Ironic

[Claire]

I am sure all you suffering as well as recovering celiacs will think I am bit 'off' to be disappointed but I definitely am. Depressed in fact.

My genetic test came back from Kimball Labs. Negative. I do not have Celiac Disease.

I should be happy - right? I am not. It would have been by far the lesser of two evils.

I had hoped that at long last I would have something definite. This nonsense has been going on most of my adult life.

This leaves me with only a few options left. The recent NIH test was to determine whether the ataxic condition that I have is a genetic disorder. If it is it will be much more threatening than celiac because it will be progressively degenerative with neither treatment or cure.

If that test is also negative then I have one option left - a non-celiac gluten sensitivity. Kimball Labs did not test for that. I went there because insurance would cover the test and I figured I would know at least something for certain - and of course now I do.

If NIH genetic test is also negative then Enterolab will be my last stop, If that too is negative then I am back to square one - with a progressing ataxia of unknown cause.

I am Gluten-free Casein-free and will continue to be until I find some good reason not to be.

Thanks to all who have shown interest in my ongoing saga. Claire

[ravenwoodglass]

Are you feeling any better gluten-free? I suffered from gluten ataxia from childhood which eventually got so bad I had to use canadian canes to get around and my ex-husband bought and remodeled a house for me because we thought I would be in a wheelchair soon. After a few months gluten-free the canes became a wall sculpture. Did they do an MRI? If they did get your hands on the films and see if there were any UBOs (unidentified bright objects), these are diagnostic for celiac disease in Europe, not recognized as anything other than an 'I don't know" by neuros here. It makes no sense to me that Kimball labs did not look for gluten intolerance in their tests, why? So they can do it again and get more money would be my guess. Sorry the cynic in me is coming through.

If being gluten-free is helping please continue, and if you are not already taking sub-lingual B12 you may want to get some (gluten-free of course), this helped me a lot in speeding my recovery from the neurological effects and it won't do any harm.

[skoki-mom]

I can understand your disappointment at not having an answer. You do deserve to know what is making you feel unwell, at least then you would have a better chance of treating it most effectively. Sorry it wasn't what you hoped for.

[debbiewil]

Yes, Kimball only tests for the 2 gluten sensitive, celiac genes, DQ2 and DQ8. But the non-celiac gluten sensitive gene DQ1 is the one most often associated with nuerological damage, like ataxia. Even if you don't have DQ2 or DQ8, you could still have DQ1 and gluten ataxia. I know, it's expensive, but the Enterolab test is probably worth it, if the NIH tests don't give you a definate answer.

Debbie

[skbird]

I could be wrong, but I think the EnteroLab genetic test on it's own is $95? Not horrible. Yes, DQ1 is highly associated with gluten ataxia. I have both DQ1 and DQ9, which are both associated with non-celiac gluten intolerance and I can tell you the non-celiac part of it doesn't mean it's any less uncomfortable/disruptive/horrible/frustrating, etc.

I'm sure you'll find good answers. And if a gluten-free diet improves anything for you, then it's still the right decision.

Stephanie

[Nevadan]

Claire,

I know how you must feel - a celiac disease dx would be good news in your case. But from what I read there are still 1-2% of people w/ celiac disease who don't have the DQ2 or 8 genes, so maybe you are one of those. 1-2% isn't all that low a probability - about the same as someone in the general population having celiac disease...

Of course as you are well aware, if you can find a way to get a DNA test for DQ1, that could explain some things.

Best wishes for a negative result on your recent NIH tests.

George

[Nevadan]

I could be wrong, but I think the EnteroLab genetic test on it's own is $95? Not horrible. Yes, DQ1 is highly associated with gluten ataxia. I have both DQ1 and DQ9, which are both associated with non-celiac gluten intolerance and I can tell you the non-celiac part of it doesn't mean it's any less uncomfortable/disruptive/horrible/frustrating, etc.

I'm sure you'll find good answers. And if a gluten-free diet improves anything for you, then it's still the right decision.

Stephanie

<{POST_SNAPBACK}>

My wife just recently had the DNA only test by Enterolab. The cost was $150.

I agree with Stephanie about the non-celiac disease part - as I sit here with my pair of DQ1's

George

[tarnalberry]

just echo'ing nevadadan's comments: the two genes tested for (for celiac disease by major labs) are the only two genes *currently identified* as contributing to celiac disease. those two genes do not cover ALL cases, so it can't absolutely rule it out.

[VydorScope]

I tell you what I am gonna be upset if I am not celiac disease when I get tested in NOvember, so I know how you feel. celiac disease would be a nice ANSWER with an assoicated ACTION to take to FIX the PROBLEM.

[Claire]

Are you feeling any better gluten-free? I suffered from gluten ataxia from childhood which eventually got so bad I had to use canadian canes to get around and my ex-husband bought and remodeled a house for me because we thought I would be in a wheelchair soon.  After a few months gluten-free the canes became a wall sculpture. Did they do an MRI? If they did get your hands on the films and see if there were any UBOs (unidentified bright objects), these are diagnostic for celiac disease in Europe, not recognized as anything other than an 'I don't know" by neuros here. It makes no sense to me that Kimball labs did not look for gluten intolerance in their tests, why? So they can do it again and get more money would be my guess. Sorry the cynic in me is coming through.

If being gluten-free is helping please continue, and if you are not already taking sub-lingual B12 you may want to get some (gluten-free of course), this helped me a lot in speeding my recovery from the neurological effects and it won't do any harm.

<{POST_SNAPBACK}>

Thanks for this reply. Kimball tests only for Celiac - not for the sensitivity. I knew that when I had the test. Insurance paid for the test but won't pay for Enterolab where I would have seen both test results. I was being frugal while at the same time working on a process of elimination.

Celiac is now eliminated. Yes, I have had MRI. I would not have been referred to NIH Neurology Motion (study) without it. Refering neurologist and several from the NIH panel are looking for a specific genetic ataxia - not caused by gluten but they do suggest being gluten-free. Those test results will not be returned until early to mid January. I don't think this is the diagnosis but I may be wrong. Time will tell. Claire

[Claire]

I could be wrong, but I think the EnteroLab genetic test on it's own is $95? Not horrible. Yes, DQ1 is highly associated with gluten ataxia. I have both DQ1 and DQ9, which are both associated with non-celiac gluten intolerance and I can tell you the non-celiac part of it doesn't mean it's any less uncomfortable/disruptive/horrible/frustrating, etc.

I'm sure you'll find good answers. And if a gluten-free diet improves anything for you, then it's still the right decision.

Stephanie

<{POST_SNAPBACK}>

I was checking Enterolab again last night. I really want more than a genetic test for 'sensitivity'.

Right now there 'combinations' do not offer what I want. I would have to have the 'top' one - the whole thing - in order to get the few things I need to know that I don't know.

Do I have a genetic gluten sensitivity>

Am I (still) reactive for eggs, casein and yeast?

If I can contain my impatience, I will wait until the NIH tests come back in January. That represents yet another process of elimination. If that test is negative - then the next subject matter is genetic gluten sensitivity.

Claire

[FaithInScienceToo]

Dear Claire,

I received an e-mail telling me that there was a reply to my casein antibodies post - it turned out to be your supportive post to me in which you also shared about learning of your test results, and about your writing this post after I had 'signed-off' on my last post.

After reading it, I very much wanted to sign back on just to tag on here -

It is interesting to learn that DQ-1 is the gene most likely to cause ataxia - and, as much as I hate to say it, I hope you will find out via Enterolab that you have it, and I hope that staying gluten-free/CF WILL bring you relief, in time.

I also wanted to let you know that I, and many others (if not all others) on here, have found you to be a very smart (and generous/compassionate) woman, and so I know that you will do the best that you can with each new piece of info you receive - AND, that's all any of us can do.

Knowing this about you gives me great hope for you, and I do also hope that you can feel positive about that aspect of yourself, too.

There was an M.D. years ago who wrote a book entitled, "You can't afford the luxury of a negative thought." I have come to understand that statement -

"Keep the faith."

With love and all good wishes for you,

Signing-off, again, for 'an unknown while,'

Gina, "Faith In Science Too"

[Claire]

How thoughtful of all of you who have responded to my info and rant.

I hear you all. Thanks so much for sharing and for caring about someone you don't know exccept for a name on a page.

I had been on a very restricted diet for many years before going totally gluten-free in August. The most distressing symptoms had been relieved long ago so it is hard to recognize what the benefits of the tighter restriction really are. I do think it has caused me to recognize 'reactives' (non-gluten_ than before.

It was the ataxia that set in motion all this testing - not the general type of celiac symptoms.

I have no doubt about a sensitivity to gluten - or perhaps wheat only. I can't eat a piece of bread without a reaction!

Nice to hear from all of you. It is much appreciated - a boost for my sagging spirits. Claire

[tiredofdoctors]

Dear Claire, I hate to say it because it sounds unreal that I'm stating this about you NOT having celiac disease, but I am so sorry. I was hoping that this whole thing would have been gluten intolerance --- period --- and you could be assured that no further progression would happen as long as you were gluten-free. I can't imagine what you're feeling right now. I'm hoping that you can get some further testing done and get some real answers. This whole thing is frustrating, at best, yet participating in a study at NIH, to me, brings of the promise of answers -- finally. To then have the cards tossed up in the air, again, must have been awful. From what I know about you from here, I know that you won't give up, so I'm not even going to tell you to do that! Just know that, even over the internet, you're not alone, and we're all praying for and supporting you. Take care of yourself . . . . Lynne

[Claire]

Dear Claire,  I hate to say it because it sounds unreal that I'm stating this about you NOT having celiac disease, but I am so sorry.  I was hoping that this whole thing would have been gluten intolerance --- period --- and you could be assured that no further progression would happen as long as you were gluten-free.  I can't imagine what you're feeling right now.  I'm hoping that you can get some further testing done and get some real answers.  This whole thing is frustrating, at best, yet participating in a study at NIH, to me, brings of the promise of answers -- finally.  To then have the cards tossed up in the air, again, must have been awful.  From what I know about you from here, I know that you won't give up, so I'm not even going to tell you to do that!    Just know that, even over the internet, you're not alone, and we're all praying for and supporting you.  Take care of yourself . . . . Lynne

<{POST_SNAPBACK}>

Hi there. Thank you so so much for your kindness. I really teared up on this one. I sure need every understanding word i can get right now. The next two months is going to seem six months long I am sure. Claire

[Nevadan]

How thoughtful of all of you who have responded to my info and rant.

I hear you all.  Thanks so much for sharing and for caring about someone you don't know exccept for a name on a page.

Claire

<{POST_SNAPBACK}>

If I may say so, often what we know about someone as "a name on a page" is way under rated. Here the "name" is a tag related to a person's brain and thought processes - it's these latter aspects that really count. Besides, physical appearance/proximity often triggers all kinds of prejudices, fears, etc. I don't know about others but my mind doesn't run nearly fast enough to have meaningful face-to-face conversation about lots of things discussed here (sometimes doesn't even keep up with my typing ), so physical proximity is also of dubious merit. By participating on a forum such as this we kind of expose the part that matters most - our brains.

So Claire, hang in there - and here. Keep sharing those thoughts. Maybe with all this brain sharing, we'll all benefit.

George

[ianm]

I don't know about others but my mind doesn't run nearly fast enough to have meaningful face-to-face conversation about lots of things discussed here (sometimes doesn't even keep up with my typing ), so physical proximity is also of dubious merit.  By participating on a forum such as this we kind of expose the part that matters most - our brains.

<{POST_SNAPBACK}>

I got my Bachelors degree from University of Phoenix by taking mostly online classes and got far more out of them than any "real" in-person class I have ever taken. In person, real-time conversations are really difficult for me sometimes because my mind likes to think things through first. Unfortunately conversations can't wait for me to think for two days before I open my mouth.

[Claire]

If I may say so, often what we know about someone as "a name on a page" is way under rated.  Here the "name" is a tag related to a person's brain and thought processes - it's these latter aspects that really count.  Besides, physical appearance/proximity often triggers all kinds of prejudices, fears, etc.  I don't know about others but my mind doesn't run nearly fast enough to have meaningful face-to-face conversation about lots of things discussed here (sometimes doesn't even keep up with my typing ), so physical proximity is also of dubious merit.  By participating on a forum such as this we kind of expose the part that matters most - our brains.

So Claire, hang in there - and here.  Keep sharing those thoughts.  Maybe with all this brain sharing, we'll all benefit.

George

<{POST_SNAPBACK}>

Thanks, George. I agree. I really enjoy the contacts here - helpful, kind and honest. That hones thing is real important!

Now, if I am remembering correctly you have those genes for gluten sensitivity. Is that right? If so can you tell me how you were diagnosed and by whom? If this is too personal, then by all means just say so. Thanks. Claire

[Claire]

I got my Bachelors degree from University of Phoenix by taking mostly online classes and got far more out of them than any "real" in-person class I have ever taken. In person, real-time conversations are really difficult for me sometimes because my mind likes to think things through first. Unfortunately conversations can't wait for me to think for two days before I open my mouth.

<{POST_SNAPBACK}>

Now don't be offended! - but your comment made me think of the commercial with the guy who 'doesn't think too fast on his feet; Seriously, I can see why going to College online might be a great experience - this forum is a great example of learning and sharing.

Glad you went gluten-free. One could be terminal while doctors play their guessing games. Claire

[Nevadan]

Now, if I am remembering correctly you have those genes for gluten sensitivity. Is that right? If so can you tell me how you were diagnosed and by whom?  If this is too personal, then by all means just say so.  Thanks.  Claire

<{POST_SNAPBACK}>

Claire,

No problem. I was tested by Enterolab; the results were:

Fecal Antigliadin IgA 22

Feca Antitissue Transglutaminase IgA 17

Normal for both of the above <10

Fecal Fat Score 84 (normal <300)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0602,0602

(per Enterolab report: Molecular equivalent DQ1 subtype DQ6 - twice)

My initial intro to gluten sensitivity was by reading an article describing the strong relationship between celiac disease and osteoporosis which I was dx'ed with 5 yrs ago at 55 yrs old after my older brother was also dx'ed with osteo. After researching celiac disease I found some moderate gastro symptoms I had might be related to gluten, so I decided to try the gluten-free diet. I was really impressed when the gluten-free diet resolved the gastro symptoms within 48 hrs. The response of the gastro stuff really got my attention with respect to gluten, so I decided to continue in hopes of finding the root cause of the osteo.

I've been gluten-free since June (CF since July). I also have had mild anemia all my life and am planning to use this as another measure of the effectiveness of the gluten-free diet for me - I will remeasure it after 6 mo gluten-free. Unfortunately the osteo is such a slow moving disease it's going to be harder to relate to gluten, but I hope to anyway - it will just take longer.

I also have a problem with Restless Leg Syndrone and numbness of one foot and tingling toes which I suspect is peripheral neuropathy (tests show my B12 to be within the normal range so this may be due to gluten as well). After a few months gluten-free the RLS and PN seems to be slowly improving which also helps validate the gluten-free diet for me.

All said, I'm still trying to figure out exactly what the effects of gluten are for me, assuming it's not celiac disease based on the gene test.

Hope I answered your question.

George

[Claire]

Claire,

No problem.  I was tested by Enterolab; the results were:

I've been gluten-free since June (CF since July).  I also have had mild anemia all my life and am planning to use this as another measure of the effectiveness of the gluten-free diet for me - I will remeasure it after 6 mo gluten-free.  Unfortunately the osteo is such a slow moving disease it's going to be harder to relate to gluten, but I hope to anyway - it will just take longer.

I also have a problem with Restless Leg Syndrone and numbness of one foot and tingling toes which I suspect is peripheral neuropathy (tests show my B12 to be within the normal range so this may be due to gluten as well).  After a few months gluten-free the RLS and PN seems to be slowly improving which also helps validate the gluten-free diet for me.

All said, I'm still trying to figure out exactly what the effects of gluten are for me, assuming it's not celiac disease based on the gene test.

Hope I answered your question.

George

<{POST_SNAPBACK}>

Yes indeed - and thank you.

A real diagnosis would do me a world of good right now.

Do you take any meds for the osteo? I am fairly anti-med but i did try one. Gave it up when I decided feeling that bad in order to 'maybe' improve was not worth it. Mine is not slow, unfortunately. It is RA rather than osteo that has been connected to celiac disease/gluten - as far as I know. I will try to remember to send you a PM on arthritis. It is off topic for here.

I have heard that Restless Leg has a gluten connection. I have a daughter with that.

From all I read it seems that those who have the sensitivity genes as opposed to celiac disease genes have less intestinal involvement and more neurological involvement. Whatever turns out to be the source of my problem - the symptoms are neurological - at least now. I have a life history of GI issues but not of the severity of some here on the forum.

Thanks again for the info. Claire

[ianm]

Now don't be offended!  - but your comment made me think of the commercial with the guy who 'doesn't think too fast on his feet; 

<{POST_SNAPBACK}>

I am the prototype for that guy.

[Nevadan]

Do you take any meds for the osteo? I am fairly anti-med but i did try one. Gave it up when I decided feeling that bad in order to 'maybe' improve was not worth it. Mine is not slow, unfortunately.  It is RA rather than osteo that has been connected to celiac disease/gluten - as far as I know.  I will try to remember to send you a PM on arthritis. It is off topic for here.

I have heard that Restless Leg has a gluten connection. I have a daughter with that.

From all I read it seems that those who have the sensitivity genes as opposed to celiac disease genes have less intestinal involvement and more neurological involvement.  Whatever turns out to be the source of my problem - the symptoms are neurological - at least now.  I have a life history of GI issues but not of the severity of some here on the forum. 

Thanks again for the info.  Claire

<{POST_SNAPBACK}>

With great reservation I do take Fosamax. Having the dx at 55 I decided to opt for Fosamax which has done remarkably well at improving density. My dr first tried Calcitonin(sp?) which is a more natural solution, but it didn't help at all. It's the permanence of Fosamax that bothers me - it remains in the bones for years so when bad side effects appear, it's hard to do anything about them. I've already seen an article about "Dead Jaw Bone" related to F. I would love to discover that the gluten-free/CF diet would be able to improve/maintain bone density w/o having to continue F.

I also share your understanding of the relationship between the gluten sensitivity genes and neurological issues. I'm watching my RLS and PM with great interest.

George

[Claire]

With great reservation I do take Fosamax.  Having the dx at 55 I decided to opt for Fosamax which has done remarkably well at improving density.  My dr first tried Calcitonin(sp?) which is a more natural solution, but it didn't help at all.  It's the permanence of Fosamax that bothers me - it remains in the bones for years so when bad side effects appear, it's hard to do anything about them.  I've already seen an article about "Dead Jaw Bone" related to F.  I would love to discover that the gluten-free/CF diet would be able to improve/maintain bone density w/o having to continue F.

I also share your understanding of the relationship between the gluten sensitivity genes and neurological issues.  I'm watching my RLS and PM with great interest.

George

<{POST_SNAPBACK}>

I gave Fosamax a three month trial. I coughed constantly and got to where it was difficult to eat because I was just coughing and then choking. I gave it up. I take Soy Ipriflavone and drink one glass of soymilk each day and take a special osteoarthritis formula that I buy online - it is a multivvitamin but with all mineral essential for bone building. At my last scan I had not improved but had not declined either which the doctor said I would without the meds. Next scan is in January. Claire

[WRowland]

I also found my gluten problems while researching for a treatment for my osteoporosis. Very strong history in my Irish family, etc.

Have a few things for you to think about. Gluten-free will definitely address the subtler mal-absorption problems. Good intake of Ca-Mg-Vitamin D and other trace minerals is critical, but the mal-absorption has to be addressed first.

Another benefit of the gluten free diet is that it is a radical change. So radical that you might as well go all the way to a sound, nutrient dense diet, period. For osteoporosis, this means addressing calcium balance. Search on that subject for a full explanation, but basically it means taking in more than you are losing.

For most Americans that means getting real honest about what we're eating. Gluten is a big part of that, but just the beginning. Over consumption of protein is also a huge factor, sodium intake and over all pH of the diet is critical. I have found a free website that has been invaluable for this: www.nutritiondata.com. Start with ND Quick Start in upper left hand corner and go from there.

I also recommend highly the book "Strong Women Stay Young". Hate the title, but the book is life changing.

Osteoporosis is complex to say the least, and best attacked on several fronts. Think of it as a four legged stool. One leg is Calcium Balance, another is hormone platform, a third is weight bearing exercise, and the last is stress management.

A gluten-free diet that is truly nutrient dense and not just replacing one nutrient poor grain for another is a great step forward to establishing Calcium Balance. But the stool will still fall if the other three legs are missing.

Hope this helps...