Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

To Rachel-24


elisabet

Recommended Posts

elisabet Contributor

Dear Rachel,I sent you som pm,did not get any answer,maybe there is something wrong with my account.

Can you please tell me how is your diet now? what you eat ?

thanks a lot: Elisabet


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
Dear Rachel,I sent you som pm,did not get any answer,maybe there is something wrong with my account.

Can you please tell me how is your diet now? what you eat ?

thanks a lot: Elisabet

Hi Elisabet,

Sorry I did not get back to you sooner. I did get the pm...there's nothing wrong with your account. :)

Nothing has changed with my diet. Its still very restricted.

I've been eating pretty much the same safe foods for a long time now. Thats organic grass fed beef, oraganic frozen peas and frozen cauliflower. Thats really all I can eat on a daily basis without having reactions.

I do eat other things here and there but I usually react to some extent...especially if I overdo it. Today I ate a ton of salsa and chips but its not something I do on a regular basis.

Yesterday I ate Whole Foods Gluten Free Bakehouse banana bread (I pick the nuts out). So I do eat random "goodies" knowing that I'll react a little but hey....I gotta survive. :)

I dont focus much on my diet...I just eat what I can and focus more on the underlying issues. I knew I had mercury toxicity but it took awhile to get alot of testing done and to get a full picture.

I wasnt well enough to start chelation therapy last year but after working with my Dr.'s I'm doing MUCH better and finally ready for chelation.

I have the mercury burden as well as the gut infections and other problems that go with it. The food inolerances arent going to improve until I start getting rid of the mercury and can successfully treat these infections (yeast has been a big problem).

So for now my diet is still very restricted. If all goes well this might be my last holiday season dealing with so many dietary restrictions. :)

Theres some info on the oxalate thread which might be helpful to you.

The low oxalate diet seems to helping alot of people....I'm not sure how much its helped me but I do avoid the high oxalate foods as most of them are problematic for me.

You can find that thread in this forum (Other Food Intolerance/Leaky Gut Issues).

Anonymousgurl Contributor

Hi Elisabet and Rachel,

Elisabet- Do you have an extremely limited diet as well?

I just thought I'd post to let you guys know that you're definitely not alone...I'm VERY restricted when it comes to my diet as well. My diet consists of beans (only 4 different types), some vegetables (not avacado, my diet has to be fat free) and 2 different brown rice products (dry cereal and pancake mix, made with water). I also eat some fruits, like blueberries and apples but I'm pretty sure I react to them. I react everyday...but like you said Rachel...ya gotta survive! So I feel your pain Rachel, sorry that you've got to go through the same thing! I always hate to hear that someone else has to deal with what I have to deal with, but then again it is comforting at the same time.

But anywho, I'm not sure if you remember Rachel, but we talked before about bioSET and accupressure for food sensitivities. Are you still doing that? How's that going? We have such similar issues, it's very interesting. All of my problems stemmed from heavy metal toxicity as well (Mercury, Arsenic, Aluminum, etc.) and then manifested through Babesia, gall bladder issues, wacky hormone levels, etc.

My body is too weak for chelation as well. Tried it, let's just say that DIDN'T go well. haha. But now I'm undergoing the Methylation process with B12, Glutathione, TMG, DMG, and Sam-e. Right now I'm only on B12 and Glutathione because the TMG and DMG took a lot out of me. Including some metals though, yay!

How are things going for you?

Rachel--24 Collaborator

Hi Peace!!

Of course I remember you. :)

I'm actually doing pretty well despite the restricted diet. I've made alot of improvements...I surprised the Dr.'s even!! :)

I'm not doing BioSET at this time...its been several months since I've gone. The intolerances are a result of my toxicity...so I figure as long as the metals are there things arent going to drastically improve as far as that goes. I would most likely not be able to hold my treatments because I'm still very toxic.

I didnt have many treatments for food sensitivities because I didnt feel I would benefit at that time....my Dr. didnt feel it would help much either. Most of my treatments were focused on the detox pathways and desensitization of metals and fungal issues.

I'll be getting the results of my first DMPS provoked urine test on Monday. It took a year for my Dr. to give the green light for the test since I was so toxic and so reactive.

Yeah....chelation wont go well if your body isnt ready for it...thats why my Dr.'s wouldnt even try it until I got alot better. I started on DMSA (2 months ago) but hopefully I'll be switching to IV DMPS soon. I'll find out on Monday if my Dr. thinks I'm ready for that.

I was doing methyl B12 shots for a few months....along with other supplements to improve methylation. I take glutathione as part of my detox protocol. I'm also still taking antimicrobials, antifungals, antiparasitics, etc...to deal with the infections.

The main thing is getting the metals out....until then I cant really resolve anything. I'm feeling pretty good in the meantime (as long as I stick to my few safe foods). :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,215
    • Most Online (within 30 mins)
      7,748

    toni tay
    Newest Member
    toni tay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.