Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

ehb

Advanced Members
 View Profile  See their activity

  • Posts

    18

  • Joined

  • Last visited

ehb's Achievements

Apprentice

Apprentice (3/14)

  • One Month Later
  • Week One Done
  • Collaborator Rare
  • Conversation Starter
  • First Post

Recent Badges

1

Reputation

  1. ehb
    @knitty kitty I have an appointment to go over the results tomorrow. Vitamin D was in the normal range. I’ve decided to start the gluten contamination elimination diet, while avoiding nightshades as recommended by the AIP. I am still hoping to get support from a nutritionist or advice from the doctor about supplements to make sure I’m getting enough nutrients. I’...
  2. icon knitty kitty reacted to a post in a topic: Refractory Celiac disease - what to do
  3. ehb
    @knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily
  4. ehb
    I'm also already struggling to get the motivation to eat because of the anxiety around food, not being able to eat the things that I am craving, and the amount of time and effort that goes into preparing every single meal, so I worry that increasing the restriction will just make it harder and harder to eat. Thank you all for all the suggestions and...
  5. ehb
    Thank you @knitty kitty this is all very helpful insight, and I was considering doing a strict elimination diet like this. I was considering the one from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC5691745/ which seems a little shorter/less restrictive? But I see how the AIP diet could be better for addressing the general inflammation/autoimmune...
  6. ehb
    Oh I also drink wine occasionally - I understand the typical recommendation is that wine is gluten free but I don't know how to handle the possible introduction of gluten with fining agents or oak barrels sealed with wheat paste
  7. ehb
    @Scott AdamsThe only restaurants or prepared food that I have eaten outside of my home for the last 6 months are from dedicated gluten free restaurants or facilities, except for once in February at a place that had a gluten free night where they deep clean the kitchen and are dedicated gluten-free for the day, and twice in April (due to out of state job interviews...
  8. ehb
    Thank you, I think with the initial blood tests they did actually do the IgA tests first to make sure those are normal! I am wondering if there are any tests that actually test for the presence of the gluten protein? From my understanding, all of these test for gluten antibodies, which in the case of refractory celiac would switch to a gluten-independent...
  9. ehb
    @RMJ what is the DPG test? I think my doctor never had me do that
  10. ehb
    Thank you @Scott Adams and @trents this is very helpful, and I think I have some solid ideas to bring to my doctor (corticosteroids, testing for chron’s, increasingly strict gluten-free diet) @RMJ thank you this is definitely reassuring as well, I’m feeling frustrated and hopeless because I have gone through a similar progression of increasing strictness, an...
  11. ehb
    I am wondering how you developed this supplementation regimen? Was it just through trial and error? Did you base this trial and error on blood tests or symptom improvement? It cost me $300 for the blood tests, so I would prefer not to do those regularly
  12. ehb
    Thank you, @Scott Adams I am wondering if these additional food intolerances could explain the continued tTG-IgA elevation and villous atrophy? Am I required to eliminate these potential intolerances in order for my gut to heal, or could it heal on it's own with just the gluten free diet?
  13. ehb
    I hear you, but I am not sure where to go from here if there is a possibility that it is cause by something other than celiac and gluten. What other things should I be getting tested for and how? If I can't trust the doctors, who can I trust? How can I be sure that it is not from small amounts of gluten that are impossible to eliminate? Would you recommend...
  14. ehb
    I have changed my toothpaste, and all hair/face/body care products to be gluten free. When I pick up prescription medications I ask for the full ingredients list to check for possible gluten sources, and don't take advil anymore because they cannot verify it to be gluten free. I am not sure how to change my diet further, but please let me know if you have...
  15. ehb
    @trents Thank you, but it is still not clear to me what else other than celiac disease could be causing the combination of increased tTg-IGA and villous atrophy? when I asked my doctor about other possibilities, he said it is only celiac disease and gluten that could be causing this. Do you have any advice about how to approach my doctor about this, or what...
  16. ehb
    thank you @trents ! I am reading through these, and it gives some clarity on the other possible causes of villous atrophy, but given that I still have high ttg levels, I am thinking that the most likely cause is still the celiac disease, and any treatments for other causes would not address the increased ttg levels and villous atrophy caused by that?
×
×
  • Create New...