Gluten ataxia...?

[Wild Oats]

Hi. I think I have gluten ataxia, but I'm not sure. I have been diagnosed as having ataxia--it's in my medical records. I've also been diagnosed as having tiredness. I have also had brain MRI's which show a large white spot in my cerebellum. (You can see it in the photo. The doctors never seemed to notice it when they looked over my scans.) Also, I get fatigued during the digestive process, and the ataxia (hands closing themselves, etc.) occurs during hunger or digestion or eating. The doctors, back when I saw them, tested my blood for everything BUT gluten issues. They never told me that my ataxia could be caused by gluten issues. That was a few years ago, and I've now realized it. 

I don't feel like going back to the doctors and having more tests, especially since I'm a tad peeved that, if I'm right, they couldn't figure it out for me.  

Does anyone know the answers to these questions:

1. Is gluten ataxia a form of gluten intolerance, but not of celiac disease?
2. Can this web site be used for gluten ataxia, as well as celiac disease? 
3. Should I see the stupid doctors some more, or keep going off of gluten? (I've been gluten-free since Easter. I'm going through painful withdrawal at present.) 
4. Should I get a medical bracelet? 
5. Any other thoughts? 

Thanks!

Open Original Shared Link

[kareng]

Open Original Shared Link

 

Open Original Shared Link

[cristiana]

Hello Wild Oats and welcome to the Forum

I would imagine it would be worth pursuing a possible gluten connection with a more clued up doctor if you can.  You may wish to share with the forum what part of the States you live in (or perhaps you are in another country?) as someone might be able to put you in touch with a hospital that can help. I am sorry if you have slipped through the net, as it were, but it does happen.  My own nutritionalist was advising a client on a diet that might help someone with MS and she just happened to ask this client had she been tested for celiac disease.  Turns out the client hadn't and that was what was wrong with her all along.  She gave up gluten and recovered.  Another friend has had the celiac test and is negative but has found all sorts of neurological problems are disappearing since giving up gluten. I cannot speak for their MRIs as I don't know what they showed.

I hope you will get some more information from other posters but I would say that this forum is a good place to start.

[Wild Oats]

Thank you both! Yeah, I've been called a hypochondriac by my mother, and I've been told by some healthcare providers, "There's no reason for your fatigue, so quit imagining it," etc. I swear I don't go around complaining about or exaggerating health issues. I've been fatigued since I was around 16/17 years old, and now I'm 38. I made a mental leap recently--I was at my mom's house and got fatigued after (and during) dinner. I went to lay down after eating, and I was weak, and my brother suggested that maybe I have gluten intolerance. (He's a hard-core healthy eater and a weight-lifter.) It just seemed like a random comment, but I'd never really considered it before. And when my Internet search landed upon it as a cause (or form) or ataxia, it was eye-opening. So I have been off the gluten (to the full best of my knowledge) since Easter, and I'm disciplined enough to be worrying about trace gluten lately, rather than worrying about what I eat. Even at my mom's today, I didn't eat cake, rolls, or fish (which was coated with breading and claimed that it might have trace wheat). So essentially, I ate three huge spoonfuls of green beans and then headed straight for dessert before it was polite.  HA HA HA HA. (Vanilla ice cream by Breyers.) 

Thank you for the encouraging medical stories, because I thought for sure I had MS, but the doctors didn't think so, and now I think I might be closer to the truth!! 

[Karen Lynn]

Hi Wild Oats,

As someone who had been down the MS road and is now starting on the celiac road (slight positive on one of the old celiac tests and an endoscopy this Wednesday), I think it's important to tell you that the spot you're referring to is normal and NOT the kind of spot that occurs in MS or any other neurological disorder. I have that spot, too, and if you look at normal MRIs they have them as well. Your MRI -- just like both of my MRIs -- is normal. 

I encourage you to speak to your doctor and try to figure out what's going on. However, I also think it's important to not self-diagnose. I do the same thing, trust me, and it's not healthy. It helps no one. As a health googler, I also encourage you to either not google health-related issues or do so in a healthy manner that just educates you without leading to anxiety or a feeling like it's you versus the medical profession. 

I am not judging you -- I'd be a giant hypocrite if I were. I'm merely trying to offer advice on ways to deal with your health in a beneficial way. 

[Wild Oats]

Thank you for the advice, but I will continue to self-diagnose. 

[SLLRunner]

3 hours ago, Wild Oats said:

Thank you for the advice, but I will continue to self-diagnose. 

Wild Oats,

Karen is correct that self diagnosis is not always the best thing, and many of us have done it and continue to do it.  Good doctors (note I said good doctors ) are able to look at the entire picture of our symptoms and use their medical expertise to come up with diagnosis. However, it's easy for us to use Dr. Google and come up with a diagnosis that is more emotionally based because all we want to do is find out what is going on with us. 

If you want to truly get to the bottom of your issues, and if you believe you have celiac or gluten ataxia, you need to find a doctor that is well versed in those diseases. Your body is nothing to play around with.

[Wild Oats]

Yes it is. 

I don't know if I have a bad reaction to gluten or not. I realize that I'm taking it on faith and putting my body through hell in the meantime. However, my experiences with doctors have led me to believe that they are incompetent, unmotivated, and ignorant. The first time I ever diagnosed myself was when I was nineteen, which was slightly before Internet. My idiotic doctors couldn't tackle my upper respiratory issues after three visits. I finally went to the local library and got a medical book and found my condition: sinusitis, characterized by pain in the face when you move it. They could not diagnose a sinus infection. I realized then that doctors are worthless at diagnosing, and are only good for prescribing basic medicines: antibiotics, cholesterol pills, etc. However, doctors don't want to admit that, so they act smart and keep taking your money. 

I'll find out in a few months perhaps if the gluten thing is helping. In the meantime, why should I pay thousands of dollars for medical tests, when I can find out on my own by going off the gluten? I'm already broke. And as I pointed out, I HAVE been diagnosed as having ataxia. I don't know if it's gluten ataxia, but gluten ataxia is the only form of ataxia with a solution: quit eating gluten. I'm willing to try that. 

[SLLRunner]

I am sorry you have had some disconcerting experiences with doctors, but that does not make them all bad.  In fact, there are many good doctors out there.  I hope you figure out what is going on with you and feel better soon.

[Wild Oats]

Thank you! That's very kind. Maybe I should explain that I see the worst in everyone. I've been hurt by a million different people--not just doctors--and I have come to see that people (including doctors) are self-interested and not trustworthy. 

For example, I've observed both my little sister and my late grandmother going to the ER due to overwhelming pain. My sister had an ovarian cyst (?) or something that needed to be surgically removed. My 92-year-old grandmother had severe osteoporosis and they couldn't operate at that point to fix her back. But the point is that both were sent home from the ER without being treated. My sister had to return in agonizing pain the next day before they agreed to operate on her cyst. My grandmother had to return in agonizing pain the next day before they prescribed strong enough pain pills. I came to see that they were not willing to operate or treat the problem unless the sick person came back again. It's a patronizing way of being like, "Oh, you're still in pain? Well, I guess we'll try to fix it, since you came back and all." I don't know how it benefits them, but it does benefit them somehow to put their own priorities above people's immediate wellness, or both family members would have been treated the first time. Maybe it's the money from insurance, after two visits to ER instead of one. I don't know. But it's always something. 

I guess I didn't realize when I started this thread just how strongly I don't trust doctors. I'm overly shrewd, and I can sniff out ulterior motives from a mile away. 

[frieze]

CoQ10 deficiency is also a treatable reason for ataxia.

[Karen Lynn]

I very much understand not trusting doctors, and some are totally incompetent. Once, I went to the doctor with a 103 degree fever and measurable breathing difficulties--she told me I had seasonal allergies and to take Allegra, haha. I went somewhere else, and I had swine flu. After telling one neurologist about nystagmus I had had every morning for a month, she told me it was caused by dry eye. I've met doctors that I'm pretty sure I know more than, which is ridiculous. 

Then again, I've met caring, knowledgeable doctors who care to find an answer, trust me, and really want to help. They err on the safe side and run tests, and I feel like I'm being taken seriously. I usually hold on to these doctors, obviously, and avoid the others.

I wrote to you only because I spent about two years dealing with pretty scary neurological symptoms and had no concrete answers. Surprisingly, the anxiety that experience led to was worse than the symptoms, in part because it was frequent and unrelenting and affected my relationships with other people. Once I managed my anxiety, my life dramatically improved. 

You should absolutely find the cause of your ataxia. I would really like to know what caused multiple, at times serious, neurological symptoms in me. But that might not happen, and that's okay too. Just as you can't control your health, you can't control doctors or tests or results or answers. It's helped me a lot to relinquish control, accept what happens, do my best, and otherwise relax. None of us are in control.

[Karen Lynn]

(I tried to delete this, but I don't know how.)

[Wild Oats]

Oh, OK. I'm sorry I snapped at you. I feel guilty for flying off the handle. 

However, with me, I'm not anxious at all about my health. I'm just frustrated and agitated. And honestly, doing Yahoo searches doesn't ramp up my anxiety at all, it just ramps up my frustration with the doctors who should be doing this research for me. 

But, see, going off gluten makes me feel empowered, because I'm just fed up with doctors running tests and finding nothing. And then giving me a shifty glance like I am either a hypochondriac or I have Munchausen's. 

I'm also frustrated with the medical establishment, which has nothing to do with any doctors in particular. They take shots in the dark at what to test you for, it costs a fortune, then they test for something else, and it costs even more, then they give incorrect diagnoses, which negatively impacts your health, and then they act all infallible as though nothing they say could be a mistake because they know everything, of course. 

Monthly dry eye does sound bizarre. Even I know that dry eye doesn't follow a lunar schedule. See? If I know that, then a doctor should really know that! This frustrates me. Doctors should pay attention to what you tell them and not pull the easiest diagnosis out of their hat. 

I have extreme dry eye myself, and my parents took me to an eye doctor when I was younger. I got in to see him the next day, because the dry eye was so bad (and I didn't know it was dry eye), that my vision was blurring. The eye doctor got mad at me and yelled, "The only thing wrong with your eyes is that they're dry! Why did you bother me with this?" And it's like, first of all, I didn't know that the answer was not serious, and second, because it's your job...? My grandmother was there (actually, I now recall that she took me, not my parents), and even Granny was appalled by his outburst. 

I have had nice doctors, but they too are incompetent to diagnose. They do listen, they do take me seriously, but I resent that I pretty much have to go in there with a diagnostic possibility for them to think to test me for it. For example, if I go in and say, "Can you test me for gluten issues?" Then he probably would, but he's never thought of that on his own, thus leaving me to do all the research. 

Your comment that we're not in control is interesting. I understand (I think?) what you're saying, that we can't always be guaranteed to find the answers, that it might remain a mystery until beyond the grave, despite our best efforts at figuring it out...? I have had a lot of frustrating experiences like that, so I know what you mean. I looked in the mirror once and noticed that I was missing three inches of hair on my head. It had been chopped off clean across, like with scissors, presumably. I searched my memory, I searched my house, I searched for answers, and to this day, I have only a hazy guess as to what might have happened to my hair--a slim fragment of memory that my intuition says is relevant somehow. I have to accept that unless there's an informative afterlife, I'll seriously never know where my chopped-off hair went, or how it got chopped off in the first place. 

[ch88]

1. Is gluten ataxia a form of gluten intolerance, but not of celiac disease?
2. Can this web site be used for gluten ataxia, as well as celiac disease? 
3. Should I see the stupid doctors some more, or keep going off of gluten? (I've been gluten-free since Easter. I'm going through painful withdrawal at present.) 
4. Should I get a medical bracelet? 
5. Any other thoughts? 

 

1. 'Celiac disease' I think of as being an intestinal thing. Gluten ataxia I think is caused by the immune system attacking cells in the brain cells that send signals from one part to another. It may have other causes I am not sure.  There is such a thing as "non-celiac gluten sensitivity" and it can effect the brain. You should read this:

Open Original Shared Link

2. Yep.

3. If you are effected in any way at all by gluten do not eat any gluten. PERIOD. That means you likely have an immune response to gluten. A single exposure to gluten can damage your brain. Try googling the "gluten contamination elimination diet." You may still get a positive result on the blood test depending on how long ago you last ate gluten. 

4. Sounds like a good idea as it might be handy in certain cases if you you had trouble moving for example. 

5.  Having ataxia alone would be enough for me to stay gluten free. 

[Wild Oats]

Thank you! Just to update anyone interested, I'm still gluten-free. If I've ingested any gluten at all, then I don't know of it. The withdrawal finally quit after four weeks or so off the gluten. (It's been 4.5 weeks now.) I feel good. 

Good answers, thanks. I still have no good justification for going this course except to save thousands in medical bills with my self-diagnosis. I have read that with gluten ataxia, you have to be off the gluten for 6-12 months until the ataxia subsides. Right now, I'm just happy to be past the withdrawal. It will be interesting to see what else happens. Maybe I can get more energy and do modern dance. (Scary, right?) 

[SLLRunner]

13 hours ago, ch88 said:

1. Is gluten ataxia a form of gluten intolerance, but not of celiac disease?
2. Can this web site be used for gluten ataxia, as well as celiac disease? 
3. Should I see the stupid doctors some more, or keep going off of gluten? (I've been gluten-free since Easter. I'm going through painful withdrawal at present.) 
4. Should I get a medical bracelet? 
5. Any other thoughts? 

 

1. 'Celiac disease' I think of as being an intestinal thing. Gluten ataxia I think is caused by the immune system attacking cells in the brain cells that send signals from one part to another. It may have other causes I am not sure.  There is such a thing as "non-celiac gluten sensitivity" and it can effect the brain. You should read this:

Open Original Shared Link

2. Yep.

3. If you are effected in any way at all by gluten do not eat any gluten. PERIOD. That means you likely have an immune response to gluten. A single exposure to gluten can damage your brain. Try googling the "gluten contamination elimination diet." You may still get a positive result on the blood test depending on how long ago you last ate gluten.

As to the bold part: this is not completely true. If you you have celiac disease, then your intestines and other body systems are affected if you eat gluten.  However, if you are sensitive to gluten but don't have celiac disease, the gluten may make you feel horrible, but your body not be damaged by gluten. That is what distinguishes celiac, an autoimmune disorder, from non-celiac gluten sensitivity, which is just that- a sensitivity, or intolerance, if you will.

It's not a good idea to just stop eating gluten, but I can understand why Wild Oats chose to.

Ruling out celiac disease is always best because it causes damage to your body. If celiac is ruled out, then do what works for you regarding gluten sensitivity. In any event, if you choose to be tested for celiac do not stop eating gluten until all testing is complete. 

[ch88]

I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.