see more studies about healing outcomes for...
  2. cyclinglady
    I am happy you know where you stand. What a relief! But I get the shock! It is normal to go through all the stages of grief. But soon things will feel normal, really. Things could certaininly be much worse. Depending on your job and where it takes you, you might not need to get discharged from the Navy. For now, shop the outer wall. Fresh...
  3. cyclinglady
    Oh, here is the gluten free drug list. It is not complete. It is developed by a pharmacist who advocates for celiacs or NCGIs. I check this list, talk to my own pharmacist and call the manufacturer. A hassle, but worth doing. There might be a few other lists, but hopefully others will chime in. http://www.glutenfreedrugs.com/newlist.htm Pill...
  4. cyclinglady
    No, Armour has always been gluten free. The formulation changed a few years back and during the switch, there was a shortage. That has long since resolved. Forest Pharmaceuticals (manufacturer of Armour) was bought out by Activas in 2015. They increased the price! Now it is comparable to synthetic. Imtried to find a good and reputable source about...
  5. cyclinglady
    If she is now at a public school, accommodations can be made for disabilities. Here is a link that explains a 504 plan and an IEP, but you will have to investigate based on your state. Open Original Shared Link Open Original Shared Link Open Original Shared Link Open Original Shared Link i am not very knowledgeable about this subject...
  6. cyclinglady
    I am sorry that your daughter was glutened. I do not have any tips to offer except to drink plenty of fluids, rest, and have her eat as healthy as possible. Celiac disease is not an allergy. It is an autoimmune disorder like multiple sclerosis, lupus, Crohn's, etc. It is different in that the trigger is known -- gluten. Exposure to gluten in...
  7. cyclinglady
    I am confused too. I appears that your blood panel was indeterminate, but that your NP had you on a grain free diet for five weeks prior. You went back on gluten for two weeks (recommendation is 2 to 4) for the endoscopy. Maybe it was not enough time for your antibodies to build up and start attacking your small intestine. Doctors can not say for sure...
  8. cyclinglady
    Here is more information about testing family members. Open Original Shared Link
  9. cyclinglady
    I am on Armour Thyroid hormone replacement and it is gluten free (20 years). I believe Gemini is on Nature thyroid and it is gluten free too. I have never tried the synthetic drugs as my doctors have always like Armour's results. Use the search box in the forum to determine which synthetic drugs are gluten free. Thyroid replacement, although considered...
  10. cyclinglady
    I am not worried about them eating gluten free. If you want to test them for celiac disease, they must be on a diet containing gluten daily for 8 to 12 weeks.
  11. cyclinglady
    Welcome! Glad you found us. Have you had follow-up testing? This may determine if active celiac disease is your source of your current issues. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ If celiac disease is not the source of your joint issues, you might need to go back to your doctor to rule out other autoimmune...
  12. cyclinglady
    I am so sorry that you are suffering! Have you had repeated celiac antibodies testing since your diagnosis? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Depression and anxiety can be attributed do to celiac disease if it is active. It can at least compound your issues with depression. What about your...
  13. cyclinglady
    As long as her celiac disease is not active, she should in theory perform just fine. I would be curious as to how you are handling her food while at college. Can the school safely accommodate her? I would love to hear about your experience in finding a college that meets your daughter's needs and abilities while maintaining her health. I have a...
  14. cyclinglady
    Oh...are you a smoker? That can slow down healing.
  15. cyclinglady
    This happens to me, but the severity has diminished. Mine is due to hormonal shifts (menopause or after childbirth). I used to sleep on beach towels. Kept a stack of them and clean nightgowns on my nightstand. Often had to blow dry my hair in the middle of the night because I was freezing with a wet head in winter. You should discuss this with...
  16. cyclinglady
    Hi! Some celiacs (10%) are seronegative (if CDis suspected, a GI will proceed to endoscopy). Also, not all doctors order the complete celiac panel. This might have occurred with you back in 2014. Open Original Shared Link I would not recommend having your kids go gluten free with you until you have had them tested. I maintain a gluten-free...
  17. cyclinglady
    Trents has given you some good advice and asked some good questions. At three months, your doctor should have ordered another celiac blood panel to see if her antibodies are declining. Then again at six months and one year based on celiac research centers like this one: Open Original Shared Link Your endo should refer your daughter to a PED GI...
  18. cyclinglady
    Hi Delta! Well, it appears that your celiac screening is negative, but that does not rule out celiac disease yet. I would ask your doctor to run the DGP IgA and DGP IGG (even though you are not IGA deficient). Like you, I tested negative to the TTG and EMA tests, but I was positive on the DGP IgA. My intestinal biopsies revealed a Marsh Stage IIIB...
  19. cyclinglady
    Maybe you should have your back checked by a doctor, if the pain is constant and is not improving. You could be developing another AI issue like Ankylosing Spondylitis. At least consider trying to find the cause (compressions fractures, slipped disk, whatever).
  20. cyclinglady
    LOL about the screaming kid at dinner time. I am happy to report that one of my brothers lived on grilled cheese, Captain Crunch and Bacon and Toast (those foods stick out the most in my memory). He eats just about anything now. If I recall, peers had a pretty dramatic impact on his food behavior as he aged (that and maturing). So, do not lose hope...
  21. cyclinglady
    Then I would suggest wearing a mask while running your errands. See if this prevents a flare-up. Lots of folks wear one if they have the flu or a cold. I do not have DH, but from what other members have posted, antibodies in the skin can take a long time to develop or will flare up for no reason at all. It can drive a DH sufferer crazy trying to...
  22. cyclinglady
    No. But I just want to say I am sorry that you took a hit. I hope you recover fast!
  23. cyclinglady
    If you have an opportunity to do the intestinal biopsy, you might reconsider. Adhering to the diet can be very difficult for some people because they tend to DOUBT their own diagnosis. As you know, long-term consequences for untreated celiac disease can be bad. This is a genetic disease and you mentioned the possibility of children. Of course, you might...
  24. cyclinglady
    Do you work in a bakery (or live in a household that bakes using flour), feed farm animals, or plaster walls for a living? Although it is possible to get exposure from gluten suspended in the air, it is uncommon. You have to swallow gluten in order to activate celiac antibodies that attack the gut and/or skin. Look to your diet for any hidden gluten...
  25. cyclinglady
    Before ordering the endoscopy, you would think they would order the complete celiac panel. Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG). You would think that the additional blood tests would be way more cost effective than going directly to endoscopy. The endoscopy usually is still considered...
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