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

Tingling, itching, fatigue, tummy trouble & much more!


Elle1

Recommended Posts

Elle1 Newbie

I've been having strange health issues for about 8 months, and only after seeing a holistic nutrition expert have I begun to wonder if I have a problem with gluten. Reading studies, articles, and personal accounts has made so many light bulbs go off in my head. I would like to share my situation in the hopes that someone out there can tell me what path I should take for the fastest resolution to this problem.
Background: Lifelong digestive issues, off-and-on, incl. diarrhea and constipation but more often painful gas/bloating. Diagnosed with GERD at 29, been on PPIs for 10 years (way too long, I know).
Nine months ago, began to experience a strange sensation in my left shin/calf. Sort of like the skin was mildly tingly and more sensitive than normal, like how sheets feel on your legs when you've just shaved them. Accompanied by fatigue, mild digestive distress, brain fog, tiny twitching of muscles here and there, mostly at night and mostly in my legs. Diagnosed with low B12, put on supplements. Should have stayed on them but got off track with them. Symptoms did mostly go away.
Within last month, leg sensations back, along with fatigue, brain fog, and minor twitching. Some days I have little itches randomly all over my body. I'll scratch one and it disappears, then one pops up somewhere else, and so on. I  have had a lot of other symptoms that I read about in celiac articles at times in the past -- headaches, insomnia, depression, abdominal pains, benign breast lumps, breast tenderness, etc.
I think I'm on the right track with this holistic person, who is helping me to wean off the PPIs. I have read there may be a correlation between PPIs/GERD and celiac. She did the zinc deficiency taste test and it was positive. Just started me on some supplements and said we'd work up to other supplements when my tummy is healed from the PPIs. She is the one who mentioned a gluten problem, told me about the possible link with PPIs and that since I'm very fair, blue-eyed, redhead, that may make it more likely that I don't tolerate gluten.
I have always thought celiac disease was only manifested in severe digestive problems, and since I have only had moderate digestive problems -- albeit off and on for a very long time -- I never considered the possibility of celiac disease. My mom has bad IBS, but to my knowledge was never tested for celiac.
This has been long-winded and I apologize, but since I don't think the holistic person can do a celiac test or order one, where would you all go from here? I don't want to waste a ton of time if this is damaging my body. My GP mentioned MS and wanted to send me to a neurologist, but I feel like it's smarter to explore the diet issue at this stage than wasting a lot of time and money, and scaring myself to death, by going to a neurologist. Thank you in advance to anyone who takes the time to reply.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Do not go gluten free just yet.  Now is the time to ask your doctor for a celiac blood test:

Open Original Shared Link

The catch is that you must be consuming gluten daily in order for the tests to detect any antibodies.  celiac disease a can manfest in so many ways and because this it is often not caught by doctors.  There are over 300 symptoms!

i recommend that you continue to research and advocate for yourself!  Get tested.  If all else fails, then consider a gluten-free diet, but only as a last resort.  Why?  The diet is hard to maintain and more so if you have doubts.  Also celiac disease is genetic.  Your mom very well may have had celiac disease instead of "I be stumped."  You might end up helping yourself and current and future family members.  

I wish you well!  

Elle1 Newbie

Thank you, cyclinglady. I really appreciate your response. I will try to find a doctor who will do a celiac test on me. I have high health anxiety and find myself spiraling into fear that I have something really bad. Not that celiac is not bad, but I would like to get some kind of answer and start working on a solution. Thanks again.

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. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    3. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,119
    • Most Online (within 30 mins)
      7,748

    anagramcat
    Newest Member
    anagramcat
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.