I think I read somewhere that there may be elevated IgG ?

Which is what I had before going gluten free, 40.

My Mother passed away last June at 94 years old. She had idiopathic ataxia. She had one DQ1 and one DQ3 gene.

A blood test a year before did not show elevated IgA or IgG.

[We also wondered about the possibility of Normal Pressure Hydrocephalis.]

Could neurological damage be happening to a person even if there are not elevated levels?

Thanks, Bea in OH

two DQ1 genes, POTS, a form of dysautonomia
also elevated tryptase, a possible mast cell disorder

I personally think it is more likely to have ongoing damage with no positive blood work when DQ1 (then DQ2 and 8) although I have seen no research on it.

I am a double DQ1 with complete reversal of moderate asthma, reflux, heart irregularities, borderline glucose levels, hypoglycemia, and the digestive symptoms after stopping gluten and dairy. There can be no doubt of the connection for me and my doctor even though I was negative on blood work and even on Enterolab tests.

My sister has the neuro symptoms but won't be tested. Her case would have been even more interesting for you.
Good luck,
Leslie

I'm certainly interested in hearing what is out there about double DQ1, since that is what I have.

My only symptoms are intolerance to everything Enterolab tests for. I'm glad they don't test for more

I've tried to research this, but I end up with hits with people saying that DQ1 might create this or that problem, but no actual studies. Perhaps someone here is a better medical researcher than I

Bea, as a point of clarification, when you say elevated IgA and IgG, do you mean antigliadin IgA/IgG, or total IgA/IgG? It can be confusing, but I'm thinking you are referring to antigliadin antibodies...associated with gluten sensitivity.

About the only thing I've seen written in regard to HLA DQ1 and antigliadin antibodies is that Dr. Hadjivassiliou has found positive antigliadin antibodies in about 40% of his neurological patients, and HLA DQ1 in about 20% of his gluten sensitive neurological patients.

I keep waiting for something more on this and I do keep my eyes out for new publications....wishing someone would do some sort of exclusive study on HLA DQ1 and gluten sensitivity. My older daughter and I both have double copies of HLA DQ1. My two daughters both had only an isolated positive antigliadin IgG. Total IgA was only tested for my older daughter, and it was was below range. If total IgA or total IgG are below range, other IgA/IgG tests are not reliable (like antigliadin IgA or IgG tests). My antigliadin and anti-endomysial antibodies were negative. I have no idea about my total IgA.

I also read that HLA DQ1 is associated with narcolepsy. I even talked to one person who had narcolepsy that disappeared with a gluten free diet! That is the only other thing I've seen.

Bea, generally positive antigliadin antibodies IgG are dismissed by doctors as being non-specific. However, Dr. Hadjivassiliou, the authority on gluten sensitivity and neurological disease, tells us sometimes the antigliadin IgG antibodies are the only indicator of gluten sensitivity in patients who do not have biopsy proven celiac disease.

This article probably discusses it best:
Gluten sensitivity as a neurological illness, M Hadjivassiliou, et al.

But here are more of his articles: Dr. Marios Hadjivassiliou

Here is an excerpt where he explains why antigliadin IgG antibodies should not be ignored:


But... to answer your question... several studies say that up to 20% of biopsy proven celiacs have negative blood work. To me that says it is absolutely possible that those with gluten sensitivity and the non-celiac genes of HLA DQ1 might also have negative blood work. It is hard to identify those people, though, because the blood tests are negative and only rarely do people with DQ1 show biopsy evidence of celiac disease (only 1% of the 1% who have biopsy proven celiac disease have HLA DQ1). So... in the event of a negative biopsy and negative blood antibody tests... it requires a dietary trial on a leap of faith.. and listening to your body's response to the diet.

Another option is the stool testing by Enterolab that shows positive before blood antibody testing, but is not alternative testing.

Cara

I guess this might not be completely accurate since I have had MdDS (mal de debarquement syndrome). Nobody knows if that is neurological, an inner ear problem, or what. I managed to find a way to eliminate the symptoms, no help from my doctor. I had to research and find out what I had, then show him -- he read and agreed. But he told me not to take the herb I thought might help; I did anyway and found immediate relief. Not that regular medicine has any treatment ... I was first prescribed something that doesn't work for anyone, then offered tranquilizers.

I've had the symptoms a few more times, taken the herb, and gotten over them. Now I take the pills when I travel and don't suffer at all. Knock on wood -- I'm going on a river cruise this summer. I haven't been brave enough to try an ocean cruise again after what happened the last time.

I sometimes get real cold, especially in my hands and feet. Testing has not found a cause.

Quote:

mal de debarquement syndrome

What are the symptoms of this?

I've had symptoms of 'possible Meniere's'... (vertigo, tinnitus, pain and pressure in my ears) that turned out to be related to my B12 deficiency.

How is your thyroid function? Cold hands and feet can come with hypothyroidism.

Cara

Here is one good explanation:

"Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.

After alighting or "debarking" (debarquement) the traveller continues to feel "all at sea", unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.

The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)


"Like trying to constantly walk on a mattress or trampoline"


is a good description of the main symptom, which is usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion, for example driving."
http://www.mdds.org.uk/

More explanation of the symptoms: http://www.mdds.org.uk/symptoms.phtml

For me, I got off a short ocean cruise and still felt like I was on a rocking boat. My husband, who used to be in the navy, said I needed to get my "land legs" back. But the rocking continued. The only time it didn't bother me was in the car. Being under fluorescent lights made things worse -- I hesitated to go grocery shopping because I felt I was lurching around like I was drunk.

There is no test for this. It is diagnosed by the symptoms and by process of elimination. I read lots of folks who went through full sets of neurological and psychiatric testing before finally finding out what was wrong.

People's experiences vary. Sometimes the symptoms go away in a few days. Sometimes it takes weeks or months or the symptoms don't ever go away. Someone who's had the symptoms may be more prone to having them in the future. I've had some symptoms again following particularly long and/or bumpy plane rides.

But I try to pack gingko, which is what helped me. In the two months or so when I had symptoms the first time, I tried a lot of things that I thought would work or might work and nothing did (my doctor's prescription, chiropractic adjustment, balance exercises I found on the internet, ginger, a low dosage of gingko). Then I upped the dosage of gingko and the rocking went away within a day. A couple times I realized I'd forgotten to take it when I felt myself rocking again. I think I had to take it for about a month or so until I could stop the pills and not feel the rocking.

I tried the ginkgo because I read on the web site of some medical school's balance clinic (sorry, I don't have all my materials anymore) that ginkgo may help with balance disorders. Since it operates to improve capillary blood flow, this may be the mechanism. Anyway, I did what research I could about dosage, side effects, who shouldn't take the stuff, etc., before trying it. (I always put this in because folks with bleeding disorders, taking blood thinners, etc. shouldn't take ginkgo. I don't want anyone to be hurt because of something I say.)

I do have a little tinnitus, too. I may be B12 deficient -- with malabsorption, my age, and a vegan diet, this is possible. I've started taking a supplement for this. (The MdDS and tinnitus predated my vegan diet by years.)

My doctor tested my thyroid function and said it was fine. He even said he called up a specialist to see what other tests he might do and said he drew a blank. I can't say the cold hands and feet are a big problem. I don't have pain, numbness, color change, or the like, and the coldness comes and goes. I've talked to others with the same problem and no one ever seems to get an answer. Anyway, now my cold spells provide an interesting counterpoint to my menopausal hot flashes

Who knows, maybe with avoiding the five substances Enterolab says I should avoid some of these niggling symptoms will go away. I don't want to sound like a complainer. Heck, since I stopped the gluten I am feeling so GOOD.

Interesting...

My 'vertigo' was not classic spinning... but a feeling of rocking back and forth, in and out, and inability to walk as though the ground were moving or slanted or something. I also had dropping sensatations, as if I were falling from the sky... while sitting perfectly still.

Cara

I have neuro symptoms from gluten, and a negative biopsy (after being almost gf for half a year and back on gluten 5 weeks) and never had any positive blood work.
I had nevro symptosm last week after being slightly glutened, it was a little bit hard to walk. Lots of typos after being glutened.
I am not D2 or 8, so I must be 1 or 3.
I think the antibodies are in the gut and brain, and too low in the blood to show up positive. (I did see a number and it was 1-somethning with positive being 7 or so)
Nora
Norway