Re: Gluten question

[Guest guest]

, you are amazing and always have a way of making the " light come

on " for me. Mike has again been waking with a stuffy itchy nose and

today had itchy eyes. Our airconditioner has been on the fritz for a

bit here and I just assumed that was the problem (might still be) but

lately, I had string cheese worked into his meal plan and he had missed

it so badly since starting the diet that he has been eating alot of it

lately. Not sure what to attribute the itchy eyes and stuffy nose to

but I will be on the lookout for the cheese thing, and I think we will

reduce it to once a week or special occasions for now.

Thanks for the eye opener

Jenn

richard & susan hill wrote:

I think all allergies, sensitivities etc can buld over time. For

instance, never previously showed any problems with cheese until

he 'overdosed' on it when starting the diet. Gradually started seeing a

permanently blocked nose, skin rash etc, which resolved when we took the

cheese away.

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[Guest guest]

,

is gluten (and dairy, and nut!!) free at present, like you, in an attempt

to finetune away the lingering seizures. The previous post gives food for

thought, the link between gluten allergies/intolerances and seizures, is

becoming more widely written about. When I started searching about 18 mths ago,

there was not a lot out there, most papers etc only available on Medscape or

Medline.

Will answer what I can below....

Who are the people here with gluten-free children? I have some

questions for you.

1. Was your child diagnosed as gluten intolerant?

Grey area, anti gliadin test came back normal, but IgA was low. If the IgA is

low, it can sometimes give a false/negative gliadin result. 's esophinal

level was raised, usually an indication of an allergy present, (or raised in

response to a parasite infection) but this may have been from his dust allergy

which was previously diagnosed by scratch/skin testing.

Also, intolerances, as opposed to allergies, do not always show positive on

traditional allergy testing.

2. If so, how?

See above. One lady on another list tested negative on blood/skin testing,

but positive with saliva testing. She ordered an anti gliadin test kit from

Great Smokies Diagnostic Laboratory.

3. If not, why did you decide to go gluten free?

Searching for a cause 18 mths ago for worsening ataxia in conjunction with

seizures (as opposed to a not pleasant possible PME diagnosis)led me to web

sites on gluten. Trialled gluten free with , seizures lessened, but not

eliminated. In hindsight, probably reduced in response to the lower carb intake

while being gluten free. Metabolic testing (biopsies etc came back negative, and

it appears the ataxia was pretty well med (more like toxicity) related, in

conjunction with the frequent seizures back then (pre diet).

Still intermittently ataxic, but it definitely reduces temporarily following

med reductions.

started with night 'nose rubbing' sneezing etc a few months ago, looked

like an allergy of sorts, so eliminated gluten, dairy, and nuts, which helped a

lot, but a slight problem still there.

Reintroduced nuts last week, saw the runny nose and sneezing again, but my

'test' was complicated with the household all getting colds at the same time -

still don't know for sure.

4. Is it true that if you are intolerant then you must avoid it at

all costs?

Yes, I thinks so,in some celiacs, even traces of flour dust on a bread board

can be enough to set things off.

5. Are there always symptoms to this problem? In other words, if

she never had intenstinal issues, is this unlikely to be her problem?

I have read many reports of neurological complications without the 'gut'

signs, and vice versa.

6. How soon would you expect to see results from going gluten free?

We saw a lessening of seizures by about day 3 of going gluten free pre diet,

but as I said, think this was probably as a result of the low carb intake.

If 's experience with the sneezing etc last week was an allergy response

to the nuts, it happened on day 3 also. When we did the elimination of potential

allergens a few months ago though, took at least 2 weeks to see the

sneezing/itchy nose stuff improve.

7. If seizures are from gluten intolerance, are they directly or

indirectly related? In other words, gluten in the intolerant person

causes seizures. Or, perhaps gluten to the intolerant person causes

nutritional issues which then result in seizures.

Think that paper goes into this one. I always thought the main cause of

seizures from gluten was due to tiny calcifications forming in the brain, but I

don't see it mentioned in that post.

Another theory is the lack of nutrients available due to the damage in the

intestinal wall , (leaky gut type thing) causing lack of 'fuel' to the brain =

seizures.

8. If a person was gluten intolerant, would this be evident from a

very young age?

I think all allergies, sensitivities etc can buld over time. For instance,

never previously showed any problems with cheese until he 'overdosed' on

it when starting the diet. Gradually started seeing a permanently blocked nose,

skin rash etc, which resolved when we took the cheese away.

Thanks for any input that anyone has. We are finetuning for

(hopefully) total seizure control.

Best of luck, will be interested to see if it helps,