50 Years On Gluten Free Diet, Recent Onset Of Ataxia

[celiac son]

My 89 year old mom was diagnosed with celiac disease (then called nontropical sprue) in 1960. She has been a strict follower of the gluten free diet since then. Recently she developed lower abdominal pain and concurrent symptoms of gluten ataxia. She had decreased coordination and balance issues along with slight nystagmus. A CT scan of her head showed cerebellar changes which are consistent with gluten ataxia.

My question is this - can gluten ataxia occur in a celiac that strictly follows the gluten free diet, or could this only occur if she having some gluten contamination. She used to make her own bread and rarely ate gluten-free food she did not make herself. Store-bought gluten-free foods can contain up to 20 parts per million of gluten, so she probably is getting some gluten in her diet that she did not used to get.

I would appreciatie any feedback- thanks.

[ravenwoodglass]

It does seem she may have gluten sneaking in. Is she on any meds? If she is are they being checked for gluten? Is she living someplace where someone else is cooking for her? If so are they taking precautions against CC? The ataxia is a result of antibody action in the brain so something is causing those antibodies to be there.

[Takala]

It sounds like from the last part of your inquiry that her diet has changed by source and preparer. That combined with the symptoms of gut pain and the CT scan of the brain, seem to be pointing to gluten cross contamination as a probable cause of the ataxia.

In case you are wondering, speaking only for myself, having ataxia, and then going on a strict gluten free diet, eventually gets rid of it. I react somewhat differently than a lot of people, and ataxia or my balance being screwed up is one of my first symptoms. I also will have more trouble tracking both eyes together.

There are, however, a lot of other things that can cause balance problems in adults, especially older adults, (which doctors seem so determined to put on some sort of daily medication) so more than one thing can be happening at once.

[T.H.]

My question is this - can gluten ataxia occur in a celiac that strictly follows the gluten free diet, or could this only occur if she having some gluten contamination.

The short answer is kind of a yes/yes scenario. It can happen to a celiac who strictly follows a gluten free diet, but that's because a strictly gluten free diet pretty much includes some contamination, too. To get a completely, less than 1ppm of gluten, diet is immensely challenging.

Some things that might help:

1. Check her meds. Any new ones? Check their gluten content. If no new ones, find out if the meds she usually take have added gluten to their product now. That's something that only a rare and wonderful pharmacist will keep track of. Most of them that I've run into will smoothly hand out gluten filled pills to you, even if you had 'No gluten' on your file in bright red letters.

If the companies/pharmacist say no new gluten, you can leave it there and try some of the food stuff. However if you're really stumped, you can do some digging, finding out the name and phone numbers of the companies that make her old meds and find out what, if anything, has changed recently. New supplier for certain ingredients, new meds that DO contain gluten made on the same line or on a nearby machine? Or you could try to google, see if anyone has reacted to these meds with a gluten reaction before. A good site to check that might be helpful is www.glutenfreedrugs.com

2. Any new beauty products she's using? Any people around her who might give her a kiss when they are wearing gluten lipstick, eating gluten, etc...? Family, little kids, that sort of thing?

Now for dietary sources of CC, I had to drop a lot, and then slowly try to add back in to see what had been glutening me and my daughter. Looking over what she eats, and calling the companies to see if there have been changes lately, might work, too, if she doesn't want to do that. Here's the worst offenders, for us.

1. Grains, all of them. Corn is usually the worst CC'd (often grown as a rotation crop in wheat fields), so avoiding corn starch, etc... might help a lot. Which pretty much means almost all processed gluten-free products are out. Also, if she DOES find that corn is a problem, if she's very, very sensitive, she'll want to avoid xanthan gum, too - it's corn based.

2. Nuts, beans, and seeds. Soy is the worst offender - it's another common rotation crop with wheat. Often, nuts, beans and seeds are processed with or near wheat.

3. Meats or cheeses from the butcher or deli. These are very often cut up near gluten containing meats (like the breaded stuff they make), or even sometimes on the same machines as things with gluten. Better to get meat that is still sealed from the slaughterhouse (you can ask for it, it's just a much bigger piece) or from the frozen section where they have that.

4. Peel fruits and veggies, or wash them with gluten-free soap and water - mulch, pesticides, etc.... can contain gluten and barely CC the produce, too.

5. Might want to look at any oils she's using too - if it's from soy or corn - can be a problem. If the company processes anything that is gluten CC on the same line, that can be a problem. Olive oil is usually the best, if you can find a company that only makes that.