[jenD]

Hi every one, I'm new here, i'm not good with computers so please bare with me, and I dont normaly join forums.
i'm trying very hard to solve a 12 year mystery, after not having alot of luck with dr's i'm kinda doing it alone,
anyway here goes nothing,
after the birth of my daughter 22 years ago, i started getting very bad IBS, i didnt know what it was but knew it was driving me Quite batty, as the insomnia started setting in, i 'd never had great bowels in my whole life so it did'nt suprise me. it kinda crept upon me slowly. and i just learnt to live with it. when my daughter was 9 we travelled for the first time over sea's
when we a long flight about 24 hours, with 1 stop over, when we arrived, i got off the plane rocking, swaying,and had what appered to be an elusion of floating on a boat, it stayed with me for a year, my balance was shot, i'd fall over all the time ect, I worked for a year like this, it never went away, we came home and i went to an ENT who told me i had a thing called Mal de debarquement, in the past 12 years ive had many remissions and then as soon as i get on another moving platform, such as a boat ,plane,rollercoaster,tredmill, i'm back swaying rocking again.
I've seen many drs with no answers, i do know what this syndrome is , and I understand it. thats not my problem! i recently decided to at least cure my IBS by doing an alimination diet, and to my surprise and sheer luck the first thing i gave up was gluten,(wheat). and low and behold my IBS was gone with in about, A month, my head was clear like i never knew it could be, I felt like a million bucks! could read flutently for the first time in my life, as i was always told I had dyslexia.
so I started reading about wheat allergies and found out all about celiacs desease, unfortunatley, I'd already gone on a gluten free diet so could not be properly diagnosed. them (now I"LL get to the piont) I put myself on B12 sublingal tabs, and with in 1 months of taking them i went into remission, no more rocking or balance problems, so i put it down to having celiacs, but the Doc's all said no, i didnt have the runs, or the comen rash, that a celiac gets, so i cant have celiacs and told me that a colon biopsy would show nothing because of the gluten free diet so I just gave up , and didnt bother taking anymore B12, and BANG! 2 months with out b12 and my its back again, rocking and rolling, so i'm back taking it again, my symptoms are many, pain nerve pain, gait probs,head and eye' pain,like electric shocks, legs so tired and sore they'r like tree trunks,hot spots on my legs for no reason, itching all over no rash, palputation. I could go on and on.
now i'm reading about gluten ataxia,and i wanted to know if any one here could elighten me about the tests that should be carried out for gluten atxia, as i personaly believe its has been the gluten all along, that has screwed with my brain and body, that started the ball rolling in the first place,
please if anyone has any ideas, i'd be truly greatfull, thanks jen. so sorry my post was so long.

[jamietwo]

Welcome Jen! The Gluten File (click on it near the top of the forum) has a wealth of information about gluten sensitivity and testing. My family is self-diagnosed too. It started when my 5yo began having chronic tummy aches. The doctors put him through a battery of tests and deemed him "fine" ... while the chronic tummy aches continued. We removed gluten from his (and our) diet and the tummy aches went away. The added benefit was that the rest of the family felt better too. I'm a firm believer in foods affecting our health! Oh yes, and I take 2000mcg of methylcobalamin daily! Good luck!

[jccgf]

Jen,

Your symptoms absolutely sound like they could be caused by gluten sensitivity and/or B12 deficiency, and based on your improvement I think you've stumbled upon an answer for yourself. B12 deficiency is not uncommon in celiac disease/ gluten sensitive patients... so, it may be both things contributing to your symptoms.

I personally had many symptoms associated with a B12 deficiency, including the rocking/swaying vertigo/ataxia, that responded remarkably to B12 supplementation. My daughter had symptoms of what I believe to be early gluten ataxia, along with GI symptoms, skin symptoms, and more... that responded remarkably to a gluten free diet.

The testing is discussed thoroughly in the link I've left below. It is important to be eating gluten for at least six weeks prior to any testing for celiac disease / gluten sensitivity. If you have been off of gluten for even a couple of weeks, the blood tests may not be accurate without doing a gluten challenge of at least six weeks.

It is also important to note that you can have gluten sensitivity/gluten ataxia WITHOUT having celiac disease. This means... even if you test negative for the main celiac antibody tests (anti-tTG, anti-endomysial)... gluten may still be causing many problems.

Most doctors have dropped the antigliadin antibody tests because newer tests are more specific to celiac disease, but the antigliadin antibody tests may be the only positive test result in those with gluten sensitivity that manifests as neurological disease. SO... if you decide to do a gluten challenge and the blood testing... just be sure that they include the antigliadin antibodies in the panel of tests.

You could also consider doing a stool test through Enterolab. Enterolab diagnoses gluten sensitity, but cannot diagnose celiac disease. The antibodies remain in the stool much longer than they remain in the blood, so these tests are accurate even 6-12 months after removing gluten from the diet. But, because this is not a mainstream accepted test, most doctors do not put much weight on the results. On the other hand, you will find many patients who went gluten free based on the results of the stool test... who are very happy campers.

You have another choice, and that is, listen to your body and do what you've already discovered is helping. You don't need a doctor's prescription to make dietary changes. If you attend any celiac support group, you will find many are self diagnosed. Many people stumble upon it by doing an elimination diet, just as you did.

I generally encourage people to start with the blood tests because I think a solid diagnosis is worthing having if you can get it. But, because blood tests are not perfect (some studies show 20% of those with celiac disease are seronegative) and because you can have gluten sensitivity without testing positive for celiac disease.... I believe in a dietary trial regardless of the results. When someone, like you, has a long history of symptoms, and discover for themselves that the symptoms improve on a gluten free diet...well, then that might be all the proof you need. I'm not sure a gluten challenge is necessary in that case. But, that is for you and your doctors to decide.

There are tests available for diagnosing B12 deficiency, too, but if you've been supplementing with B12 they won't be accurate either. B12 levels come up fast, although repairs can take months to years. Because B12 is stored in the liver, it can take a long time for the levels to drop back down after stopping supplementation. At this point, I'd stick with the supplements because you seem to benefit from B12, and keep your B12 level in upper range. B12 is safe, and medical literature supports using it in patients with symptoms of B12 deficiency even when the blood tests are inconclusive. Most people who need it, need it for life. The fact that your symptoms improved while taking it, and returned when you stopped... well, that probably says it all.

Here is some information that might be of interest.

Diagnostic Testing
Gluten Ataxia
Antigliadin Antibodies
Vitamin B12 Deficiency
Symptoms of B12 deficiency

Dr. Hadjivassiliou is the authority on gluten sensitivity and neurological disease, especially gluten ataxia. He has consulted with the doctors of several people I've known from the BrainTalk neurology forums. I believe there may be additional tests he'd suggest, as there are other antibodies that may be associated with gluten ataxia. I think if you want to pursue diagnostics for gluten ataxia you should try to find a neurologist who would be willing to contact Dr. H, or do further research on his own. Gluten ataxia is a relatively new discovery, and not many neurologists know a lot about it.

Here is a compilation of his papers~
Dr. Marios Hadjivassiliou


Cara

[canoe]

Welcome Jen.

Cara has given you such excellent advice that I couldn't add anything else. I hope that you will be able to get some answers.

Marilyn

[jenD]

thankyou so much carra and every one,this week my Dr has decided to give me the gene test for celiacs it is partly covered by the government here in Australia, so i'm off tomorrow to get it, but thats so interesting to hear that you dont have to have celiacs to have gluten ataxia, and my Mri is happening in a few weeks so i'll keep you posted, so thanks again,
Cheers jenny.

[jccgf]

Thanks for the update, Jen.

Yes, Dr. H. has found that 20% of his gluten sensitive neurologic patients have a non-celiac genetic type of HLA DQ1. That means that about 80% DO have a major celiac gene (usually HLA DQ2, sometimes HLA DQ8)... so you might just be one of them. Please let us know about your MRI results and gene testing.

From "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:
"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with CD: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

If the gene testing does not show positive for HLA DQ2 or HLA DQ8, you might want to consider pursuing further testing. I believe the genetic testing for celiac disease only looks for the major genes (DQ2, DQ8)... so there is a diagnostic pitfall there. They can test for HLA DQ1, it just isn't considered a main celiac gene, so they don't .

I found out my family had HLA DQ1 via self ordered Enterolab testing. Dr. Fine also recognizes that those with HLA DQ1 carry a predisposition for gluten sensitivity (only rarely celiac disease... something like 1% of biopsy proven celiacs are HLA DQ1.. it happens, but only rarely).

Good luck!

Cara

[NancyM]

Jen, your story is fascinating!

How strict are you on the GF diet now?

[jenD]

i'm so sorry i didnt get back soon i live in Australia and i'm moving house at the moment, thankyou so much for the extra info. Nancy and every one until you wrote i didnt know gluten could effect some one with out celiacs, that s strange, but i understand its an auto immune thing. well i thought i was doing well eliminating gluten , ive never had any typical signs of celiacs , but after trying to eliminate gluten for 14 months, if i acidently have gluten my lips swell and my mood gets very very bad, how wierd is that, i knew i wasnt copeing emotionaly and it was effecting me but this is all new to me. my musclular probs , pain , and nerve probs on top of gait issues are worsening, including my memorie and dyslexia, my hands wont type and i feel as if i'm on a rocky boat all the time every day, some days are worse than others , my legs went from under me the other day.
but i still feel i'm on the right track,thanks to you all , but this disease i DO know i have regardless of what the DR say is slowly killing me! the advice ive had from this websight is amazing and i thank you all so very much , its helping me with my strength to know someone knows i'm not telling fibs. for me walking to the kitchen is like walking a marathon my heart is having palps and i'm so tierd i want to just thro it all away, its invisable you see HA!
untill i fall in the dark or fall to pieces, which is happening more often lately, god help me , i want my old wonderfull life back. i'm so lucky to have an amazing man in my life , my husband believes me he see's me every day losing control, slowly. bugga i'm making my self cry. thanks again soooo very much, ill let you all know soon about whats hapening ive so many questions for the DR"S they are gona hate me, he he
Hugs to you all jen from oz

[jenD]

Hi every one its jen D,well ive almost finnished moving house.
and ive had something very interesting happen during this period.
I was forced to be off the computor while moving house for four days well in that time even with stress , late nights, my gait and rocking , and electric type head aches on right side have subsided alot.
then today i asked my hubby to set up the computer so i could check my emails and BANG!!!!! with in 5 minutes of computer work my head started tingling electric shock type pain running up my head again and rocking sensation came on full force, now i'm starting to think i have more than 1 issue here,understanding that my suspected celiac has taken its toll on my body casueing all sorts of things. from muscle weakness all over , fatigue all the time, ataxia. i think the flickering of the refresh thing on the computor could be causeing some sort of silent type epilepsy, my real father suffered from a very mild for of epilepsy and i'm thinking i'm on to something here, any idears would be truly apriciated, thank you once again for your comments and best wishes, my celiacs gene test is going to take 3 weeks to get my results so no news yet kind regards Jen from Australia.

[diamondheart]

Hi Jen,

That's very interesting about the computer. What kind of monitor do you have? Some of the computer monitors have this cycling thing that happens. The human eye doesn't pick it up, but it does affect some people's brains. My hubby works in the display industry, and I think he was telling me that liquid crystal screens do not do this (flat panel displays). I'll have to confirm that with him when he gets back from his business trip.

Claire