Gluten Ataxia?

[VHDude78]

Hello everyone. I'm new here. I'm 27 years old. I've always been very active with weight lifting and hiking. My diet has always been good. I've always known I had a gluten sensitvity. I batled issues with dry scalp, irritability, fatigue, clumsiness (I seemed to run into things a lot), and always had a hard time burning belly fat. I linked in to gluten and ate in moderation. In April I began having strange symptoms. My shoulder started burning and my arm was weak/tingly. I went to my primary care and he said I strained by shoulder. He sent me to physical therapy. Therapy seemed to help. The therapist said she thought I pinched a nerve in my cervical spine. She was still unsure. The symptoms decreased a bit and they discharged me from therapy. I went back to the gym and did light weight. I would occasionally get neck, arm, and shoulder irriation..but I knew it would heal. Over time my other shoulder/arm started bothering me, too. I just ignored it and figured I would heal.

 

At the end of May I started experiencing balance issues, stiff neck, dizziness, hand/eye coordination problems, pain behind the eye, foggy head..you name it. and cramping in my legs My symptoms worsened. I went to an orthopedic doctor. He figured I may have an issue with a disc or a vert. He ordered an MRI and came back normal. He also took multiple x rays and were normal. All of my symptoms were still there. He sent me to a neuro. The neuro did a full exam and said you just have nerve irritation..but since you're getting sensations in the face I'll order an MRI to see if you have MS. I knew that was coming and thought for sure I had it. MRI was normal.

By then the cramping in my legs were getting worse. I sometimes had a hard time walking on them, They also twitched. I went back to the ortho and he sent me to therapy. I saw the same physical therapist. I'm pretty sure she thought I was crazy. Therapy helped a little...but not much. By now..I was suspecting maybe ALS as my legs felt weak.

I went to another neuro. He did his exam and didn't suspect ALS. He did his exam and said I was normal. He ordered an EMG on lower extremeties and came back normal. By now I was relieved..but confused.

Some of my symptoms started to fade a little. My neck was still stiff..I was getting dull aches in my wrists..hand eye coordination was still poor..but my legs seemed to be getting better. Desperate for answers..I went to a very well known chiropractor in town. They did xrays on my lumbar and cervical spine. They found a degenerative disc lumbar..which had 50% left..not worried about it..and there was a big gap between my c1/c2. She also told me I had some neck arthritis. That didn't make any sense as I have plenty of disc space in my neck. I've looked at all of my images that were taken the last couple of months..and arthritis wouldn't develop that fast. They found a bunch of other alignment issues that honestly do need to be addressed. So I went for it. I've been going for about a month..seen some improvement..but not as much as I would like. I feel like the Chiro is just a mask for the problem.  Last weekend my symptoms were horrible. I was consuming a lot of gluten. When I started drinking beer, I started getting a mirgraine headache. It was bad. I had a really hard time with my balance, too. That's when it hit me and I realized the gluten was making it worse. I've been on a semi gluten free diet this week. I say that because I had baked beans at a restuarant yesterday. Those are always questionable. I felt fatigued after eating them. I also had a salad with croutons but did not eat the croutons. I'm sure there was still some residue left over on the lettuce. Last night my right leg felt restless. It was strange.. like a buzzing sensation. Even now both legs feel the same, I have a slight mirgraine, My right shoulder/face/arm feels numb. I'm really beginning to think it's gluten ataxia. Anyone right off the bat would think MS or spine related. An MRI was done for MS and I don't have anything seriously wrong with my spine. Does this sound like a classic case of gluten ataxia? I don't have ANY cramping, but I do have irregularity. My stool is not soft at all either. Any advice or direction is appreciated.

[cyclinglady]

It could be gluten ataxia. Why not get tested? It would be a good place to start. Here are the blood tests and you have to keep eating gluten or the tests will be invalid. Not sure how gluten free or gluten light you may have been. That is something to research.. Typically, you need to to have been consuming 1 to 2 slices of bread daily for 8 to 12 weeks (some researchers suggest fewer weeks):

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Oh, try using the search box in this forum. There have been many posts about gluten ataxia.

Welcome to the forum and let us know how it goes!

[VHDude78]

Thanks Cycling lady. I'm almost convinced my issues are from gluten. Balance problems, stiff neck, tingling/numbing in extremities, dizziness, occasionally feel fatigued, bad brain fog, insomnia,  (Wake up really early in the AM and can't go back to sleep)..you would think..you have a spine problem or MS. Been tested for both. I've done some research and many people are experiencing similar problems. I've had gluten sensitivity issues almost my whole life..so I guess I've been poisoning myself the entire time  If anyone has fallen victim of gluten ataxia..please feel free to share your symptoms and stories.

[VHDude78]

HI Everyone. I've been completely gluten free (no questionable items) for three days now. I woke up this morning and my heart was racing and had a head rush. I almost called 911. It's calming down now. Although, I had a few handfuls of peanuts last night. Maybe the niacin did it? Is this a typical symptom of gluten withdrawl?

[cyclinglady]

You should really get tested for celiac disease before going gluten free! Why? Because it is a lifelong commitment. People often find it difficult to maintain the gluten-free diet if they doubt their self-diagnosis. This works for some when all else fails. I do understand the long and frustrating road to getting a diagnosis! Then finally, if you do have gluten ataxia or Celiac disease, it takes months to years -- yes, years, to recover. Perhaps even longer when the brain and nerves are involved. Symptoms do resolve quickly because this is an autoimmune disorder. Get the celiac antibodies test and stop guessing.

Sorry to sound harsh, but when you are sick and dealing with brain fog it is hard to absorb information. Perhaps share this information with your parents or a friend to help you.

Best wishes!

[VHDude78]

Hi cycling lady,

My chiro is testing me for gluten sensitivity. He is checking for dozens of different food allergies as well.

I informed him that I thought I could have Celiac and that was the root cause of my problems. He said, "You could be right..your urine sample shows you're extremely dehydrated. Do you pee a lot?" I said, "Yeah..and i drink tons of water." He smiled and shook his head. He said celiacs and people sensitive to gluten typically are dehydrated easily and do urinate often. I didn't really get to ask him why. Does anyone know why? Is it because gluten affects your blood sugar?

[cyclinglady]

Sounds like bull......this guy is into alignments. Good to go for a hurt shoulder, but not for a celiac diagnosis. Have a medical doctor order the blood tests. There is no credible test for gluten sensitivity. And an allergist (MD) is your best bet for testing for allergies.

A medical doctor can check your blood sugar too. But....if the chiro can order the tests I listed earlier -- then go for it.

[knitty kitty]

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Hope this helps. I know how you feel.