Neurological Symptoms And Eosinophilic Esophagitis

[Hiawatha]

I am wondering if anyone has any input on unresolved neurological symptoms (beyond twelve months).

I tested through Enterolab in 2007 to find that I have two genes predisposing me to gluten sensitivity (DQ1, DQ3). I tried gluten-free diet for over one year, but it was not a strict diet. Six weeks ago, I have started a strict gluten/casein free diet. No improvement yet.

In 2008, I was also diagnosed with Eosinophilic Esophagitis.

My primary symptoms of concern, however, are neurological: left temple ache, left arm pain, right leg weakness, fatigue.

My concern is that I have read very recently that a gluten-free diet may not reverse neurological damage--if symptoms have continued for over twelve months. Any thoughts on this? Does it make sense to even try on the gluten-free diet?

[ravenwoodglass]

You can recover from neurological problems associated with gluten. Is the process quick? No. Do you have to be very strict? Yes. I had severe neuro issues from gluten and I did recover but it took about 6 months before I noticed a significant improvement although I did get good relief from migraines fairly quickly.

Everyone is different but for me being strict enough to heal meant avoiding all gluten sources. This included avoiding gluten in topical products and gluten distilled grains.

If you were not strict with the diet for the last year you haven't been gluten free for a year. You have been gluten free for 6 weeks. Stay strict, try taking some subligual B12 to help the nerves heal and hopefully you will get some relief soon.

[nora-n]

Hi, there are even two forums for people with neuro issues from gluten, one at neurotalk and one at braintalk. Search for gluten sensitivity.

many are DQ1 there, as DQ1 is associated with gluten and neurological issues.

[Hiawatha]

My symptoms also seem to get worse with weather changes, particularly in the spring--with snow melting. I'm guessing that allergy is involved and that melting snow exposes mold. Does this make it less likely that my symptoms are related to gluten? Or do others react to weather changes too?

[mommida]

EE is most commonly thought to have an "allergy" trigger. It can be airborn or from ingested food. There is a proven connection to seasonal allergies for some cases.

When my daughter was diagnosed with EE, allergies tests were all negative. She was put on an elimination diet beyond the gluten free diet. You start with the usual suspects, the top eight and peas. (We took the "dairy" as casein free.)

It has worked. Her last scope showed healthy tissue and no eosinophils present from the pathology report. It's not easy but the elimination diet can work wonders to control EE. You really have to keep a food journal as eosinophils are active for 12 DAYS. Trying to remember back almost 2 weeks just does not work.

There is a great lecture on Itunes, on a doctor's lecture about EE. Very informative and theories under current testing.

The damage happening in the esophagus from the eosinophils explains why you should be supplementing with sublingual vitamin B12 for nuero symptoms you describe.

[TrillumHunter]

It can improve, although it goes very slowly--think years. I was diagnosed with pernicious anemia first and started b12 injections. Those helped, but it wasn't until last year that I could say I don't have the pain/tingling sensations very often. I do get those on the couple of times I've gotten gluten. I think it would have take longer being just gluten-free unless I had been loading up on b12 for four/five years prior to being diagnosed with celiac. Sadly, I'm coming to the realization that the weakness that I have a significant amount of left-sided weakness still.

Check your b12 and stay strictly gluten-free. It's the only way to protect yourself.

[Hiawatha]

I am the original poster of this thread...

As of June 1, 2011, I have completed seven months of a strict gluten/casein free diet. I'm supplementing with a good multivitamin, along with B12 and magnesium. I've experienced fewer esophagitis symtpoms--but no improvement in neurological symtpoms. In fact, I feel that some of the neuro symptoms may be worse.

I noticed that the heat seems to have aggravated my neuro symtpoms. Does this heat aggravation point to MS? Testing five years ago showed no evidence of MS--MRIs and spinal tap. Any feedback on this would be appreciated. Do I just need more time on the diet?

[ravenwoodglass]

I am the original poster of this thread...

As of June 1, 2011, I have completed seven months of a strict gluten/casein free diet. I'm supplementing with a good multivitamin, along with B12 and magnesium. I've experienced fewer esophagitis symtpoms--but no improvement in neurological symtpoms. In fact, I feel that some of the neuro symptoms may be worse.

I noticed that the heat seems to have aggravated my neuro symtpoms. Does this heat aggravation point to MS? Testing five years ago showed no evidence of MS--MRIs and spinal tap. Any feedback on this would be appreciated. Do I just need more time on the diet?

It took a very long time for a lot of my neuro issues to go away although I could walk unaided after 6 months I still had a lot of neuro issues for a long time after that. For myself I found I was supersensitive to CC issues so did have to avoid a lot of processed stuff and we made the house gluten free to help avoid those issues to the best of our ability. I also found I was sensitive to distilled gluten so I have to avoid any distilled gluten alcohols etc that many of us are able to tolerate. For a long time I had to go with whole unprocessed foods and stayed out of restaurants as the tiniest bit of CC would cause a set back and flare my neuro issues.

If you are on any meds have you checked them with the maker? If you take any generics do be sure that they are checked at each refill.

Do talk to your doctor about the heat sensitivity issue. It is possible you may have something else going on in addition to the celiac. There are some conditions that are aggravated by heat so your doctor would be the best place to rule those out. Chances are that you are still healing as nerves take a long time to heal. It wasn't until 2 years into the diet that I had regained reflexes for example. For the weakness in your legs you may find that a physical therapist is helpful. Your GP can perhaps give you a referral to one. Hang in there and hopefully things will improve at a steadier pace for you soon.

[mommida]

My 8 year old has EE and Celiac. The heat beats her up pretty bad. You have to remember you are just an extra sensitive individual. Proper nutrition levels are just harder for your diet limitations and digestive track.

I also will have to put a theory out there too. The heat can be aggravating a possible airborn trigger.

If you are keeping a food journal you might have to add pollen count, mold count, and overall air quality to find a connection to some of your "triggers".

[Hiawatha]

My 8 year old has EE and Celiac. The heat beats her up pretty bad. You have to remember you are just an extra sensitive individual. Proper nutrition levels are just harder for your diet limitations and digestive track.

I also will have to put a theory out there too. The heat can be aggravating a possible airborn trigger.

If you are keeping a food journal you might have to add pollen count, mold count, and overall air quality to find a connection to some of your "triggers".

Your theory regarding airborn triggers is interesting. I remember when I used to get regular stomach aches from going outside--particularly during allergy seasons.

[Serafina57]

I have Gluten Ataxia from Celiac Disease. My GI doctor has worked with my neurologist and has even contacted Dr Hadjivassiliou regarding my condition. Here's what Dr Hadjivassiliou told my doctor. It can take up to 5 years for some patients with gluten ataxia to recover. Some never recover especially if they went many years before the Celia Disease diagnosis and where older (over 50).

Yes, heat triggered weakness CAN be a sign of MS. Lots of things look like MS though, so don't worry about that. It's something you need to tell your neurologist though.

If you are not seeing a neurologist, I would suggest you do so soon. Hopefully your neurologist is familiar with the neurological manifestations of celiac disease and gluten intolerance. The Lancet/neurology had an article by Dr Hadjivassiliou last spring (2011) regarding Gluten Ataxia. Doctors like to read medical articles vs patient stories.

Keep us up to date on your progress!

Jules