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Do Neuralogical Symptoms Go Away?

frenchiemama

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frenchiemama Collaborator
frenchiemama
Posted

This question is on behalf of my mom. I'm a recently diagnosed celiac (I had raging DH for 2 years and was only diagnosed 3 weeks ago :blink: ) and although my mom hasn't been formally diagnosed yet (she goes in next week) I'm just sure that this is what is wrong with her.

She has been sick for her whole life, getting worse and worse for at least the last 25 years. She has severe migraines, ataxia, vertigo, unexplained seizures, transient numbness in her extremities, severe stomach/intestinal symptoms, etc.

For the last 25 years she has been tested for everything under the sun (except celiac) and been told that she is crazy and needs a shrink instead of a doctor.

My question is, how much of this damage is permanent? It makes me really sad to think that she could have a normal life right now if she had been diagnosed long ago. She can't work and can't drive because of this. Is she going to get better?

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KaitiUSA Enthusiast
KaitiUSA
Posted

If she is celiac then by going on the diet should help with the symptoms. I can't guarantee anything because everyone is different but she should.

judy05 Apprentice
judy05
Posted

Frenchiemama,

I was diagnosed at the age of 62, just in time for retirement B) I was like your Mom always sick, people don't believe you and attribute it all to stress,overwork,etc. I suffered with environmental allergies, got allergy shots for 20 years, also had thyroid problems and a lot of headaches, numbness in fingers, migraines, vertigo, you name it I had it. By pure luck I started to have GI symptoms that wouldn't go away and after all those years found a GI doc who listened and began testing me. Although I tested negative for Celiac, my IGA was high,about 75. He suggested a gluten-free diet and I immediately started feeling better. Most of the neurological symptoms lessened or went away completely. When I gave up dairy I felt my head clear up, no more brain fog and even my eyes felt better. I later tested myself at York labs and found I am intolerant to corn, egg whites, cow's milk, yeast and of course wheat. I wasted a lot of years feeling sick but I'm glad to know that it wasn't all in my head. I have days when I feel sorry for myself, that's when I come on here, it helps to know that we aren't alone and others are experiencing the same problems. Tell your Mom that the diet really works, but it takes time, it has been a year and a half for me.

gf4life Enthusiast
gf4life
Posted

I've read a few articles that indicate the neurological problems associated with gluten do not always go away. They can sometimes get better, but not always.

It seems that if the symptoms have just started within a short time before being diagnosed they have a greater chance of being helped by the diet, but the longer you have had the neurological problems the less chance you have of the gluten-free diet helping to relieve those symptoms. Six months or less from onset of symptoms seems to be the common idea in the different articles I've read. Over six months and the symptoms might not go away.

My son and I both have migraines and I had some painful tingling and numbing in my extremities. The migraines we have both had for years and those have not gone away, but the tingling had started a few months before I went gluten-free for good, and that did go away.

I can't say that your mother would not benefit from the diet. If she is Celiac, she should be on the gluten-free diet, regardless of whether it makes all her health problems go away. But sometimes the damage is more permanent...especially when it is neurological.

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frenchiemama Collaborator
frenchiemama
Posted
  • Author

Thanks everyone for your replies.

I am hopeful that at least *some* of her problems will get better. I guess if nothing else her GI problems should improve and she won't get sick from every single thing she eats anymore. I guess we'll just have to wait and see.

It makes me really angry that so many of those doctors she went to didn't even seem to take her seriously at all. I know that it's not right, but I blame them for her condition. She is only 53 but she seems like a little old lady.

Guest nini
Guest nini
Posted

in my case, the seizures have gone away completely, so has the brain fog, but the tingling and numbness in my extremities is still very very present. I'm 2 years gluten-free now and I will be 36 tomorrow. I'm hopeful that the longer I am gluten-free, the better I will feel.

gf4life Enthusiast
gf4life
Posted

There is a really good article in the Winter 2004 Scott Free Newsletter titled- When Gluten Gets On Your Nerves, that basically details all the best parts of these links that I have given you (and also other articles). If you don't already get this newsletter, I highly recommend it. When you get a subscription you will have access to all the old issues online. Just click on the "Newsletter" link in the upper left hanf side of the screen here on the message board and it will give you instructions on how to get it.

God bless,

Mariann

(I am a moderator here on the message board, but I do not get anything out of promoting the newsletter. It is just a really good source of gluten free information about current medical issues regarding Celiac, food related issues and recipes, as well as adds for gluten-free products.)

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  • 1 month later...
citygirl114 Newbie
citygirl114
Posted

Brain fog is one of my worst symptoms... :blink:

I have been gluten free for about 5 mnths now and it is not improving. I work in the financial industry and find it extremely upsetting when I notice I have made errors. I have recently gone on short term disability due to the pain & fog I have been experiencing. The forgetfulness is getting out of control. Left a frying pan on the stove the other day and forgot to turn the burner off.... this is so stressful I feel as if I am losing it big time....going back to the doctors today to see if he has any suggestions..... anyone have an suggestions.....

:(

judy05 Apprentice
judy05
Posted

Have you tried going dairy or even casein free? It took me a few months to realize that dairy and sometimes soy were causing a lot of problems. I did a York test and found that I am intolerant of corn, egg whites, cow's milk, yeast, and of course wheat. Maybe you have other intolerances along with gluten. Oddly my test did not show intolerances to barley, rye and oats! I haven't tried any of them yet, but did have a bad reaction to oatmeal before I took the tests.

My biggest problem is my GI doc. He told me that I needed to go gluten-free when I first saw him and my IGA was elevated. After he tested me for the gene, was neg for celiac disease he now tells me that I can eat wheat and drink milk. He says I am using the gluten-free diet as a "placebo"! I think he is schizophrenic! He was the only one to help me, after many years of trying to find out what was wrong with me. After this I won't be needing him anymore.

citygirl114 Newbie
citygirl114
Posted

Hi Judy

I havent tried the dairy free as I hardly ever consume any dairy products. I do take calcium though...not sure what casein is?????

Saw my doc today he said the brain fog is just because I am not feeling well...I think I should put him in a canoe and send him out to sea!!!!

Guest Eloisa
Guest Eloisa
Posted

Casien is milk. Brain fog is part of being Celiac since you don't absorb what you consume well. You can remove the dairy but sometimes not even that makes the fog go away.

marycubs Rookie
marycubs
Posted

Penny -

If your doctor hasn't checked your thyroid out yet, have that tested. A friend of mine had hypothyroid (low) and the forgetfulness, brain fog was very noticeable.

Mary

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