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

Elimination Diet-hoping To Stop Myoclonus!

sylviaann

By sylviaann
in Coping with Celiac Disease

Recommended Posts

sylviaann Apprentice
sylviaann
Posted

I discovered a thread on this topic from this past July and from a few years back

Ravenwood, I hope you see this as I am looking to start a serious elimination diet and hope you can help me. There was an old Thread where you disussed your elimination diet (turkey, sweet potato, rice, and cranberry juice).

I am super sensitive and suffer from myoclonus if I ingesta drop of gluten or use cosmetic products containing gluten. I have been truly gluten-free for approx five months (after a learning curve of six months) and I still cannot rid myself of the myoclonus. Some nights are better than others but it is ruining my life (severe sleep deprivation). Since I keep running into possible hidden gluten sources, I have decided to start an ELIMINATION DIET. My dietician ran an organic acids test on me and we know that I am deficient in several of the B vitamins (not B12 though). My test also revealed an exposure to Xylene (a toxic environmental chemical found in gasoline, paint, household cleaning products, plastics, upholstery, mattresses, carpeting, etc.). My dietician started me on the Metagenics Ultraclear medical food approx. a month ago.

Here are my questions for you...........1.Are you Super Sensitive to trace gluten and cross contamination. 2. Are there any vitamin brands (i.e. Country Life) that you found that you can use safely (with no reactions). 3. What brand of Turkey did you eat safely (gluten-free, soy free, dairy free, corn free). I have yet to find a turkey product that did not contain preservatives or possible trace gluten. Can you eat any of the commercially made chicken broths without having a reaction? I would like to start this diet asap but finding safe turkey is a challenge for me. I suspect that I may not be able to tolerate must gluten-free grains.. but I hope I am wrong. My only other "suspects" for possible CC are my C.Life vitamins (I have several bottles) or the Metagenics Ultraclear.

Thank you for your support and ideas to help me get to the bottom of this major frustration.

Warmest Regards,

SylviaAnn

Full Edit Quick Edit

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted

I'm sorry you're feeling so bad. You may want to look up the SCD diet. It has been helpful to quite a few super sensitives and there is quite a long thread on the forum about it. I hope it helps you.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    2. trents
      - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the...
    3. RMJ
      - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    4. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    5. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      Is it gluten?

      By trents · Posted

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      nothing has changed

      By RMJ · Posted

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
×
×
  • 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.