I struggled with symptoms and it took me awhile to actually find the term Gluten Ataxia. But it describes my symptoms to a T! When I have a reaction, I usually get all of the ataxia symptoms. I went to a GI doctor when I had blood work that showed positive for celiac. My regular doctor told me to immediately go on a gluten free diet and see the GI specialist. Then I went to see him and he wanted to do a biopsy and I had to go off the diet for a few weeks. The biopsy came back negative. Then they told me that the good news is I don't have celiac just IBS. I asked if I should go on the gluten free diet and they said well if it seems to help you then continue it, if not they I don't need to do it. So I went off the diet not knowing what to do, symptoms came back worse.I went to an allergist to see if there was some other food allergy. Then he told me no doubt I have celiac based on my blood work and to go back on the gluten free diet. I did and symptoms were much better but I still have one or twice a week where I get a reaction. So I went to another GI doctor that someone from the celiac support group recommended and said he knew about celiac disease. He told me that I only have gluten sensitivity and that I couldn't get neurological symptoms unless I had celiac disease, but a few minutes before that he did tell me that he only deals with the GI part and doesn't get into the neurological symptoms of celiac disease and to go to a neurologist. I told him that I had gone to one before and they didnt find anything and then he said maybe because there is nothing to find. When I went to the neurologist before I had not taken the celiac panel blood work and nothing showed on any neurological tests and was told that I must have had some tramatic experience that was mentally causing these symptoms.
Wow...so every time I have a reaction now that I am on the diet, it is usually within 30 mins of eating. Sometimes it happens before I finish the meal so I know it is gluten or dairy that is causing it. I have also done an elimination diet to where I would cut out certain foods for a few weeks then introduce them. Gluten I had a reaction (ataxia symptoms) halfway through the meal. When I did dairy, I had a reaction 15 minutes after drinking a 1/4 cup of milk. So no doubt to me those are causing these ataxia symtoms but I can't seem to get anyone to diagnose it and take it seriously. I am currently trying to get an appt at Mayo clinic in the neurological dept. Any comments would be appreciated and sorry this is so long!!
Sounds like you've had the run around quite typical of people with gluten issues !! I can't believe these GI doctor's are still so outdated that they won't diagnose Celiac without a positive biopsy when this is now the "old" gold standard of diagnosis.
The fact you are getting reactions so close to eating gluten/dairy sounds as though you are getting an IgE (allergic) reaction as well as the typical IgG one so I'd be pretty careful in case these escalate. I've found I get anaphylactic reactions to hazelnuts and allergic reactions to peanuts/sesame when my body is really upset with gluten, but this settles over time. I'm not sure how common this is but it might be something to be aware of for you too.
When looking for Neurologist, you might have more luck if you find one who specialises in ataxia but also has an interest in gluten ataxia. I think these are few and far between, but they are out there.
Yes I have got the run around big time. I can't get anyone to take what I am saying seriously. I think they just think that if they can't figure it out then it must be some emotional problem. I have had two doctors say that it is in my head or some emotional problem but they cant explain why I get the reactions right after eating. I have had the anaplylactic reactions also and i asked my allergist about it. I have had several reactions where my breathing slowed down so much that it was almost stopped and I had to concentrate to get myself breathing enough. Once my tongue swelled up and I couldnt close my mouth. But he didnt think that had anything to do with an allergic reaction. So I feel like I'm on my own most of the time. Thanks so much for your comments. Any kind of insight is helpful!!
That's such an awful experience for you.. thank you for sharing. I hope you get to see consultant who specialises in ataxia. If you contact the Ataxia UK helpline, I am sure they will be able to advise you.
Sorry to hear your stress. I finally got my diagnosis (guess) from a Mayo neurologist after being tested for everything else. He got in a big argument with their gastro docs, because the endoscopy was negative. That was in 2001, before “gluten ataxia” was in the medical journals. I ve been eating GF since then.
When I accidentally eat gluten it takes 5 to 24 hours before I feel symptoms.
My ataxia is and was constant, not sporadic.
Good luck in seeking better help.
SORRY ABOUT THE TROUBLES. BUT I RAN THE SAME TRACK WITH DRS. ONLY HAD A diagnosis for 8 months for cereb ellum ataxia.MAYO CLINIC IS GOOD IF YOU HAVE INSURANCE,BUT IF YOU DON'T,PAYMENTS IS NOT AN OPTION.
I was diagnosed with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause) and have my symptoms 24/7. Gfgirlo1, I think you're confusing "sporadic" with "episodic". No worries though...,ha! Sporadic ataxia just means they don't know the cause/reason for it. And sometimes it turns into MSA-C or MSA-P (Multiple Symptom Atrophy-Cerebellar or Multiple System Atrophy-Parkinsonlsm). Episodic Ataxia 1 and 2 (episodes) occurs sporadically. So confusing! Anyway, Fantasia, sounds as though you're allergic to gluten, as well as other things, and have an ataxic reaction when you eat it. So my uneducated guess is that you may suffer from Gluten Ataxia. I agree with others, if possible find a neurologist that specializes in Gluten Ataxia. Just my humble opinion...;o)
Thanks for all the input, that's awesome!! My Mom has been pushing me to go to Mayo and I do have insurance so I'm hoping they will have someone there to figure this out! I don't have symptoms all the time but I get them after eating. I actually had all my symptoms typed up for the doctor from my last visit so that I wouldnt forget anything but he said he didn't want to see that, he wanted me to tell him what I have. So I think he thought I just printed it from a website or something lol. I dont have my symptoms all the time and like I said, it happens within 30 mins of eating. Since going GF/DF they have gone down to once or twice a week if I get something by accident but before it was most everyday when I wasn't on the GF/DF diet. These are my symptoms and tell me what you all think: ( I actually did type these just from my own experience!)
Dizzy and lightheaded
Weakness in limbs
Tingly feeling all over especially lips and feet
Visions problems including double vision, eyes crossing, dilated, and glassy
Inability to walk if weakness is severe, shuffling feet since I can't lift them and knees feel like they will buckle under me
Fatigue
Slurred speech
Nausea
Pain in the abdomen
Muscular twitches, jerking, and vibrating/tingling feeling
Brain fog and difficulty concentrating
Seizure like gaze and not responding, if a bad reaction. Aware of surroundings and what people say but unable to respond at times.
Thanks again, I really do appreciate your comments and help so much!!!!
Yes, I have to keep a list for myself because over the last 6 years my symptoms have changed so much! At first, I was having all stomach issues like abdominal pain, nausea to the point that I couldn't finish my meals, weight loss, etc. The only thing they finally found was I tested positive for celiac disease. No ataxia symptoms until the last two years. When the ataxia symptoms started, most all the digestive problems stopped except for nausea and some abdominal pain. I have been on and off the GF/DF diet the last couple years but now I'm on it to stay since the ataxia is so bad I can't function. I'm sure all of you can relate to that! All I know is that I have been persistent and will keep trying until I able to find a doctor that will try to figure this out. Oh and my son wants to be a doctor so I told him that if he does, he better listen to his patients and go into with the mindset to help people. Also, I asked him to find a cure for what I have. ;)
I am hoping Mayo clinic will be able to help me too! Which one did you go to? I'm trying to get an appointment in Jacksonville. They are booked until March so it will be a wait. My endoscopy was negative too, But....I had been on a GF diet for a few months before that and then got off the diet for a few weeks before having it done. Plus, the GI doctor told me he did not actually go into the small intestine, only took samples from where it meets the stomach. So I'm not sure if that is typical or not? But he came in and said good news you don't have celiac. Then I was asking what do I do, do I go back on the GF diet or not? The nurse said well if it seems to help you then continue but if not don't worry about being on it. So I thought I'm not going to restrict myself if it isn't what I have! At that point, I didn't realize dairy was a big cause of my symptoms too so I can't say just being on the GF diet helped me. Then I started eating "normal" food and symptoms were still there. Then I started having the ataxia type symptoms out of nowhere.
Now that I'm on the GF/DF diet, that has been the biggest help ever! Only did my allergist this year tell me that he has no doubt that I have celiac based on my blood work that was done and to go back on the gluten free diet and then I started eliminating foods. That was a huge help also. A nutritionist told me to cut out a certain food for a few weeks, then introduce it back in your diet and see what happens. Then I got the bad reaction that I typed about above drinking part of a glass of milk. I had my allergist test me for dairy and it came back negative. Although he did say blood work for food allergies is about 50% accurate. So I don't need a positive report after that one experiment to tell me I have an allergy to milk! But I do want to eliminate any other reason as to why I am having these ataxia symptoms just in case it is caused by something else. I also want to know for my kids sake too. :)
Gfgirlo1 said:
Sorry to hear your stress. I finally got my diagnosis (guess) from a Mayo neurologist after being tested for everything else. He got in a big argument with their gastro docs, because the endoscopy was negative. That was in 2001, before "gluten ataxia" was in the medical journals. I ve been eating GF since then. When I accidentally eat gluten it takes 5 to 24 hours before I feel symptoms. My ataxia is and was constant, not sporadic. Good luck in seeking better help.
I also have Gluten Ataxia. I have Celuac Disease. I believe you are on the right track. In coming years there will be new Diagnostic criteria to diagnose celiac disease. For now keep up the good work. It took me over sux months to see significant improvement. It has been SO worth it. I couldn’t walk in 2008. Today I dud an hour on my treadmill.
I would encourage you to do not just a GF/DF diet, but whole organic foods. Nothing processed. You’ll be glad you did! Add Pro-biotics too.
Thanks for the encouragement!! I will try the organic, sometimes I want to rebel and try the GF/DF frozen dinners but at times they have given me a reaction, especially if it says it was processed in a plant with other wheat products.
Julie in Colorado said:
I also have Gluten Ataxia. I have Celuac Disease. I believe you are on the right track. In coming years there will be new Diagnostic criteria to diagnose celiac disease. For now keep up the good work. It took me over sux months to see significant improvement. It has been SO worth it. I couldn't walk in 2008. Today I dud an hour on my treadmill.
I would encourage you to do not just a GF/DF diet, but whole organic foods. Nothing processed. You'll be glad you did! Add Pro-biotics too.
Fantasia so sorry you’ve been through so much with the doctors. Me too. Over the years (11) I’ve had good ones and bad ones - more bad than good. They really don’t know a lot about Ataxia except what the symptoms are. If you get symptoms after eating this tells you a lot. Listen to your body it will be your best guide! I too early on got symptoms after eating but to this day can’t get a neurologist to take this as a clue. Later I discovered that drinking Coke with sugar would cause me so much vertigo that I couldn’t see or stand apx 15 min after drinking it. Diet coke no problem. Later I did a Gluten Free Dairy and soy free diet for a year and thought I had a real cure. Went off it and got worse but began eating some dairy again successfully and never could figure out if gluten was causing symptoms immediately or over the long term. The gluten free diet caused me to eat whole unprocessed foods and I thought that may have been what caused the improvement as much as the restrictions of gluten and dairy. The Gluten free diet cured me of 5 years of IBS as they called it. No longer a problem even off the diet. But I don’t drink straight milk. All in all I’m getting better! Recently have read a book called The Grain Brain by a credentialed neurologist who I think is way ahead of his time. I would recommend you read this. It has a huge section on gluten sensitivity and some newer tests for it. It explains why I may be getting better. It also explains why Coke and I didn’t get along. By the way This doesn’t happen any more when I drink sugar Coke which is rare. Get the best docs you can find. good luck.
Thanks I will see about getting the book. maryseas said:
Fantasia so sorry you've been through so much with the doctors. Me too. Over the years (11) I've had good ones and bad ones - more bad than good. They really don't know a lot about Ataxia except what the symptoms are. If you get symptoms after eating this tells you a lot. Listen to your body it will be your best guide! I too early on got symptoms after eating but to this day can't get a neurologist to take this as a clue. Later I discovered that drinking Coke with sugar would cause me so much vertigo that I couldn't see or stand apx 15 min after drinking it. Diet coke no problem. Later I did a Gluten Free Dairy and soy free diet for a year and thought I had a real cure. Went off it and got worse but began eating some dairy again successfully and never could figure out if gluten was causing symptoms immediately or over the long term. The gluten free diet caused me to eat whole unprocessed foods and I thought that may have been what caused the improvement as much as the restrictions of gluten and dairy. The Gluten free diet cured me of 5 years of IBS as they called it. No longer a problem even off the diet. But I don't drink straight milk. All in all I'm getting better! Recently have read a book called The Grain Brain by a credentialed neurologist who I think is way ahead of his time. I would recommend you read this. It has a huge section on gluten sensitivity and some newer tests for it. It explains why I may be getting better. It also explains why Coke and I didn't get along. By the way This doesn't happen any more when I drink sugar Coke which is rare. Get the best docs you can find. good luck.