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 Our Content
    eNewsletter
    Donate

celiac disease & Neuro Article


AVR1962

Recommended Posts

AVR1962 Collaborator

Article written by Dr Anna Kaplan

At the current time, most adults with undiagnosed celiac disease seek medical care because of atypical symptoms, and often do not have the usual intestinal complaints previously thought to occur in all celiac patients. Sometimes, the first problem that presents itself is in the nervous system.

A wide variety of neurologic abnormalities have been seen in patients with celiac disease. Often these would not prompt treating doctors to think of celiac disease.

While the medical community is learning about the relationship between celiac disease and disorders of the central nervous system, it is not at all clear what about celiac disease causes damage to the nervous system and how it might be specifically treated.

Estimates of the percentage of people with celiac disease that have neurologic complications vary. Some research indicates that as many as 6% to 10% of all patients with celiac disease have some kind of neurologic complication. Other researchers have noted that as many as 36% of adults with celiac disease may have neurologic problems.

As many as 50% of patients with celiac disease may develop what is called a peripheral neuropathy. For some, these problems may occur after the disease is diagnosed. For others, a neurologic complication may come first.

When thinking about problems in the nervous system, it is useful to understand a bit about the parts of the body involved. The brain is considered the central nervous system. It has various parts with different functions. The cerebrum, the main part of the brain controls much of people’s thinking, and actions such as walking and speech. The cerebellum, in the back of the brain plays a big role in balance control.

The spinal cord carries messages from the brain to the rest of the body via nerves that come off of the spinal cord. This is called the peripheral nervous system. The nerves send the message to muscles telling them to move, and bring back sensory information like pain. The messages from these nerves are needed for a person to know where his or her feet are as they walk.

Damage to both the central nervous system and peripheral nervous system can occur in people with celiac disease, although the mechanisms are not well understood.

The most commonly reported problems are dementia (problems with thinking, also called cognition), neuropathy (damaged or inflamed nerves), ataxia (difficulty with balance and walking), and seizures.

Symptoms may occur because of vitamin or other nutrient deficiencies. For example, low levels of vitamin B12 as well as folic acid and other vitamins are known to cause abnormalities in both the peripheral and central nervous system. This can include dementia as well as a peripheral neuropathy.

Vitamin deficiencies can occur as the result of damage to the small intestine. They can be aggravated by other illnesses that occur in patients with celiac disease. Some of the autoimmune diseases associated with celiac disease can contribute to vitamin deficiencies.

When other illnesses are treated, a gluten-free diet is started, and vitamin deficiencies are corrected, the neurologic symptoms may improve. However, that is not always the case. Some nervous system problems never improve.

A peripheral neuropathy, especially one that is symmetrical – the same on both sides – and involves the lower legs and feet should make a treating doctor consider celiac disease. Again, this may be related to a vitamin deficiency, and treatment with a gluten-free diet may or may not improve the neuropathy.

Ataxia – trouble with balance when walking - can occur, with or without other nervous system abnormalities. This is often caused by some kind of damage to the cerebellum. It may or may not improve with a gluten-free diet. Vitamin E has been used with some success to treat ataxia associated with celiac disease.

Other patients, especially children, may have seizures and be treated for epilepsy. A gluten-free diet may lessen the seizures and patients may be able to get off of their anti-epileptic medications.

Cognitive impairment or dementia – trouble with memory, thinking and processing information – can occur with celiac disease. As with most of the other problems, the impairment may or may not improve with a gluten-free diet.

Sometimes a person with celiac disease may have multiple neurologic as well as what appears to be psychiatric symptoms. This can include anxiety and depression as well as psychosis, which means a break with reality. Cases have been reported in which these symptoms disappear when the patient sticks to a gluten-free diet.

Currently, the cause of all these problems is not known. Neurologic symptoms may be another type of autoimmune damage; they may have to do with some of the toxic substances the body makes in response to gluten. Research may give some answers as to why patients with celiac disease often have neurologic disorders.

It is worth looking for celiac disease in patients with some of these disorders, and consequently recommending a gluten-free diet to anyone that does have celiac disease.

Supplemental vitamins are also worthwhile. In the future, there may be specific treatments available. It is believed that early use of the gluten-free diet may in some cases help prevent further damage to the nervous system.

If you have celiac disease and any of these neurologic problems, make sure to discuss them with your doctor. Your doctor should make sure that you do not have any other autoimmune disorders, or if you do, that they are treated.

A trial of different vitamins, including vitamin E might be a good idea, as well as making an even greater effort to stick to the gluten-free diet.

Dr. Anna Kaplan


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Have to watch out that the vitamin E is not made from wheat.... having better luck with those B complex vitamins and the calcium/mag.

I feel sorry for all the undiagnosed, or never figured it out for themselves types of people, who are getting told to take anti depressants or neurotin for the neuropathy because the true cause is unknown, and they are assumed to just need a sort of blocking medication.

AVR1962 Collaborator

Have to watch out that the vitamin E is not made from wheat.... having better luck with those B complex vitamins and the calcium/mag.

I feel sorry for all the undiagnosed, or never figured it out for themselves types of people, who are getting told to take anti depressants or neurotin for the neuropathy because the true cause is unknown, and they are assumed to just need a sort of blocking medication.

Do I ever hear ya! This has been so frustrating for me. I have one doc who keeps my vits tested, tells me to do what I am doing. Then the other doc that disagrees with the celiac diagnosis but can't tell me what the problem is who tells me I don't need to take vits. Following the second docs advise really had me hurting recently. I am just now getting some relief by going back to my full strength of B complex. So do docs just guess until they get it right or really is there too little awareness in this area?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...