Gluten Ataxia

[jldurrani]

Hi Guys, I am new on this blog; this is my first post. I am an anesthesiologist. My son has ataxia ( impaired wobbly gait) with poor core strength, inability to stand still without support and abnormal arms movement; he is seven years old now and these movements started since he was four years old. He has seen pediatric neurologists multiple times; he had an MRI of the brain done and it was normal. They think he might have ataxia telangiectasia. Recently he had lab work done for gluten sensitivity and it surprisingly it came back strongly positive (Tissue transglutaminase antibody IgA 137 (Normal 0-9) Endomysial andtibody titer 1:160 (Normal less than 1:10). This came as a shock since he never had any GI symptoms. I looked up online and there is an association of gluten sensitivity with neurological symptoms. He has been gluten free for the last three weeks but his symptoms have not improved. What I read online said that it typically takes 3-6 months before any improvement is noticed.
I just wanted to ask if anybody else on this forum had experienced any neurological symptoms with celiac disease and if their symptoms improved with gluten free lifestyle. Thanks.

 

[BlessedMommy]

I'm sorry for the stress that has put you through! 

 

Personally I had neurological symptoms in the form of stroke like symptoms after a series of severe headaches. I went gluten-free and I have never had any recurrence of TIA's.

 

Hopefully someone who has symptoms closer to what your child does, can chime in!

[GFinDC]

Hi jldurrani,

 

Welcome to the forum!

 

There are several forum members who have had symptoms similar to your son's.  There are some threads discussing UBO's (unidentified bright objects) on MRI's on the forum.

 

Brain calcifications in celiac disease

Open Original Shared Link

 

Dr. Hadjivassiliou does research on gluten ataxia.  He's found his patients can show no GI symptoms but can still have severe ataxia.

Nuerological symptoms without gastro symptoms
Open Original Shared Link

Dietary treatment of gluten ataxia
Open Original Shared Link

 

Ubo's, Epilepsy And Celiac
https://www.celiac.com/forums/topic/20198-ubos-epilepsy-and-celiac/?hl=%2Bunidentified+%2Bbright+%2Bobject

 

The usual thinking is that nuero issues are slow to resolve, sometimes taking up to 18 months to recover.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[greenbeanie]

My daughter had neurological symptoms almost since she was born, and was diagnosed with celiac at age 4. She did have GI symptoms and bad rashes too, but the neurological stuff was by far our most significant concern. As an infant who was exclusively breastfed (when I was eating some gluten). The neurological stuff progressed in this order, as far as I can remember: extremely easy startling and noise sensitivity, twitching in her sleep, tightly clenched fists way past the time when she should have been opening her hands, delayed fine motor skills as a result, delayed loss of infant reflexes, some delays in gross motor skills (didn't walk until the later end of normal - around 14 months), poor coordination and lots of bumping into things in general, increasing sensory issues of all sorts that were eventually diagnosed as Sensory Integration Disorder, and lots of motion sickness. She did see a pediatric GI and neurologist as an infant, but she'd only had breastmilk at that point and they doctors did not even consider celiac as an explanation for these symptoms. They thought she had CP for the first year, but her overall tests and symptoms weren't really consistent with that. She had early intervention for the fine motor delays as an infant, and PT for the sensory integration issues as a toddler, but none of it really helped. She was also extremely fussy since birth, and nothing we did would ever calm her down. Before her diagnosis, it was like four years of constant colic. 

 

At age 4 she tested positive on all three celiac tests they ran, and had a positive biopsy. Once we started a gluten-free diet, her daily stomachaches and general fussiness improved right away, but really noticeable improvements in the neurological symptoms took a few months. She hasn't seen a neurologist since the celiac diagnosis, but my sense is that she's squarely in the normal range for just about everything now, after about 10 months gluten free. She is sensitive to very small amounts of gluten and definitely cannot tolerate anything made on shared equipment (even if it's below 20ppm). 

 

It may take a while to notice improvements in your son's neurological problems, even if they are solely caused by gluten. We are still not entirely sure whether my daughter has other (minor) health issues going on as well or whether everything was caused entirely by celiac, but she's still showing steady improvements even now. The biggest differences came in the 3-5 month range, though. Her tTG-IgA was over 16x normal at diagnosis and is down to less than 2x normal now, so we'll probably still see continued improvements with the neurological stuff at least until her antibody level normalizes. 

 

For what it's worth, my own celiac tests were negative, but I had decades of symptoms that have mostly gone away on a gluten-free diet too. I was hospitalized with ataxia at one point, and baffled two neurologists (who thought I might have some sort of heavy metal poisoning but never considered a gluten problem). That particular episode was triggered by an insomnia medication, but my coordination problems had been worsening for years before I ever took the medication, so there was clearly an underlying issue. I used to walk into door frames and open cupboards into my head on a daily basis. The good news is that my coordination is still improving on a gluten-free diet too, even though I don't have a clear diagnosis. It's also taken my balance problems a lot longer to improve than my GI symptoms, though.

 

Good luck, and I hope your son feels better soon!

[jldurrani]

Thanks a lot BlessedMommy, GFinDC and greenbeanie for your comments and kind words. It is very helpful to know that we are not the only ones who have ever faced this situation. After the pediatric neurologist completely blew off the possibility of gluten being responsible for these symptoms, we were very frustrated; she was adamant that there is some brain defect that is causing it and that we may find the cause or we may not find the cause! I am hoping that the Ataxia Telangiectasia work up turns up negative. 

My son is still struggling with the idea why he cannot have gluten and why all other kids can have gluten. We have started giving him gluten free lunch every day to take with him to school. At school cafeteria he takes only fruits and vegetables. His teacher knows about his gluten allergy and keeps an eye on him. The hardest part is eating outside. Here in Louisville, KY there are some restaurants that have gluten-free menu but the options are limited. 

I have a question; if something does not say gluten-free on the label but in the contents it does not have wheat (or rye or barley) should it still be avoided because of the risk of cross contamination? Like most ice creams do not say gluten-free on the label but searching online, some blogs mentioned that they are safe if they do not have any added materials like cookies etc. Same way, eating sushi in a restaurant (without Tempura batter) with gluten-free soy sauce OK------------since it is being prepared in close proximity to the fried tempura products?

 

Thanks a lot for your time and your comments. It is very helpful!

[3bears2]

Please avoid sugar, dairy, food dyes until he is better. Please read a book like Celiac for Dummies so you understand about cross contamination. It took me 2 years to get better. These things make my son react. Chocolate can be bad too. I hope he is better soon. We do a lot of Jamba Juice they have dairy free options for treats.

[GFinDC]

Hi JLDurrani,

 

Take a look at the tips for the first 6 months above.  Dairy is not workable for many people at the beginning of the gluten-free diet.  Really it is best to avoid eating out at all at the beginning.  Instead concentrate on whole foods cooked at home.  Avoid all processed foods if possible.  Processed foods usually have preservatives, food colorings, emulsifiers, and other non-food ingredients that are not great for your body.  They aren't actually food at all, but additives to foods.  The FDA rule for gluten free labeling is not in effect yet.  So to check the status of gluten-free foods you can try the manufacturers website or do a search on this forum.  One of the advantages of eating whole foods instead of processed foods is you don't have to worry about the ingredients.  A carrot is a carrot, no other ingredients there to consider.  Just rinse them in water and you are all set to go.  Generally meats are the same way, although sometimes they put a glaze on hams etc that could be a problem.  But that should be labeled too.  Sometimes a glaze is in a separate package and that's not a problem.

 

A very simple whole foods diet is the best way to go for improvement.  It takes time to learn all the ins and outs of eating gluten-free.   Taking the cleanest diet approach at the beginning can avoid newbie mistakes and also save time reading labels in the grocery store.  Some people have reactions to the dough enhancers they add to gluten-free baked goods so it's better not to eat lots of those.

 

Hopefully the problem is just gluten, as it can be avoided.  Some celiacs have reactions to oats just like they do wheat, rye, and barley.

 

There is a genetic test for celiac disease.  About 30% of the population has one of the genes for celiac disease.  But only 1% get it.  The chance of having celiac without the genes is low, but not impossible.

[LDJofDenver]

Ataxia as adult celiac.  Greetings.  I had pretty significant "gluten ataxia" (from what I understand the antibodies that attack the small intestine also attack specific type of cells in the cerebellum - I'm not a medical person, I'm sure you can google this and get some info).   I was not diagnosed with Celiac Disease until in my 50s.  Among other problems, my ataxia indeed affected my balance and gait -- my Dr. suspected MS (terrifying!) and I was sent for an MRI. Thankfully that was negative and MS ruled out, but I relay that to illustrate how significant the symptoms were.  Shortly thereafter I was diagnosed as Celiac, and I would say the 3-6 month mark is pretty much where my improvement happened. I remember reading at the time that "neuro" problems take longer to resolve, once you are on a gluten free diet. I am thrilled to say that ALL of my neuro problems were completely gone in 6 months.  I hope this is the case with your son. I have had no relapse, except if I get significantly "glutened" I'll be wobbly and/or dizzy next day or two thereafter.  Best wishes for your son's recovery.