Part 1 Of 5 Part Series: Could A Gluten Intolerance Cause Amyotrophic Lateral Sclerosis (ALS) Or Lou Gehrig’s Disease?

February 17, 2011 · Filed Under ALS 

I would like to dedicate this series of posts to my grandfather, Jack, who died from amyotrophic lateral sclerosis (ALS) when I was in my early teens. He was a tall thin man who was always smiling and maintained a positive outlook even in the midst of ill health. His daughter (my mother), my daughter and I all have celiac disease (one type of gluten intolerance). I have to wonder whether his symptoms were really associated with a gluten intolerance. Over the past six years, I have come across a great deal of research linking neurological symptoms to immune reactions to gluten. This peaked my curiosity. Did the ingestion of gluten trigger a cascade of immune reactions, eventually leading to the development of ALS in my grandfather. This is an intriguing question and I believe the connection is very possible. With all forms of gluten intolerance, it seems very plausible that autoimmune factors (anti-neuro antibodies), inflammation, and malabsorption of nutrients could lead to the neurological symptoms associated with ALS.

Why haven’t doctors  investigated this possible connection? The answer is a sad reality. Many people with a gluten intolerance, including celiac disease (CD), dermatitis herpetiformis (DH) and non-celiac gluten intolerance remain undiagnosed. For example, with CD, over 90% of individuals remain undiagnosed. Likely, it is even higher in non-celiac gluten intolerance since it is more under-recognized by doctors than celiac disease. Unfortunately, many doctors are not very aware of the many elusive symptoms associated with gluten intolerance and as a result, only the symptoms (ie. possibly ALS) are diagnosed, not the disease. Typically, it isn’t on the doctor’s radar so it often isn’t investigated as a cause.

What Is ALS?

Amyotrophic lateral sclerosis (ALS) is also known as Lou Gehrig’s disease.  This disease is a progressive neurodegenerative disease that affects the nerves of the spinal cord and brain. Due to interrupted neuronal impulses, the affected person’s muscles are unable to move effectively and this progressively leads to loss of strength resulting in muscle weakness. Unfortunately, there is a very poor prognosis, people with this disease generally die within 5 years of diagnosis due to respiratory failure (atrophy of the muscles that support respiration). However, some do manage to live past 10 years.

Sadly, the current treatments are not very helpful and there is no cure.

Is There Hope?

I can’t make any claims that ALS is definitely caused by a gluten intolerance, but I’m suspecting that it could be. There are many studies showing an association between gluten intolerance and neurological symptoms (i.e. Gluten Ataxia). If gluten isn’t the culprit, then perhaps IgA and IgG mediated reactions to other foods could be the culprit. IgA and IgG antibody mediated reactions to gluten can cause autoimmune diseases (celiac disease, dermatitis herpetiformis, non-celiac gluten intolerance) so why couldn’t IgA and IgG immune reactions to other foods cause autoimmune activity that could ultimately contribute to ALS.

This series of posts will highlight why this association may be possible, how lectins (lectins are in certain foods) may contribute, and how individuals with ALS may want to rule out a gluten intolerance along with testing for other reactions to foods since these reactions can lead to neurological symptoms. More research is needed, but for now, people afflicted with ALS might want to consider these possibilities.

If some patients explore these options and have positive results, then there could be much to gain.

The Series

Over the next 6-8 weeks, I’ll be exploring the possible connection between ALS and gluten. Please join in, make comments on the posts and share your opinions and your stories.

The Series Includes:

Part 2 Of 5 Part Series: How Could A Gluten Intolerance Cause ALS

Part 3 Of 5 Part Series: How Could A Gluten Intolerance Cause ALS In Various Age Groups

Part 4 Of 5 Part Series: How could A Lectin Intolerance Contribute To ALS

Part 5 Of 5 Part Series: Some Final Thoughts About ALS And Gluten

References

1. ALS Society Of Canada http://www.als.ca

2. Wendy Johnston. Amyotrophic Lateral Sclerosis: A Clinical Look At The Disease That Renders A Body Helpless. Case Conundrums. PDF at http://www.als.ca

Comments

18 Responses to “Part 1 Of 5 Part Series: Could A Gluten Intolerance Cause Amyotrophic Lateral Sclerosis (ALS) Or Lou Gehrig’s Disease?”

  1. Tweets that mention Part 1 Of 5 Part Series: Could A Gluten Intolerance Cause Amyotrophic Lateral Sclerosis (ALS) Or Lou Gehrig’s Disease? : CeliacNurse -- Topsy.com on February 17th, 2011 11:16 am

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  2. Faydra Jones on February 17th, 2011 7:22 pm

    Great post! I’m looking forward to this series. Lot’s of food for thought… :-)

  3. Shelly on February 17th, 2011 8:11 pm

    Faydra,

    Thank you! I hope you enjoy the series. The neurological symptoms associated with a gluten intolerance are quite fascinating:)

  4. Jenny Johnson on February 18th, 2011 3:52 pm

    Glad you are covering this….we have often wondered the same thing. My husband’s, father’s brother died from ALS.
    My son and husband are Celiac & I often wonder if his father is Celiac as well…he has yet to be tested. We can hope & pray.
    Thank you again

  5. Shelly on February 19th, 2011 12:51 am

    Jenny,

    Thank you for your comment and for sharing your story. Yes, celiac disease can definitely run in families. It is good for all family members to be tested:)

    When your father in law is tested, keep in mind that celiac disease is only one type of gluten intolerance. Many people test negative for celiac disease, but still have a gluten intolerance (non-celiac gluten intolerance). For example, with gluten ataxia, many do not have intestinal villi damage characteristic of celiac disease.

    I hope you enjoy the series,
    Shelly

  6. Amy on February 21st, 2011 3:51 pm

    Hi. My mom recently told me I was a celiac as a baby (now 51). I told her you don’t outgrow that. I am having peripheral neuropathy and hoping not ALS. Toes moving on their own and tripping over my left foot. I am going gluten and casein free for a while to see if that helps. yuck. My autistic son has been on it for 11 years.

  7. Shelly on February 22nd, 2011 11:52 am

    Amy,

    Yes, you are right:) Celiac disease is a permanent autoimmune condition and the maintenance of a gluten-free diet for life is recommended:)

    As always, review all your symptoms with your physician to check into other causes. Celiac disease can cause nutrient deficiencies and this can lead to neurological symptoms as well. Nutrient deficiencies should be addressed promptly so that permanent damage doesn’t occur.

    Further testing by an naturopathic doctor can help rule out other reactions to foods. This can help clarify if casein is a problem.

    Best of luck,
    Shelly

  8. Tiffany on February 25th, 2011 1:17 pm

    Hi-

    My dad was diagnosed with ALS about 18 months ago. I have been trying to convince he and my mom to go gluten, msg and aspartame free to see if maybe we would encounter a plateau of his symptoms. My daughter has suffered from chronic hives since the age of 2 and is very short (consistent with gluten intolerance) she was also a very fussy baby and we never knew why-she went from crying for 18 months to chronic hives for almost 13 years and continuing…

    For obvious reasons I am curious about a possible connection and am intrigued by what I’ve read online about the possible correlation- my gut tells me doctors are missing something and you could be on the brink of something major. My dads symptoms started shortly after he started taking statins (Crestor) and guess what, there is gluten in excess in all statins!

    Looking forward to more from you-

  9. Nancy on April 10th, 2011 8:15 am

    Within the past eight months I put myself on an IBS diet as my digestive system kept worsening. It has definitely helped. Then I did some research on gluten intolerance and yes, Celiac Disease, and deducted that the latter could definitely be at work in my family once I examined all of the diseases present that we have inherited; a gazillion allergies to everything, coronary artery disease, atherosclerosis, Parkinson’s, you get the gist. My maternal grandfather and his daughter both had shaky heads and hands. It was never medically diagnosed. My brother who will be 80 next week and has a very rare blood cancer, Waldenstrom’s Macgroglobulinemia. Yesterday, I learned that my Uncle who is in his late 80′s was diagnosed with ALS which is why I am on this website now. I plan to have the Celiac test done as soon as possible and am trying to find out my uncle’s exact diagnosis as I understand only 10% of ALS cases are inherited.

  10. Susan Ferguson on September 13th, 2011 8:33 pm

    I was diagnosed with ALS in July. Today I tested positive for wheat, milk, casein and tapioca allergies. Celiac disease is rampant in my family. My paternal two uncles and aunt have it.
    My Chiro was the one who suggested the link between gluten and als. The als neuro’s scoff at the link.

  11. NoGluten on September 16th, 2011 10:58 am

    I’ve often read that the neurological conditions excarbated by gluten require the strictest level of dietary compliance and that mistakes can cause a rapid return of symptoms which subside slowly. Have you found that to be the case?

    I wonder if the proposed standard of 20 ppm may be too much gluten for some of the most sensitive.

  12. Shelly on October 7th, 2011 9:54 am

    Hi NoGluten,

    Yes, some people with neurological symptoms can have a rapid return of symptoms, some others have a gradual return though. Everyone is unique in their presentation and with their reactions/symptoms.

    The same appears to be true for the resolution of symptoms. Some symptoms, like a headache, may resolve quicker than other symptoms like neuropathy.

    With regard to the proposed standard of 20ppm, the tests that look for a reaction to this level of gluten are not fool proof, false negatives can easily occur. Therefore, I suspect that 10 or 20ppm could be too much:) More research with the use of better tests may help to shed more light on this issue. For now, I personally aim for 0 ppm:)

    The additional presence of an IgE mediated reaction to gluten (or just wheat) needs to be taken into consideration as well since celiacs (or anyone with a gluten intolerance) can have an IgE mediated reaction in addition to the typical IgA or IgG mediated immune reaction to gluten. This may pose an additional risk for a reaction.

    I hope this helps,
    Shelly

  13. Shelly on October 7th, 2011 10:12 am

    Susan,

    Thank you for your comment. I mentioned a few things below to keep in mind while you are exploring your options:)

    Keep in mind that people with a gluten intolerance can also have an IgE mediated allergic reaction to wheat or gluten. Therefore, the Chiropractor may have just picked up the wheat allergy, but not the gluten (false negatives can occur). With your family history, it would be best to get the tests for a gluten intolerance as well. Definitely all relatives of someone with CD should be tested. This is especially important prior to starting the GF or wheat- free diet since the diet can cause false negatives in the tests for a gluten intolerance.

    If you have a gluten intolerance, avoidance of wheat (only one type of gluten) may only remove some of the symptoms (if your symptoms are related to a gluten intolerance) since you would still be consuming gluten with the ingestion of rye, barley, and some types of oats. I suggest keeping this in mind while making your decisions:) If you have CD, nutrient deficiencies could be contributing to your symptoms as well.

    I wish you the best,
    Shelly

  14. Heidi Gallegos on June 18th, 2012 5:55 pm

    My mom died of ALS 3 years ago and had a reaction to Statins right before symptoms. My daughter has just been diagnosed with gluten intolerance and I am getting tested this week. All this is very thought provoking.

  15. Steinar Hultin on December 26th, 2012 6:49 am

    Dr. Kurt Mosetter, who practices in Germany, says that both gluten and cow milk products contributes to the development of ALS and other autoimmune diseases. Supposedly it is the milk protein casein, gluten and sugar which first contributes to the development of insulin resistance, and next to the development of ALS. Therefore the most effective diet is both gluten- and milk-free, and also avoiding sugar and fast carbohydrates.
    You can get more information on http://www.myoreflex.de

    Steinar (from Norway)

  16. Mercedes on May 12th, 2013 8:24 pm

    My mother died of als 5 years ago. About 3 years after her passing, we found out that my nephew, sister, and brother all have celiacs disease. We’ve been wondering the same thing – could gluten intolerance have anything to do with als?

  17. jim toole on May 27th, 2013 7:34 pm

    my wife was dx with als in april of 2010. she only lived 10 months longer. i was amazed at how little was known about this complex condition. i have always suspected that it was not only genetics but environment playing a major factor in the progression of als. it was not until reading dr wm davis’ work on how destructive genetically altered wheat is that i began wondering about the connection of neurological damages caused and als. i am looking forward to reading tht rest of your series and anything else i can find.

  18. Ingrid on September 5th, 2013 11:06 am

    Hi,

    my mother passed away 1, 5 yrs ago in ALS. She was both lactose intolerant and had CD.

    She was diagnosed CD late in midlife so she carried her disease for most of her life. Tried to eat “healthy” accordingly to 70-80s standards. The worst was probably wheat sprouts…

    I am lactose intolerant and am going on strict paleo-diet and read every single label for additives such as MSG and fructose such as corn syrup-stuff. I don’t dare to eat processed food or wheat any more. And frankly – it is not that difficult. Egg, fish, chicken. Good green stuff. Cook it yourself and you are in the clear.

    Ingrid ( from Sweden)

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