Is It Necessary To Get A Diagnosis For Suspected Gluten Ataxia?

[guitarlover727]

Let me explain some background information first.

 

I have been diagnosed as "very gluten sensitive," because a blood test for celiac disease came back as negative (I had gone gluten free about a month before the blood test without knowing that I shouldn't have done that... oops.) The symptoms I have had for my entire life (or at least since I can remember) included gastrointestinal symptoms (diarrhea, abdominal pain, bloating, etc.), constant joint pain, etc. which deteriorated to pretty severe muscle weakness as well, which is what prompted me to get tested in the first place. I was at a point where I was considering a wheelchair.. couldn't walk more than a few steps at a time.. Anyways.

 

So one of the (scariest) symptoms that I get whenever I eat gluten is all my muscles in my arms, hands, legs, and abdomen, basically are "paralyzed" in a way for 2-4 hours... I put "paralyzed" in quotes because I can still move my body, just with really great difficulty. I can't stand or hold anything, however, when this happens. I was glutened a few days ago and this happened and I tried to stand up to drink water and within seconds collapsed. Pretty scary. I woke up the next morning (after somehow crawling to bed) with little to no control of my abdomen muscles, and am just now starting to get a small percentage of muscle control and strength back. I also notice that my right eye twitches when this happens (and by the way has not stopped twitching sense being glutened a few days ago...) and this same eye has been feeling "fuzzy" as if there is cotton behind it and blurry vision.

 

After doing research it sounds like gluten ataxia rather than celiac or gluten sensitivity. My question is, would it be worth it to try to get an official diagnosis, or just keep not eating gluten?

 

I hope this post made sense. I am still kind of fuzzy headed.

[ravenwoodglass]

Gluten ataxia is celiac. Have you had an MRI of the brain? With ataxia they will find bright white spots called UBOs or unidentified bright objects. Unfortunately not all neurologists know what they are and since they are similiar in appearence to the lesions seen with MS some doctors will confuse them with those. 

With your symptoms you should not IMHO try a gluten challenge without being carefully monitored by your neurologist and should discuss throughly whether a challenge is even a wise thing to do. However without a challenge you may not be able to get a firm diagnosis of celiac. In some cases doctors will diagnose when symptoms resolve off gluten but return when gluten is reintroduced or accidentally consumed. Perhaps you could discuss that possibility with your doctors?

[BlessedMommy]

I have had severe neurological symptoms from gluten ingestion. After an ER visit during my gluten challenge, I decided to just forgo diagnosis and live as a celiac. It wasn't worth it to me.

 

I would second ravenswoodglass that I wouldn't attempt a gluten challenge without careful consultation with your doctor.

[guitarlover727]

Gluten ataxia is celiac. Have you had an MRI of the brain? With ataxia they will find bright white spots called UBOs or unidentified bright objects. Unfortunately not all neurologists know what they are and since they are similiar in appearence to the lesions seen with MS some doctors will confuse them with those. 

With your symptoms you should not IMHO try a gluten challenge without being carefully monitored by your neurologist and should discuss throughly whether a challenge is even a wise thing to do. However without a challenge you may not be able to get a firm diagnosis of celiac. In some cases doctors will diagnose when symptoms resolve off gluten but return when gluten is reintroduced or accidentally consumed. Perhaps you could discuss that possibility with your doctors?

Thanks for your response!

 

I have had an MRI before actually for the symptoms I described about a year ago, when my doctor didn't even consider any gluten intolerance- she thought it sounded like MS, but the MRI was clear. With the gluten sensitivity diagnosis, the way she worded it was "just pretend this is a celiac diagnosis and go strict gluten free for the rest of your life, because I am almost 100% sure that's what it is, but I can't say definitively because of the blood test." (she's pretty laid back... lol) 

 

I just wonder if there are severe neurological symptoms, is it even necessary to go back to the doctor and get officially diagnosed? Are these symptoms going to damage me permanently if they happen again from accidental gluten, or would it be better to just go gluten free and save the money on a doctor's visit because it's not a big deal?

[guitarlover727]

I have had severe neurological symptoms from gluten ingestion. After an ER visit during my gluten challenge, I decided to just forgo diagnosis and live as a celiac. It wasn't worth it to me.

 

I would second ravenswoodglass that I wouldn't attempt a gluten challenge without careful consultation with your doctor.

Oh man, that stinks. Sorry about the ER visit.. that sounds scary. The other night when all this happened I was considering a trip to the ER and that just seems not worth it to me to get the diagnosis. When I got the negative blood test, we talked about the possibility of a gluten challenge but my doctor said that she thought it wasn't necessary, as she was almost certain that celiac was what the diagnosis should be, unless I really wanted to do it... I was like "no thanks! I'd like to not die please." haha.

[ravenwoodglass]

You may want to ask your doctor if she is willing to give you an 'official' diagnosis if your symptoms resolve on the diet. That way if you have to be hospitalized or want to have any children tested down the road it will be easier. 

Chances are that your symptoms will resolve completely. No one can say for sure. If the vision issue doesn't resolve soon then you should see a doctor. If this happens again do head to the ER pronto just to be on the safe side. IMHO you should call an ambulance as that way you will have documentation of the effect while it is happening.  You also want to be certain that you are not having TIAs or mini strokes. 

As to healing gluten free chances are good you will be fine once you are gluten free and able to avoid CC or accidental injestion. Celiac involves so much more than just what foods we choose to eat. Check out the Newbie 101 thread at the top of the coping section. It will have lots of info to help you be safe. 

[BlessedMommy]

 I was like "no thanks! I'd like to not die please." haha.

 

LOL! Yeah, that's about what it boiled down to, for me.

[bartfull]

If it were me I would go strictly gluten-free and never look back. Definitely read the Newbie 101 thread aqs Raven mentioned, then come on back and ask lots of questions. We're here to help.   As a matter of fact, read as many threads here as you can. There is a wealth of good info on this forum - so much so that many doctors send their patients here to learn about the diet.

 

Now, on a totally unrelated topic, I too am a guitar lover, so much that I opened a guitar store 9 years ago. Been playing for 50 years and now I'm up to my neck in my obsession. So as not to clutter up your thread with unrelated posts, maybe you could send me a PM and tell me what kinds of guitars you have and what kind of music you play.

[guitarlover727]

If it were me I would go strictly gluten-free and never look back. Definitely read the Newbie 101 thread aqs Raven mentioned, then come on back and ask lots of questions. We're here to help.   As a matter of fact, read as many threads here as you can. There is a wealth of good info on this forum - so much so that many doctors send their patients here to learn about the diet.

 

Now, on a totally unrelated topic, I too am a guitar lover, so much that I opened a guitar store 9 years ago. Been playing for 50 years and now I'm up to my neck in my obsession. So as not to clutter up your thread with unrelated posts, maybe you could send me a PM and tell me what kinds of guitars you have and what kind of music you play.

You guys are awesome. I will definitely check out that thread! I am absolutely going gluten free forever, I just hope the symptoms I was having aren't too damaging or anything. My right eye is still fuzzy/blurry and now is burning and sometimes has pulsing pain (like once a day) so I decided if it hasn't gone away by the end of the weekend I'll see an eye doctor or something. Stupid gluten!

 

Also, yeah totally I'll PM you!!

[AngeliqueB]

Gluten ataxia is celiac. Have you had an MRI of the brain? With ataxia they will find bright white spots called UBOs or unidentified bright objects. Unfortunately not all neurologists know what they are and since they are similiar in appearence to the lesions seen with MS some doctors will confuse them with those. 

With your symptoms you should not IMHO try a gluten challenge without being carefully monitored by your neurologist and should discuss throughly whether a challenge is even a wise thing to do. However without a challenge you may not be able to get a firm diagnosis of celiac. In some cases doctors will diagnose when symptoms resolve off gluten but return when gluten is reintroduced or accidentally consumed. Perhaps you could discuss that possibility with your doctors?

Actually, Gluten Ataxia is NOT celiac.  Gluten Ataxia affects the cerebellum, which is why the reaction to gluten is neurological in nature and not the digestive pain, etc.(Gastrointestinal symptoms were present in only 13% of those with Gluten Ataxia), from the reaction to the presence of gluten in the small intestine, which is Celiac, also known as Celiac Sprue.  Open Original Shared Linkis a very informative abstract on the prevelance of Gluten Ataxia and the observance of potential familial occurance (genetic likelihood).  The culmulative result was this "Gluten ataxia is therefore the single most common cause of sporadic idiopathic ataxia. Antigliadin antibody testing is essential at first presentation of patients with sporadic ataxia."

 

I have Gluten Ataxia and I can say that both times I had to do a gluten challenge were absolutely horrible, and I only felt safe doing it because my family was able to make sure I was safe.  Gluten Ataxia most likely won't show on a blood test anyway, and you would likely be better off working with a neurologist who is open to the existence of Gluten Ataxia - many aren't, unfortunately.  Maintaining a very strict gluten free diet will be absolutely critical for your overall health and wellbeing, which your own experience has already shown.

[bartfull]

Angelique, Gluten ataxia IS celiac, manifested in the cerebellum, just as DH is celiac manifested in the skin. And it's great for you that you have no digestive symptoms, but there are quite a few folks with gluten ataxia who DO, just as SOME folks with DH get no digestive symptoms while others do.

[ravenwoodglass]

And some of us lucky folks get all three forms. So you itch madly and fall into walls as you are racing to the bathroom. Take my word for it not fun and so glad those days are over!