Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Gluten Neuropathy

stephaniesherie

Recommended Posts

stephaniesherie Newbie
stephaniesherie
Posted

Having been tested I am not celiac, but I have a severe intolerance to wheat and a moderate reaction to gluten/glaiden

So I am having so much trouble finding ANYONE who can relate.

When I have wheat/gluten I get the oddest symptoms 24-36 hours later.

Please tell me someone can relate!!!! Please!

  • dizzy!!!!
  • left leg just gets numbish - I present as normal but it's so aggravating
  • back ache/stiff joints
  • fatigue/no get up and go

Side vent: I went to this other natural dr. who thought it was all bogus and gave me these supplment with other sensitivites I tested positive, INCLUDING a B complex with wheat germ. Needless to say, I don't take those anymore, but it just bugs me how people just stare at me like I'm making these symptom up. Some restaraunts are so cold hearted. I was left with nothing to eat but iceberg lettuce, broccoli & onions the other day. I was nearly in tears because I didn't bring any food w/me.

Link to comment
Share on other sites
  • 2 months later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


katie-sbb Newbie
katie-sbb
Posted

Having been tested I am not celiac, but I have a severe intolerance to wheat and a moderate reaction to gluten/glaiden

So I am having so much trouble finding ANYONE who can relate.

When I have wheat/gluten I get the oddest symptoms 24-36 hours later.

Please tell me someone can relate!!!! Please!

  • dizzy!!!!
  • left leg just gets numbish - I present as normal but it's so aggravating
  • back ache/stiff joints
  • fatigue/no get up and go

Side vent: I went to this other natural dr. who thought it was all bogus and gave me these supplment with other sensitivites I tested positive, INCLUDING a B complex with wheat germ. Needless to say, I don't take those anymore, but it just bugs me how people just stare at me like I'm making these symptom up. Some restaraunts are so cold hearted. I was left with nothing to eat but iceberg lettuce, broccoli & onions the other day. I was nearly in tears because I didn't bring any food w/me.

One of my friends gave up gluten as she gets extremely achy and stiff from eating it, so you're not alone.

Side vent - always think with your own head about anything you ingest!

Link to comment
Share on other sites
LJR Newbie
LJR
Posted

I'm with ya, my doctor tells me im not Celiac, and does not believe I have a gluten issue yet all of my problems whent away when I whent gluten-free, casin free. Anyhow if I hapen to get CC everything comes back for about three days, the joint pain, dizziness, confusion, weakness, depression , constipation, insomnia and yes the leg problems, it feels like worms are crawling thought my leg muscles. Migraines and neck stiffness also becomes a problem. I tell people it's like having the worst flu ever for about 3 days. The confusion and lack of ambition sucks its like losing 100pts of IQ for a few days, I get nothing done, I just stare off into space for long periods of time when I should be working. So Your not alone!

Link to comment
Share on other sites
Framefunnyfarm Newbie
Framefunnyfarm
Posted

Celiac can be very hard to diagnose I had been sick for 5+ years. I didn't present with the usual symptoms so no one picked up on it. I have been scoped but the G.I. wasn't looking very hard and was looking for something SO out of the ordinary it didn't return any results. After being in and out of the hospital for much of last year I was desperate and went gluten free. It saved my life. My stomach symptoms are stomach pain and constipation. And those symptoms are the easiest ones to deal with. My doctor diagnosed me celiac because of my inability to maintain vitamin levels and off of symptoms. I get HORRIBLE brain fog, sadness, fast heart rate, and achey muscles when I have had any gluten or even have been cross contaminated. It doesn't matter what they call it, the diagnosis is the same. Have your vitamin levels been checked?

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748
    TT24
    Newest Member
    TT24
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      This forum might be the last hope I have in my life. Please I beg you

      By knitty kitty · Posted

      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      This forum might be the last hope I have in my life. Please I beg you

      By BluegrassCeliac · Posted

      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...