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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    3. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • 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.