Results From Enterolab

[Jenn2005]

Hi. I just got my husbands results back from Enterolab and was hoping someone could help me.

Gluten Sensitivity Testing

Fecal Anitgliadin IgA 17 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 99 Units (Normal Range <300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0201, 0503

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 13 Units (Normal Range <10 Units)

I think I understand most of this - The report stated that he has the Celiac gene HLA-DQ2 if I understand it correctly but what is the 0503 is this another gluten sensitive gene or part of the DQ2 gene??

Any help with this would be greatly appreciated.

Jennifer

[Rachel--24]

I think I understand most of this - The report stated that he has the Celiac gene HLA-DQ2 if I understand it correctly but what is the 0503 is this another gluten sensitive gene or part of the DQ2 gene?

<{POST_SNAPBACK}>

I'm no expert on the subject but I *think* the 0503 is a seperate gluten sensitivity gene. I have 0301 and 0501...2 gluten sensitivity genes but no celiac gene. I think we get one from each parent.

[skbird]

Hi -

It looks like your husband has two gluten sensitive genes - DQ2, one of the two Celiac genes, and DQ5 (or DQ1, subtype 5). This second it technically considered DQ1, for all intents and purpose and has been associated with gluten ataxia and neurological reactions to gluten.

It's good your husband doesn't seem to have any malabsorption or positive result on the Ttg (anti-tissue) part of his test. Is he already gluten free?

The positive score on the IgA is reason enough to go gluten free, even if he doesn't have obvious symtpoms, coupled with his having one Celiac gene and another gluten sensitive backs that up.

Hope this helps. It's confusing, I know!

Stephanie

[Jenn2005]

Rachel & Steph thanks for the replies. What exactly is gluten ataxia? And what kind of neurological reactions are seen as a side affect from this gene?

Yes he is gluten free. He has been gluten free for several months now with the exception of a 1 week gluten challenge for a repeat biopsy. He had a biopsy begining of July 2005 that showed changes compatible with celiac but the doctors wouldn't make a definate dx because the bloodwork was negative. They drug it out thru October and did a repeat biopsy on October 10 which was negative. I took it that it meant the diet was working it the damage was gone after 3 1/2 months, but the doctors said it meant it wasn't celiac & they wanted to do more test. This is why we ordered the test kit from Enterolabs so that we could try to get some answers to go along with the fact that the diet was obviously working. Any info on the gluten ataxia & neuro. reactions would be great.

Thanks,

Jennifer

[nikki-uk]

Hi Jennifer.

My husband has suffered from 'Gluten Ataxia'(Although not been officially diagnosed as such-he's still under investigation by the Neurologist)

His symptoms were:

Unsteady on his feet,

Clumsy(always dropping things)

Shuffling gait when walking

'Brain Fog'(Unable to concentrate,focus on anything,feeling 'detatched' from his surroundings)

Numbness,tingling and pain in his feet and legs

Bad co-ordination.

Strange shooting pains in head(like electric shocks)

I know it is thought that if you posess the DQ1 gene you are more likely to suffer with neuro problems rather than bowel ones.

Unfortunately I am in the UK & the docs don't do gene typing on the NHS.I would however love to know what (if any) coeliac related genes he has.

My hubby also has had neg bloods,but positive biopsy with extensive villous atrophy ?

Seem to me there's alot to be learnt yet!

Hope this helps you understand some of the symptoms

[Rachel--24]

Hi Jennifer.

My husband has suffered from 'Gluten Ataxia'(Although not been officially diagnosed as such-he's still under investigation by the Neurologist)

His symptoms were:

Unsteady on his feet,

Clumsy(always dropping things)

Shuffling gait when walking

'Brain Fog'(Unable to concentrate,focus on anything,feeling 'detatched' from his surroundings)

Numbness,tingling and pain in his feet and legs

Bad co-ordination.

Strange shooting pains in head(like electric shocks)

I know it is thought that if you posess the DQ1 gene you are more likely to suffer with neuro problems rather than bowel ones.

<{POST_SNAPBACK}>

Hmmm...I have DQ1 and those are alot like my symptoms. I don't really have bowel symptoms but I did have malabsorption.

I had those shooting pains in my head when I first got sick. The neurologist couldnt find anything wrong and I had a normal MRI. I also get numbness, burning and tingling. Brain-fog and depression were my worst symptoms. I did bump into walls alot but my co-ordination was good. Is this considered "Ataxia"? I'm not really sure what Ataxia means.

I also had TMJ (the specialist said he didn't even know where to begin with me) and pain in my teeth and eyes. Since going gluten-free I dont have TMJ at all anymore.

[nikki-uk]

Hi Rachel,-

I looked up the definition of the word 'Ataxia' in the dictionary

It means-'Difficulty controlling body movements'.

My husbands Neurologist agrees that hubby has 'some Ataxia',and has said some of his reflexes are not right.He is currently waiting to have an 'EMG' in a London hosp(long waiting list)An Emg is where an electrode is placed under the skin to stimulate the muscle-and to measure its efficiency.

Unfortunately you can get alot of odd looks when you say to the doc'Could it be Gluten Ataxia'.-But the doc has assured hubby he will get to the bottom of it-w'ell see!

To describe my hubbie at his worse -he walked like he was drunk!

I have noticed since Terry (hubby) has has a course of steroids(for refractory coeliac) and has put some (much needed!) weight on his movements are alot better.(although he still gets those shooting pains in head)

Whether it was Gluten Ataxia-or the result of vitamin deficiencies through being so malnourished-that's the big question.

Without a doubt in my opinion it's definitley related to Gluten somehow

I'm hoping,when we next see the neurologist that I can talkin him into doing an MRI of his brain.

Unfortunately in the uk the health system is stretched to the max and I know there would be a huge waiting list(can't afford private health care-sigh!)

[Rachel--24]

Hi Rachel,-

I looked up the definition of the word 'Ataxia' in the dictionary

It means-'Difficulty controlling body movements'.

<{POST_SNAPBACK}>

Thanks for the info.

From that description I would say I don't have Ataxia. My muscles and body movements have been fine. The neurologist checked me out more than once and my movements and coordination were good. I had an extreme amount of pain in my head though.

[Jenn2005]

I have another question. Does everyone have 2 of the HLA genes or can you have less or more? Like my husband has the DQ2 & DQ1 - does this mean he got one gene from his mother and one from his father? I am so confused. I understand the results I just am baffled with all this gene stuff. In Dr. Fine's explanation it says if you have one gluten sensitive gene, then your offspring have a 50% chance of rec. the gene from you, and at least one of your parents passed it to you. Having two copies of a gluten sensitive or celiac gene means that each of your parents, and all of your children will possess at least one copy of the gene. So I guess what I'm trying to figure out is does he have 2 copies of the gluten sensitive gene like Dr. Fine is talking about or does that mean something else? Thanks for your replies.

Jennifer

[skbird]

Hi -

From what I understand, if you have two of these genes, you got one from each parent. That makes sense to me, but what I am not clear on is does anyone only have one of these sorts of HLA genes? Because everyone I've seen post here has two, though not always one of the two Celiac genes.

I haven't been able to figure out what that means.

Back to neurological symptoms - they can be expressed by migraine, head pain, nerve pain (Rachel!!!) and also mood issues, like depression, anger, frustration. Many gluten-sensitive people have emotional issues, and they improve when they go gluten free and worsen when they are glutened. I know for me I get very deeply depressed, but it usually only lasts a day or two. Now that I am aware of it, I can usually get through it ok, but at first it seemed the world was ending!

Anyway, hope this helps.

Stephanie

[Rachel--24]

Back to neurological symptoms - they can be expressed by migraine, head pain, nerve pain (Rachel!!!) and also mood issues, like depression, anger, frustration.

Stephanie

<{POST_SNAPBACK}>

Well...I definately had all those. I took strong pain meds everyday till I changed my diet...havent taken any meds in 6 months...although I've had a handful of days where I was tempted. The mood stuff...well...those were the worst. I was a bit out of control for awhile.

I think thats why I get so much support w/ the diet...nobody wants to see me glutened ever again.

[Claire]

Hi Jennifer.

My husband has suffered from 'Gluten Ataxia'(Although not been officially diagnosed as such-he's still under investigation by the Neurologist)

His symptoms were:

Unsteady on his feet,

Clumsy(always dropping things)

Shuffling gait when walking

'Brain Fog'(Unable to concentrate,focus on anything,feeling 'detatched' from his surroundings)

Numbness,tingling and pain in his feet and legs

Bad co-ordination.

Strange shooting pains in head(like electric shocks)

I know it is thought that if you posess the DQ1 gene you are more likely to suffer with neuro problems rather than bowel ones.

Unfortunately I am in the UK & the docs don't do gene typing on the NHS.I would however love to know what (if any) coeliac related genes he has.

My hubby also has had neg bloods,but positive biopsy with extensive villous atrophy ?

Seem to me there's alot to be learnt yet!

Hope this helps you understand some of the symptoms

<{POST_SNAPBACK}>

As I have ataxia, I will add my comments to this post. Not everyone will display the same symptoms. Ataxia generally refers to gait and balance disturbance - difficulty walking without staggering or lurching. Some people have a stumbling gait. As the area of the brain affected is the cerebellum - there may also be speech, swallowing and eye problems. I have never heard of brain fog associated with ataxia but definitely with celiac. Poor hand coordination may develop - also essential tremors - usually arms and hands but sometimes legs. The numbness and tingling is probably peripheral neuopathy.

The root cause of my ataxia is still being investigated (at NIH). I do not have Celiac Disease but have not been tested for genetic gluten sensitivity. I am Gluten-free Casein-free, Neurologist considers gluten to be a threat to anyone with a neurological disorder or disease. Claire

[Nevadan]

I have another question.  Does everyone have 2 of the HLA genes or can you have less or more?  Like my husband has the DQ2 & DQ1 - does this mean he got one gene from his mother and one from his father?  I am so confused.  I understand the results I just am baffled with all this gene stuff.  In Dr. Fine's explanation it says if you have one gluten sensitive gene, then your offspring have a 50% chance of rec. the gene from you, and at least one of your parents passed it to you.  Having two copies of a gluten sensitive or celiac gene means that each of your parents, and all of your children will possess at least one copy of the gene.  So I guess what I'm trying to figure out is does he have 2 copies of the gluten sensitive gene like Dr. Fine is talking about or does that mean something else?  Thanks for your replies.

Jennifer

<{POST_SNAPBACK}>

We all have two copies of each gene, one from each parent. Each copy comes in different flavors, different alleles in tech-talk. So having a DQ2 & DQ1 implies that one parent had at least one DQ2 and the other parent at least one DQ1. So it looks like your husband has two HLA-DQ (HLA-DQ refers to a particular place on chromosome #6(I think that's the one)) genes that make him susceptible to celiac disease (DQ2) and gluten sensitivity with neuro emphasis (DQ1); however, they do not necessarily mean he actually has either celiac disease or GS - he's just susceptible. The DQ1/GS connection is somewhat controversial except among some researchers like Dr Fine and a few others, but their arguments seem to be pretty convincing. You might want to take a look at "The Gluten File" at the BrainTalk "Gluten Sensitivity" forum at: Open Original Shared Link (1st item on the index) There are several references there related to the neurological effects of gluten sensitivity.

Re DQ2, as I recall, 90% of the people with celiac disease have at least one copy of this version of the HLA-DQ gene. To keep this in perspective, it is estimated that about 1% of the population has celiac disease; however, about 50% of the population has the DQ2 gene version. For some reason not well understood most people with the DQ2 never develop celiac disease even though the risk is there; hence dr's like Dr Fine recommend anyone with a DQ2 (or DQ1 by the same argument) should not consume gluten.

Hope this helps.

George

[Claire]

We all have two copies of each gene, one from each parent.  Each copy comes in different flavors, different alleles in tech-talk.  So having a DQ2 & DQ1 implies that one parent had at least one DQ2 and the other parent at least one DQ1.  So it looks like your husband has two HLA-DQ (HLA-DQ refers to a particular place on  chromosome #6(I think that's the one)) genes that make him susceptible to celiac disease (DQ2) and gluten sensitivity with neuro emphasis (DQ1); however, they do not necessarily mean he actually has either celiac disease or GS - he's just susceptible.  The DQ1/GS connection is somewhat controversial except among some researchers like Dr Fine and a few others, but their arguments seem to be pretty convincing.  You might want to take a look at "The Gluten File" at the BrainTalk "Gluten Sensitivity" forum at: Open Original Shared Link (1st item on the index)  There are several references there related to the neurological effects of gluten sensitivity. 

Re DQ2, as I recall, 90% of the people with celiac disease have at least one copy of this version of the HLA-DQ gene.  To keep this in perspective, it is estimated that about 1% of the population has celiac disease; however, about 50% of the population has the DQ2 gene version.  For some reason not well understood most people with the DQ2 never develop celiac disease even though the risk is there; hence dr's like Dr Fine recommend anyone with a DQ2 (or DQ1 by the same argument) should not consume gluten.

Hope this helps.

George

<{POST_SNAPBACK}>

Heh, George - great post. Sharp as nettle! Been doing your homework. Claire

[Jenn2005]

George

Thanks for the in depth explanation. It really helped and thanks for the link to the Gluten File. Good Info.

Jennifer