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

Newby From Uk

flowerqueen

Recommended Posts

flowerqueen Community Regular
flowerqueen
Posted

Hi everyone! I was diagnosed as Coeliac in November last year by having biopsies at hospital after a L--O--N--G drawn out and exasperating time. I also have Diabetes, and an under-active thyroid, nerve pain due to spine degeneration, IBS and dairy intolerant. I have managed quite well since going gluten free, but recently my internal 'shakiness' and muscle weakness have returned. (last time the doctor I saw said it was due to very low ferritin levels and given iron to take). I went to see a different doctor this morning who said that low ferritin levels should not have caused this shakiness and asked if I suffered from anxiety :angry: I felt patronised as I know this isn't what caused the problem. She has arranged for me to have blood tests on Wednesday to re-check thyroid, ferritin and vitamin D levels etc.

What I would like to know ... is it normal to have these 'blips' in the first year of being diagnosed? Also have others had problem with muscle weakness? I am very careful what I eat (in UK they do not think inhaling wheat dust or using lipstick products containing wheat should cause a problem, and finding alternatives is very difficult). I feel medicine is more advanced in this field in USA and wondered what others' on the forum's views are?

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

Celiac.com Sponsor (A8-M):


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. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      If you were wondering why milk protein bothers you with Celiac Disease. Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
    2. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      My TMJ ended when I lost a middle lower molar. I had an amalgam filling from youth (1960s) that failed and the tooth broke. I had what was left pulled and did not bother to replace it. My bite shifted and the TMJ went away. I just had to be careful eating M&M Peanuts because they would get stuck in the hole.
    3. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      ttg iga high (646 mg/dl) other results are normal

      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point...
    4. Wheatwacked
      - Wheatwacked replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      ttg iga high (646 mg/dl) other results are normal

      So, since total iga 646, was high , was tTg iga even tested? It is not uncommon to test negative for antibodies and even biopsies to still have Celiac Disease. Many on this forum have gone 10 years testing negative and surviving multiple misdiagnoses before finally being diagnosed as celiac. If trial GFD after all the negative tests are concluded...
    5. Wheatwacked
      - Wheatwacked replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Fiber Supplement

      If you don't like prunes, Figs are rich in fiber, with 3-5 dried figs providing about 5 grams.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,342
    • Most Online (within 30 mins)
      7,748
    Mariebelle
    Newest Member
    Mariebelle
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      My TMJ ended when I lost a middle lower molar.  I had an amalgam filling from youth (1960s) that failed and the tooth broke.  I had what was left pulled and did not bother to replace it.  My bite shifted and the TMJ went away.  I just had to be careful eating M&M Peanuts because they would get stuck in the hole.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point to other health issues, some of them potentially serious, or it can mean nothing. But it doesn't look like you have celiac disease.
    • Wheatwacked
      ttg iga high (646 mg/dl) other results are normal

      By Wheatwacked · Posted

      So, since total iga 646, was high ,  was tTg iga even tested? It is not uncommon to test negative for antibodies and even biopsies to still have Celiac Disease.  Many on this forum have gone 10 years testing negative and surviving multiple misdiagnoses before finally being diagnosed as celiac. If trial GFD after all the negative tests are concluded brings improvement, will you continue to eat gluten and suffering since the doctor says you are not sick? Your list of symptoms, mostly unrelated to each other, certainly fits the pattern of celiac disease.  Do you really have nine different diseases, all with cause unknown?  
    • Wheatwacked
      Fiber Supplement

      By Wheatwacked · Posted

      If you don't like prunes, Figs are rich in fiber, with 3-5 dried figs providing about 5 grams.
×
×
  • 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.