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

This Is So Frustrating


wowzer

Recommended Posts

wowzer Community Regular

I finally noticed in the last week that I can sleep for eight hours or longer, but when I get up I am in so much pain. For some reason my hands and feet are so stiff. I used to take Mobic, but when it when generic I seemed to react so quit taking it 4 months ago. I started the gluten free diet the first of the year. It has helped me in many ways. The best that horrible itching that was just so itchy is gone. I have so many improvements. I just hope this isn't a setback or something else. It's been close to a year from when the itching started. I was given atarax and that doesn't even touch it. I have to say the diet helped that the most. I'm frustrated and not sure what to do.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I am no doctor here, but have you had you blood pressure tested lately? High blood pressure can be the cause of itchiness in the limbs. I am not familiar with your med and not comfortable to comment.

If you have a rash, that is another issue. DH can be a significant side effect of celiac. If so, you need to revisit you diet and make sure that you are TOTALLY gluten free...lotions, shampoo, toothpaste, mouthwash, bath soap, cosmetics that may come into contact with your mouth.

Do a food diary and write down everything that comes in contact with your mouth. If that shows nothing, they venture onto other food intollergies.(spell check says I made up that word)

Perhaps, just a thought to consider.

wowzer Community Regular

Thanks for your input, my blood pressure is fine. I know some of my itching is due to dry skin. I'm being careful with the products that I come in contact with. The stiffness is in my hands and feet. I have had many improvements since I started the gluten free diet the first of the year. I was having trouble sleeping for one. In the last week, I am finally getting sleep. It seems like I'm more sensitive to gluten. Was using a lip gloss, threw it out when I found out. I am still trying to get my family to understand too.

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. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

    2. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,668
    • Most Online (within 30 mins)
      7,748

    Hope Durbin
    Newest Member
    Hope Durbin
    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

    • knitty kitty
      It's important to correct the B12 deficiency first, replenishing the stores of B12 in the body within organs and tissues.    As more B12 becomes available, the body will adjust how much folate to absorb from the diet.  Dietary folate sources include leafy greens, broccoli, and Brussels sprouts, and liver.  (Avoid spinach due to high oxalates and risk of kidney stone formation.). Folate level should be checked in future just in case Celiac malabsorption affects it.   Thiamine deficiency can be found with B12 deficiency.  B12, Pyridoxine B6, and Thiamine B1 all are involved with nerve health and nerve transmission.  These three vitamins together to improve nerve health better than just one of them alone.  They relieve neuropathy and pain, and improve brain function.  You're being an amazing mom for advocating for your daughter's health!  Hurrah! Interesting Reading: B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pmc.ncbi.nlm.nih.gov/articles/PMC6930825/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Thiamin metabolism in vitamin B6 or vitamin B12 deficient rats https://pubmed.ncbi.nlm.nih.gov/859042/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/#:~:text=The neurotropic B vitamins -B1,neuropathies [3%2C 4].
    • Scott Adams
      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
    • Heatherisle
      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
×
×
  • 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.