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

Celiac Disease And Neurological Disorders

lapetit8

By lapetit8
in Related Issues & Disorders

Recommended Posts

lapetit8 Explorer
lapetit8
Posted

Hi Everyone,

I was reading through some past messages on this board and noticed that a lot of people seemed to have Ehlers-Danlos syndrome (hypermobility).

Ehlers-Danlos syndrome (EDS) is commonly associated with other neurological disorders such as Chiari malformations, Syringomyelia, Spinal Stenosis, Cranio-Cervical Instability, Spinal Cord Tethering. In fact, all of these neurological diseases can be related.

I have a Chiari type 1 malformation (formerly known as an Arnold Chiari Malformation - type 1) and my doctor who is very prominent in the study of Chiari 1 malformations and related disorders has noticed that a large percentage of his patients have Celiac Disease. A majority of his other patients seem to have IBS or other GI problems. So, my doctor is currently doing a study about the relationship between these disorders.

I was curious how many people on this message board have one or more of the above mentioned disorders? When I asked how many people have Celiac Disease on a Chiari messageboard I got an overwhelmingly positive response.

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

Celiac.com Sponsor (A8-M):


DonnaD Apprentice
DonnaD
Posted

I had never heard of any of the conditions so I did a quick google and was surprised to find that it could be linked to fibromyalgia and a dowagers hump (I'v got both)

Open Original Shared Link

I had an MRI of my shoulder only when they were trying to find out if I needed surgery for the impingement.(I didn't) and I'v also had radiofrequency treatment under x-ray to burn off the nerves in my cervical spine (neck) and mid thorasic region (bra strap level!). That wasn't much help either. The trouble with fibro is the symptoms are the same as many other illnesses.

Finding yet another condition linked to gluten would not surprise me at all!

I will watch this subject with interest.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi Everyone,

I was reading through some past messages on this board and noticed that a lot of people seemed to have Ehlers-Danlos syndrome (hypermobility).

Ehlers-Danlos syndrome (EDS) is commonly associated with other neurological disorders such as Chiari malformations, Syringomyelia, Spinal Stenosis, Cranio-Cervical Instability, Spinal Cord Tethering. In fact, all of these neurological diseases can be related.

I have a Chiari type 1 malformation (formerly known as an Arnold Chiari Malformation - type 1) and my doctor who is very prominent in the study of Chiari 1 malformations and related disorders has noticed that a large percentage of his patients have Celiac Disease. A majority of his other patients seem to have IBS or other GI problems. So, my doctor is currently doing a study about the relationship between these disorders.

I was curious how many people on this message board have one or more of the above mentioned disorders? When I asked how many people have Celiac Disease on a Chiari messageboard I got an overwhelmingly positive response.

I am an Ehlers Danlos person and also wondered if there might be a connection because it seems in my family that the ones who are the most mobile are also the ones most severely effected by gluten. The family members with only 'mild' presentations of the hypermobility also seem to be gluten intolerant rather than full blown celiac and wondered if there was a connection. I will be interested in what his research shows, keep us posted if you can.

Canadian Karen Community Regular
Canadian Karen
Posted

Wow! This really threw me for a loop!

I have always had a bad back that "gives" out, and in my early 20's after an MRI, was diagnosed with spinal stenosis. I used to get steriod injections in my spine every six months before they stopped doing it up here (apparently, the doctors were frying their hands as you have to be on an x-ray table while they are putting the injection into the spine......)

Anyway, the doctor back then told me that if someone my age had spinal stenosis, it usually is due to a birth defect. I found that interesting as my grandmother also has spinal stenosis, my mom and sister both have bad backs and also my mom's firstborn was born with spina bifida and died at nine months of age.

I never thought is was linked in any way to the celiac disease though.....

Karen

debmidge Rising Star
debmidge
Posted

so spinal stenosis and spina bifida could be related to celiac? Am I understanding this correctly?

Canadian Karen Community Regular
Canadian Karen
Posted
Hi Everyone,

I was reading through some past messages on this board and noticed that a lot of people seemed to have Ehlers-Danlos syndrome (hypermobility).

Ehlers-Danlos syndrome (EDS) is commonly associated with other neurological disorders such as Chiari malformations, Syringomyelia, Spinal Stenosis, Cranio-Cervical Instability, Spinal Cord Tethering. In fact, all of these neurological diseases can be related.

I have a Chiari type 1 malformation (formerly known as an Arnold Chiari Malformation - type 1) and my doctor who is very prominent in the study of Chiari 1 malformations and related disorders has noticed that a large percentage of his patients have Celiac Disease. A majority of his other patients seem to have IBS or other GI problems. So, my doctor is currently doing a study about the relationship between these disorders.

I was curious how many people on this message board have one or more of the above mentioned disorders? When I asked how many people have Celiac Disease on a Chiari messageboard I got an overwhelmingly positive response.

Her doctor I think was the one mentioning he noticed a link between those malformations and celiac disease. Although, I was the one who mentioned spina bifida in my post (my mom's firstborn died from it). But I do find it interesting that these "birth defects" happen to run in my mom's side of the family - and it is this side of the family that I am certain that the celiac disease comes from. Both of my mom's sisters suffered serious intestinal problems (they were both down to 90 lbs. most of their lives), both had osteoporisis (one of them was so bad that she was bedridden for the last 5 years of her life.....). Yep, I am certain that this is where in my family tree that I got it from.....

BTW, Debmidge, how's hubby?

Hugs.

Karen

nettiebeads Apprentice
nettiebeads
Posted

Hmm, another link in my chain of "coincidences" that make me think my mother is where I got my celiac. She has spinal stenosis and a very pronounced dowagers hump - she used to be 5'10" but now has to look up to me - she's practically bent over in half and is in a wheelchair. How she's lived to 84 I don't know - except for being a plain ole' stubborn Swede, I can't think of any other reason.

Annette

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

Celiac.com Sponsor (A8-M):


sillymomx3 Newbie
sillymomx3
Posted

I have Ehlers-Danlos and Celiac disease. I have three children, my oldest has celiac, my youngest has EDS.

My maternal grandfather (had), mother, sister, niece have Ehlers- Danlos. My father had celiac disease. My mother, sister, niece were all negative for celiac.

Ehlers-Danlos, although it has neurological effects is a connective tissue disorder, a collagen abnormality.

Usually the skin is involved in Hypermobility EDS (type 3), there is easy bruising, a velvety or doughy feel, joint dislocations, and chronic pain. Alot of families (mine included) have symptoms that overlap into other types of EDS.

I suspect that several of my dad's siblibgs had celiac as well. They were all very small and had terrible stomach/colon issues.

Archived

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

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


  • Member Statistics

    • Total Members
      132,394
    • Most Online (within 30 mins)
      7,748
    Graceland.h
    Newest Member
    Graceland.h
    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

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.