Gluten Ataxia

[Amber M]

Well, I just got my gene test back. I have DQ 1 and DQ 2 with subtypes, 7and 6. It explained that I got the genes from both parents and my children would have one of the genes for sure. (my daughter has 3 auto immune diseases and she does not want to face the possibility of it being from gluten. I am working on her. But anyway, It explains that I do not appear (by the stool test) to have full blown Celiacs but have higher chance of gluten intolerance due to having two genes. Also that I have a higher risk with 1 and 3 of having Gluten Ataxia and Colitis or other lower bowel problems.

So I look up Gluten Ataxia. It totally explains all of my neurological symptoms (numb, tingling, muscle twitching, cramping, vertigo, off balance gait, feeling like I am going to fall over at any time, all of my 20 years of cronic inner ear problems (many ear tubes) And all of my lower intestinal problems!!!!!!! Holy Bananas, I finally know what is wrong. I hadn't come across the words "Gluten Ataxia" until now and people with Gluten Intolorance and not full blown Celiacs can have this really bad.

I had the blood test and the biopsy after going gluten free and came back negative on Celiacs. I now firmly believe that the Gene test is the best way to go. I could have continued to eat gluten thinking I did not have a problem otherwise. My one biopsy came back negiative, but had I continued to eat gluten, the information says I could have come down with the full blown disease. But I think it is just as important to know if you are intolorent because Ataxia affects the cerebral area of the base of the brain and can actually cause autoimmune diseases as well, like schzophernia and MS. (My mother, by the way has schzophernia!!!!!!

Any one else fimilar with all this??? It is blowing my mind. I am overwhelmed.

I see now, I put the wrong results above, The actual test results are below, with my signature.

[Amber M]

Well, I just got my gene test back. I have DQ 1 and DQ 2 with subtypes, 7and 6. It explained that I got the genes from both parents and my children would have one of the genes for sure. (my daughter has 3 auto immune diseases and she does not want to face the possibility of it being from gluten. I am working on her. But anyway, It explains that I do not appear (by the stool test) to have full blown Celiacs but have higher chance of gluten intolerance due to having two genes. Also that I have a higher risk with 1 and 3 of having Gluten Ataxia and Colitis or other lower bowel problems.

So I look up Gluten Ataxia. It totally explains all of my neurological symptoms (numb, tingling, muscle twitching, cramping, vertigo, off balance gait, feeling like I am going to fall over at any time, all of my 20 years of cronic inner ear problems (many ear tubes) And all of my lower intestinal problems!!!!!!! Holy Bananas, I finally know what is wrong. I hadn't come across the words "Gluten Ataxia" until now and people with Gluten Intolorance and not full blown Celiacs can have this really bad.

I had the blood test and the biopsy after going gluten free and came back negative on Celiacs. I now firmly believe that the Gene test is the best way to go. I could have continued to eat gluten thinking I did not have a problem otherwise. My one biopsy came back negiative, but had I continued to eat gluten, the information says I could have come down with the full blown disease. But I think it is just as important to know if you are intolorent because Ataxia affects the cerebral area of the base of the brain and can actually cause autoimmune diseases as well, like schzophernia and MS. (My mother, by the way has schzophernia!!!!!!

Any one else fimilar with all this??? It is blowing my mind. I am overwhelmed.

Sorry, My spelling used to be so good, but my brain is not working lately. I thing I spelled schzophrenia wrong (twice) Bear with me.

[caek-is-a-lie]

There are some people who believe that gluten intolerance/Celiac can also cause Narcolepsy. Narcolepsy involves degeneration of neurons in the hypothalamus and several labs have been working on proving it's an autoimmune disorder. I don't know of any work off-hand that looks at Narcolepsy as a result of another autoimmune disorder, but I wouldn't rule it out. The "Narcolepsy gene" is another HLA type, similar to those for celiac disease, so I don't think it would be far-fetched to suggest that celiac disease patients could also develop Narcolepsy as a result of the celiac disease HLA's instead of the Narcolepsy HLA.

[Amber M]

There are some people who believe that gluten intolerance/Celiac can also cause Narcolepsy. Narcolepsy involves degeneration of neurons in the hypothalamus and several labs have been working on proving it's an autoimmune disorder. I don't know of any work off-hand that looks at Narcolepsy as a result of another autoimmune disorder, but I wouldn't rule it out. The "Narcolepsy gene" is another HLA type, similar to those for celiac disease, so I don't think it would be far-fetched to suggest that celiac disease patients could also develop Narcolepsy as a result of the celiac disease HLA's instead of the Narcolepsy HLA.

Okay, Now you are really blowing my mind!!! I have had "sleepers paralyisis" (which is considered in the same family fo Narcolepsy) for years, since my early 20's! I develped migraines shortly after. I have been on beta blockers for years for all of it!!!!!!OMG My neurologist at the time thought I may have had seziers, but then he didn't think so. I was diagnosed with "classic migraine" with "sleepers paralyisis."

I could get well enough to get off my meds?????I hope, I hope, I hope! I just love this site, it has helped me so much. Thanks

[oceangirl]

Amber,

Glad you are getting some help at last. Perhaps many of your issues will resolve without the evil gluten.

And a big "hello" from a fellow Mainer.

lisa

[Mother of Jibril]

I now firmly believe that the Gene test is the best way to go. I could have continued to eat gluten thinking I did not have a problem otherwise. My one biopsy came back negiative, but had I continued to eat gluten, the information says I could have come down with the full blown disease. But I think it is just as important to know if you are intolorent because Ataxia affects the cerebral area of the base of the brain and can actually cause autoimmune diseases as well, like schzophernia and MS.

I agree... knowing that you have gluten intolerance is just as important. Even if you don't have celiac (an autoimmune disorder that damages your intestines) there are dozens of other disorders that have been linked to gluten intolerance. The DQ7 gene, for example, puts you at risk for gluten intolerance, casein intolerance, thyroid disorders, grass and pollen allergies, lupus, rheumatoid arthritis, gingivitis, fungal sinusitis, and thrombocytopenia (a clotting disorder).

A thyroid disorder is one of the most common autoimmune problems, especially in women. A lot of doctors think it's no big deal... just take hormone replacement and you're all better. BUT... if you're undiagnosed or you don't get enough, you get all kinds of horrible symptoms. Grave's disease comes with anxiety, insomnia, sweating, heart palpitations and bone loss. Hashimoto's can cause depression, fatigue, hair loss, joint pain, infertility, miscarriage, constipation, terribly dry skin, etc... It might not kill you, but the effects will definitely diminish your quality of life. I know from personal experience.

If you feel better being off gluten then you should definitely stay off it. Hopefully most (if not all) of your problems will get better

[caek-is-a-lie]

I could get well enough to get off my meds?????I hope, I hope, I hope! I just love this site, it has helped me so much. Thanks

Well, keep in mind, that is only a theory that a few people hold. However these are all people that have made their Narcolepsy symptoms much better since going gluten free. You will have to see how going gluten free works for you. I have several foods I avoid to remain med-free for my Narcolepsy, however this is not a conventional treatment and it may not work for everyone. I certainly hope that a gluten-free diet can alleviate your other symptoms. It's so nice when something simple can improve your quality of life!

[April in KC]

Hi Amber - I had decades of other issues before I developed outright Celiac Disease in my mid-30s and had a rapid unintentional weight loss. I think you're right that the other gluten sensitivity issues can precede the development of Celiac Disease or occur without it.

I have sleep paralysis personally and in my family as well. Also RLS and automatic behavior when sleepy - another narc. symptom. My restless legs (twitches, jerking after falling asleep, etc.) pretty much went away when I went gluten free. Also my balance issues - I had been running into doorways and walls, especially at night. I just thought I was clumsy, but suddenly it dawned on me that it was much worse than it had ever been. This was just prior to my diagnosis. After nearly two years, I have fewer bruises, lol.

I would sometimes get spinning sensations or feelings of movement. The act of backing my car into my garage (which my DH prefered, otherwise I wouldn't do it...) would make me feel incredibly dizzy, for some reason. Not anymore - unless I have been glutened. When I am glutened, I also have trouble getting my words to form clearly - they seem to get jumbled up in my mouth.

Some of the positive changes occurred very quickly - others took time.

Be patient, and maintain a very pure diet while you are trying to figure out whether gluten is your culprit. Most of us have discovered that there's no such thing as "gluten lite" or "mostly gluten free."

Best - April

[Amber M]

I agree... knowing that you have gluten intolerance is just as important. Even if you don't have celiac (an autoimmune disorder that damages your intestines) there are dozens of other disorders that have been linked to gluten intolerance. The DQ7 gene, for example, puts you at risk for gluten intolerance, casein intolerance, thyroid disorders, grass and pollen allergies, lupus, rheumatoid arthritis, gingivitis, fungal sinusitis, and thrombocytopenia (a clotting disorder).

A thyroid disorder is one of the most common autoimmune problems, especially in women. A lot of doctors think it's no big deal... just take hormone replacement and you're all better. BUT... if you're undiagnosed or you don't get enough, you get all kinds of horrible symptoms. Grave's disease comes with anxiety, insomnia, sweating, heart palpitations and bone loss. Hashimoto's can cause depression, fatigue, hair loss, joint pain, infertility, miscarriage, constipation, terribly dry skin, etc... It might not kill you, but the effects will definitely diminish your quality of life. I know from personal experience.

If you feel better being off gluten then you should definitely stay off it. Hopefully most (if not all) of your problems will get better

Here my results:

HLA-DQB1 Allele 1 0301

HLA-DQB1 Allele 2 0603

Serologic equivalent HLA-DQ 1,3 (subtype 7,6)

It says I have genes from both parents and my children will have at least one. I am gluten intolorant and have "gluten ataxia" and lower colon problems (don't know exactly what yet)

My daughter had Graves disease for years until she also developed growths on the thyroid and had to have it completely out. She has arthrtis and spondilosis (can't remember type right now). She does not want to face the "gluten" possibility right now. I'm working on it. She was soooo sick 2 years ago, she and her daughter had to move back home so I could take care of them. Now, listen to this, Her tyroid (basic) test came back normal for over 3 years until she finally saw a specialist out of town at an endro. center. They estimated she had had graves for well over 7 years! It was the FULL Thyroid panel that finally picked it up. (I will be having that in Dec.) My mother has thyroid problems along with schzophrenia. My BASIC thyroid test always shows normal. I am fully aware of all of those symptoms because of what I went throught with her. She was physically and mentally ill for a long time. Now she is much better, but sick with other symptoms and always exsausted at 34 years old. But, she does not have bowel problems. I read that with the gluten intolorance, you don't always have the bowel stuff.

My "Cows" milk test came back 8 units, 10 being normal. I think I am okay with the milk. And, I do not have malabsorption.

I know myself from the "challenge diet" my allergist had me do several months ago what happened. I am severly sensitive to gluten. I get cancer sores, or something to that affect within 10 minutes of eating gluten. I started saying I could be a gluten detector. Then all of the neuro. symptoms start getting worse within hours. I get sick to my stomach and within hours, my bowels change.

I have totally gotten rid of the Gerd and my neuro symptoms are geting a little better day by day. The "haze" is lifting, my energy is increasing. My ear doc says my ear problems have never looked better. (after 20 years of chronic problems and tubes.)

Well, I could write on and on as we all know. This subject is endless it seems! I think I might seek out a support group to go to.

One thing, it has been a series on the local news all week here. It is about time!! We have a few local bakerys and a pizza place hopping on the gluten free wagon. Things are looking up!

I would like to end with a question. I don't fully understand my results, can you tell me more? I noticed you have "gluten sensitivity" by the HLA 1 -0301 one yours, is that where that shows? And does the subtype 7,6 mean that too?

[Mother of Jibril]

Oh yeah... I was confused by this for a while too.

The "serotypes" (1, 2, 3, 4) are broad categories that the "subtypes" fall under. For example... DQ7 and DQ8 are both "3s" meaning that they share some of the same amino chains and therefore some of the symptoms. It's better to have genes from two different categories; overlap makes you higher risk and can cause your symptoms to be more severe.

Serotype 1 includes the subtypes DQ5 and DQ6

Serotype 2 includes all the variations of DQ2

Serotype 3 includes the subtypes DQ7, DQ8, and DQ9

Serotype 4 includes all the variations of DQ4

Serotypes 1, 2, and 3 are all gluten-sensitive. Serotype 4 is not.

When people talk about being DQ6 or DQ7 they're referring to the subtypes.

[Amber M]

Amber,

Glad you are getting some help at last. Perhaps many of your issues will resolve without the evil gluten.

And a big "hello" from a fellow Mainer.

lisa

Hi Lisa! I live outside of Bangor, in Milford. Nice to meet you

[Amber M]

Oh yeah... I was confused by this for a while too.

The "serotypes" (1, 2, 3, 4) are broad categories that the "subtypes" fall under. For example... DQ7 and DQ8 are both "3s" meaning that they share some of the same amino chains and therefore some of the symptoms. It's better to have genes from two different categories; overlap makes you higher risk and can cause your symptoms to be more severe.

Serotype 1 includes the subtypes DQ5 and DQ6

Serotype 2 includes all the variations of DQ2

Serotype 3 includes the subtypes DQ7, DQ8, and DQ9

Serotype 4 includes all the variations of DQ4

Serotypes 1, 2, and 3 are all gluten-sensitive. Serotype 4 is not.

When people talk about being DQ6 or DQ7 they're referring to the subtypes.

Me thinks me gets it! At least much better. Thank You.

[oceangirl]

Hi back, Amber- I'm from southern Maine but I lived in Bangor while attending UMO many moons ago. I am double DQ 1, sub-types 5 and 6- can't help with your type but it looks like folks are helping!

lisa