Neurological Issues?

[Smarie418]

I am a 27 year old female who has neurological issues...I have dystonia and ataxia. I have been researching celiac disease as it does cause neurological issues. I am wondering if anyone is in the same boat as me. I started the gluten free diet today.

Another question I have is regarding coffee. I am a starbucks junkie. I was wondering if anyone knew if their soy latte is okay as far as being gluten free

[ravenwoodglass]

Count me in. My neuro symptoms were almost as troubling as the gut stuff and started loooong before tummy problems hit. I had lost my reflexes in my legs and developed ataxia in childhood. I have not fully recovered from the ataxia, but I was in my forties before I was diagnosed so had a great deal of long term damage. I have come a long way though and can walk unaided for the most part and by the time I had been gluten free for about 2 years I had regained some reflexes in my legs.

I did find sublingual B12 to be helpful in the healing process.

Have you been tested for celiac? If not you should be before you go gluten free. Even if testing is negative you should still give the diet a good try.

If you have had any MRI's of the brain and if they have found something called UBOs (unidentified bright objects) those are considered diagnostic of celiac, in some countries. Here my neuro just shrugged his shoulders and said they were meaningless. If you google UBO and celiac you should be able to find info on it. Neurological and celiac search may also be helpful.

[Ms. Celiac]

In regards to your question about Starbucks' soy latte, it IS gluten free. I get that at least 1x everyday!

Also, I find B12 injections are helpful with neurological symptoms. I take them once a month.

[happygirl]

Great information on Celiac/gluten and neurological issues: Open Original Shared Link

[Smarie418]

In regards to your question about Starbucks' soy latte, it IS gluten free. I get that at least 1x everyday!

Also, I find B12 injections are helpful with neurological symptoms. I take them once a month.

I researched the starbucks drinks and I found that all lattes are gluten free except anything with the chips.....I am a white mocha latte addict

[Smarie418]

Great information on Celiac/gluten and neurological issues: Open Original Shared Link

Thank you for the info

[Smarie418]

Count me in. My neuro symptoms were almost as troubling as the gut stuff and started loooong before tummy problems hit. I had lost my reflexes in my legs and developed ataxia in childhood. I have not fully recovered from the ataxia, but I was in my forties before I was diagnosed so had a great deal of long term damage. I have come a long way though and can walk unaided for the most part and by the time I had been gluten free for about 2 years I had regained some reflexes in my legs.

I did find sublingual B12 to be helpful in the healing process.

Have you been tested for celiac? If not you should be before you go gluten free. Even if testing is negative you should still give the diet a good try.

If you have had any MRI's of the brain and if they have found something called UBOs (unidentified bright objects) those are considered diagnostic of celiac, in some countries. Here my neuro just shrugged his shoulders and said they were meaningless. If you google UBO and celiac you should be able to find info on it. Neurological and celiac search may also be helpful.

Thanks for the info....I am actually going for an MRI the end of April because I have been getting migranes more lately.....I have had blood tests before and my gluten level came back elevated so after that I started the gluten free diet for a short time and after getting tested again it came back normal.....after that I started to go back to a regular doctor because my neurologist said it wasnt celiac and there is no way that can be the underlining diagnosis neurologically. To this day I still have a undiagnosed neurological disorder but I have the symptoms of dystotnia and ataxia.....Lately I have been researching "gluten ataxia". I feel that this could be a result of some of my symptoms so that is the reason I am gluten free now. As far as the B12 shots, can you just take vitamin b religously?

[ravenwoodglass]

Thanks for the info....I am actually going for an MRI the end of April because I have been getting migranes more lately.....I have had blood tests before and my gluten level came back elevated so after that I started the gluten free diet for a short time and after getting tested again it came back normal.....after that I started to go back to a regular doctor because my neurologist said it wasnt celiac and there is no way that can be the underlining diagnosis neurologically. To this day I still have a undiagnosed neurological disorder but I have the symptoms of dystotnia and ataxia.....Lately I have been researching "gluten ataxia". I feel that this could be a result of some of my symptoms so that is the reason I am gluten free now. As far as the B12 shots, can you just take vitamin b religously?

You can take B12 but you should use the sublingual form. It will bypass the damaged gut and go directly into your bloodstream from the mucous membranes in your mouth. I personally just went with the daily sublinguals rather than the shots. US neuro's can be really clueless, if mine hadn't been some of the permanent damage I have now would never have happened. I had my MRI a few years before I was finally diagnosed. Make sure that you get your hands on the actual report from the MRI as well as actually seeing the films on your return visit.

[Mariela]

Hi! I see I am not the only one with neurological issues. I am turning 30 and I have had these vertigo attacks since I was 20, thinking it was low blood pressure or something, because they were not too violent. Now I have been having headaches and migraines for the last 5 or 6 years also.

I just got an MRI/A done and it came up clear, but the EEG that I had last week was not. I still don't have the results but I experienced what I think it might be a seizure, but the Technician did not want to tell me and the Dr. wasn't there, he still has to review the record of the EEG. I had a 3 week headache and when it did not hurt as much, I would feel "whoozy", lethargic, I still do. I almost fainted last week, but my appt. is not until the 12th. of May and the Dr. is not in the state until then, so I am very anxious. I had twitches and I started getting them at night, before I fall asleep or when I wake up at night to get some water or something. It's freaky.

If anybody has anything like this please let me know, so we can "compare notes" or give each other support. I know I need it.

Thanks!

[sillyken]

I am glad that I am not the only one who believes that there is a connection with some strange experiences I've been having since May of 06. I wasn't diagnosed with celiac disease until 04. I have been reading that neurological damage can take place even though people have switched to a gluten free diet. I believe that due to some psychotic meds that i've taken in the past and due to the celiac disease I may have a form of dystonia or dyskinesia. I have facial tics that move across from right to left that effect my speech. I also have uncontrolable arm and shoulder movements. Since these do not read on the EEG the Dr's have passed them off as pschogenic.

Ken

Hi! I see I am not the only one with neurological issues. I am turning 30 and I have had these vertigo attacks since I was 20, thinking it was low blood pressure or something, because they were not too violent. Now I have been having headaches and migraines for the last 5 or 6 years also.

I just got an MRI/A done and it came up clear, but the EEG that I had last week was not. I still don't have the results but I experienced what I think it might be a seizure, but the Technician did not want to tell me and the Dr. wasn't there, he still has to review the record of the EEG. I had a 3 week headache and when it did not hurt as much, I would feel "whoozy", lethargic, I still do. I almost fainted last week, but my appt. is not until the 12th. of May and the Dr. is not in the state until then, so I am very anxious. I had twitches and I started getting them at night, before I fall asleep or when I wake up at night to get some water or something. It's freaky.

If anybody has anything like this please let me know, so we can "compare notes" or give each other support. I know I need it.

Thanks!

[Smarie418]

I am glad that I am not the only one who believes that there is a connection with some strange experiences I've been having since May of 06. I wasn't diagnosed with celiac disease until 04. I have been reading that neurological damage can take place even though people have switched to a gluten free diet. I believe that due to some psychotic meds that i've taken in the past and due to the celiac disease I may have a form of dystonia or dyskinesia. I have facial tics that move across from right to left that effect my speech. I also have uncontrolable arm and shoulder movements. Since these do not read on the EEG the Dr's have passed them off as pschogenic.

Ken

Yes.....Psychotropic medications especially the old skool ones such as haldol and lithium can cause physical problems such as dystonia tardive.....which cause uncontrolable movements

[labsr4me2]

I was wondering if anyone else when they eat Gluten (and for me diary as well and possibly soy), do you get neurological issues almost instantly?

When I eat (as I call it "forbidden" foods) I instantly get a "Nyquil" feeling head....I get extremely tired. My vision is correct but funny. I get weak muscles and sinus pressure.

Is this normal for celiac disease?

From what I have read, instant symptoms are not normal. I used to get this symptoms about 20mins. after I would eat carbs or sweets. Now I get them almost before the food gets to my stomach. I have since went off Gluten and Diary and it has gotten a lot better. I still get symptoms every once in a while but I think I am now having troubles with soy and iodine.

I am also getting arthitis pains and sometimes my memory is slow and my breathing gets slower as well.

Any one else get anything like this?

[whiterabbit]

Is this normal for celiac disease?

From what I have read, instant symptoms are not normal. I used to get this symptoms about 20mins. after I would eat carbs or sweets. Now I get them almost before the food gets to my stomach. I have since went off Gluten and Diary and it has gotten a lot better. I still get symptoms every once in a while but I think I am now having troubles with soy and iodine.

I am also getting arthitis pains and sometimes my memory is slow and my breathing gets slower as well.

Any one else get anything like this?

I recently suffered violent reactions to food a few weeks back and I didn't even have to ingest all the food before my body started purging itself and it seemed, any food, at the time wasn't welcome. I would immediately start to feel nauseous, then my body would get the chills and then finally I would end up at the toilet.

It all started off with a viral infection and I thought I was recovering from this when I suddenly, out of the blue, got really bad heartburn and suffered from GERD. It was a very scarry time as I felt my whole body was simply turning upside down on me and only a couple of weeks before hand, everything seemed fine. Back in Nov 2007 I had a positive blood test and it was rather over whelmingly positive. I went on to have the biopsy early Jan 2008 but the biopsy couldn't give a positive result and hence my specialist said I was a 'latent celiac' and said not to stop eating gluten at this stage but come back and see him at a later stage. Well I did go gluten free for three months just to see if I noticed any difference but the problem being, I wasn't really suffering from any so called 'normal symptons' at that stage.

I did however stuggle a little with my breathing at times but put this down to anxiety or a bit of seasonal hayfever. I had also the year previously been diagnosed with oral lichen planus (a skin rash inside the mouth along with severe canker sores which would flare up every so often). Previously to this, I had twice been sent to a Rheumatologist due to my high inflammation readings - my C Reactive was well out of the range and the inflammatory tier also and they were looking for Lupus or arthritis but twice this was a negative needle in the haystack.

What I didn't put 2 and 2 together was since Xmas time I had been experiencing diahorrea but I just thought too much fruit cake but then in March I thought, ah maybe it isn't just the fruitcake maybe its the gluten. So I had just started back going gluten free when I got horribly sick. What I think happened was my body was getting sicker and sicker with the gluten and the virus was the flood gates to let everything in.

It has been at least 8 weeks since I first contacted that viral infection and even though I am a lot better, only last week I experienced severe pain down the left and right tubes of my neck and one would think this was earache but it wasn't. It was the inflammation that would flick from one side to the other and when it started to leave that part of my body it then manifested itself along my nerves in my arms and legs. I think this again is the inflammation running along the nerves and I suspect that this is most likely inflammation from arthritis.

Even though I am a slight, and before this, a very fit person, and I show no outwardly signs of any muscle or bone degeneration, will it be as my doctors have always said - a wait and see game.

None of my symptons may be any that you have experienced but I truly believe that the gluten that I was consuming in my diet, put it this, didn't exactly help any. It is too early to say (I've only been gluten free for nearly two weeks) whether going gluten free will clear up any of these symptons but I have nothing to lose and everything to gain. Just don't be surprised if you experience of whole range of symptons. I think once gluten upsets your body, it can attack areas you may not have realised would be attack.

[labsr4me2]

Thank you.

Tomorrow I am going to go to a Dermatologist to see about getting a skin biopsy for DH.

I am a little scared because lately my memory and brain have been a little off. I feel a bit lost inside myself. Strange I know...I just blew it off as nothing but I am starting to think it might be something.

[nasalady]

I am a 27 year old female who has neurological issues...I have dystonia and ataxia. I have been researching celiac disease as it does cause neurological issues. I am wondering if anyone is in the same boat as me. I started the gluten free diet today.

Neurological symptoms are common with celiac disease and/or gluten intolerance. Some people only have the neuro symptoms, while others have both the neuro and gastric.

I have had both. I had the diarrhea/abdominal cramping/pain issues from childhood, but just recently, within the past year or so, developed ataxia, peripheral neuropathy, migraines, blurry vision, hand tremors, "brain fog", vertigo, and difficulty speaking and/or holding or manipulating objects with my hands (I call it "having the clumsies"...for example, I bite my tongue accidentally while speaking or drop things constantly).

I've been gluten free for 5 months now, and most of my neuro symptoms have diminished or disappeared. These symptoms come back when I've been glutened, usually within a few hours, while the gastric symptoms take a bit longer to show up (at least 12 hours).

I have many other autoimmune diseases besides celiac, plus I have fibromyalgia. Others on this site have said that their illnesses (including fibro) all went into remission on the gluten free diet but it can be a long process....up to a year or two to feel 100% better.

Good luck with everything!

JoAnn