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

Anyone Suffer From Neurological Symptoms?


Maddi

Recommended Posts

Maddi Community Regular

You guys... this really means a lot to me. I usually eat a banana a day, if not half. But I will definitely eat at least one a day now! I knew bananas were good but didn't know they we that good for the digestive system. And I'm juicing carrots, an apple, and celery in the mornings. At least that way I'll get nutrients somehow especially since now I have Epstein's Barr. /: I was complaining about my night vision and I started jucing carrots 4 days ago and I can see so much better at night!!!!! Honestly if someone told me that I wouldn't believe them! And my gastro a while back told me about pureeing my food if I was really worried about my weightloss. That way it'll be easy to digest. I might do that until I get rid of this virus. Apparently my neuro symptoms could be related to the Epstein's Barr virus! Hopefully I can kick this virus' butt quickly!


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Sounds like you are on the right path, Maddi, and taking control. I predict that you are going to be feeling better very soon and gaining weight too. :)

Maddi Community Regular

Thanks for your positive vibes!!! And know I'm sending some your way too! (: I'm trying to stay positive through allll this tiredness that I'm feeling at the moment!!!

MomBTired Newbie

Hey, I actually have some answers for some of you. My son has Celiac, horrible pain, muscle spasams and twitches like crazy, went through 14 crazy doctor years with him and it took that one neurologist who said, of course he's a mess, more than 60% of people with Celiac disease have small fiber neuropathy. His nerve/skin biopsy came back positive. Celiac and neuropathy DO go together. This doctor told me if you have Celiac, it's not Fibromyalgia, it's this form of neuropathy. Years ago, he had a colonic manometry which showed the nerves were not functioning in his colon, so it eventually was removed. No one tried to figure out why. All this is rare in pediatrics. How rare? We didn't know he had Celiac until he dermatitis herpetiformis showed up. Pediatric derm never treated it before, gave him methemaglobinemia. Switched his meds then tore up what was left of his gastro system. Switched hospitals for derm and told her creams only. I had enough.

 

So after it all, my son has Vit D deficiency, iron deficiency, Celiac, DH, asthma, GERD, Small Fiber Neuropathy, recently positive for autonomic dysfunction (autonomic Neuropathy), Hashimoto's disease, POTS, sleep apnea, PTSD (not sure why, dorks!), throw in a little anxiety problems. All found positive in tests. Now with the gastro issues, my son has had more scopes than an average 80 yr old. He didn't come up positive with Celiac until almost 3 years ago. That was around 10 years with negative results. Now he's so extremely sensitive he breaks out with the blisters.

lol Newbie

I discovered I had a gluten intolerance (sensitivity?) after suffering neurological symptoms, mainly tingling of my extremities and finally my face.  (I'm 66 years old.) With the help of a naturopathic doctor, three months off gluten and all symptoms disappeared.  My GI doc wanted to biopsy for celiac disease, so I went back on gluten for 3 months.  All my symptoms returned, but the biopsy was negative.  I hadn't had any digestive issues, so I was sure the test would be negative.  I had already been off dairy for a year due to respiratory symptoms.  Now, nearly 2 years later I continue to do well--but have developed GERD symptoms that are primarily shortness of breath--not heartburn!  Just saw some of these issues in these postings, so thought I'd put in my 2 cents!  I certainly feel fortunate to have such a mild problem compared to everyone here!

Maddi Community Regular

MomBTired: Wow your son seems to have a lot of issues which who knows if they were caused by a delayed diagnosis! /: That's what I'm afraid of. My problems have gotten worse. They started to be gastrointestinal and now they're neurological. I now have a virus which I know is bc of my low immune system. Hopefully your son now is doing better. I plan on seeing a new gastro and after I get over this virus I might try the gluten challenge again. My dad is going tomorrow to get tested. I'm also going to encourage my grandmother to get tested (she has hypothyroid and "ibs"). You've given me hope that I'll eventually get a diagnosis after 2 1/2 years. Thanks so much. It helps me to know I'm not the only one who has struggled to get a diagnosis.

Maddi Community Regular

Lol: Thanks for your response. I guess it's something to think about since glutem intolerance has a lot of the same symptoms as Celiac. Unfortunately my symptoms are are over the place and honestly I really think it's Celiac only bc of my weight loss and pretty bad immune system. Last year I got so many infections and now I have Epstein's Barr. /: I'm glad your symptoms disappeared and I hope with time mine do too with a strict gluten-free diet. (:


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.

  • 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. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    3. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    4. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748

    Dye42
    Newest Member
    Dye42
    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

    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
×
×
  • 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.