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

Bfs And Celiac?

Jennhaz

By Jennhaz
in Related Issues & Disorders

Recommended Posts

Jennhaz Apprentice
Jennhaz
Posted

I dont know if anyone remembers me but back in June I did not know if I had celiac disease or not but have been on a gluten free diet. I was getting twiches, vibrations and tremors all over my body.. Some people on here thought I may have neuropathy but I dont. I have BFS Benign Fasciculation Syndrome and I was wondering if celiac could cause this? My Dr. doesnt think so but always wonder. I have to have a celiac test done but have been on gluten free diet for like 5 months...I never had any big problems except for bowel problems once in a blue moon but hives I would get when I would eat wheat. Anyway I was just wondering if anyone else has BFS with celiac?

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

Celiac.com Sponsor (A8-M):


Guest katzmeow21
Guest katzmeow21
Posted
I dont know if anyone remembers me but back in June I did not know if I had celiac disease or not but have been on a gluten free diet. I was getting twiches, vibrations and tremors all over my body.. Some people on here thought I may have neuropathy but I dont. I have BFS Benign Fasciculation Syndrome and I was wondering if celiac could cause this? My Dr. doesnt think so but always wonder. I have to have a celiac test done but have been on gluten free diet for like 5 months...I never had any big problems except for bowel problems once in a blue moon but hives I would get when I would eat wheat. Anyway I was just wondering if anyone else has BFS with celiac?

I'm sorry but I don't recall reading your initial post but I can say that I had a lot of muscle twitching(spasms) all over my body but more so on my calves. I also had this vibrating type feeling in my legs but not the tremors.....

I would suggest getting all your blood checked for vitamin deficienc;y from folic acid, B12, folate, Vit D etc. and see how that comes out. Since being gluten free one year now I have gotten much better but will still get the muscle twitching every now and again. I'm thinking it seems to happen after I've had vinegar but I'm still not sure.

Don't stop at Doc #1 if you don't like the answer and you have doubts. Never stop researching and taking their word as final. They certainly don't have all the answers.

Jennhaz Apprentice
Jennhaz
Posted
  • Author

I have had all bloodwork done and went to a neurologist who dx with Benign fasciculation syndrome. They do not know if it is a brain, muscle or nerve disease. Anyway it is benign and I belong to the BFS support group and none of them have had any problems with gluten, I dont even know if I do but will get tested. I guess my question is also if I eat gluten will my neuro problem get worse? Do you guys cheat sometimes?..Thank you..Jenn

Jestgar Rising Star
Jestgar
Posted

I have fasciculations and have all my life. They haven't changed at all since going gluten-free.

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. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748
    DRIZZE
    Newest Member
    DRIZZE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.