My Result From Entrolab

[Linda56]

Here is what entrolab sent me as a result of my test. Not sure I get it completely. I do but not completely. Should I request a biopsy of my intestines? My doctor did antibody testing through blood work and it was normal. Does that mean I am not having damge enough to produce antibodies? Thanks anyone

Linda

EnteroLab www.enterolab.com

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Specialized Laboratory Analysis for Optimum Intestinal and Overall Health

Kenneth D. Fine, M.D.

Medical Director

10875 Plano Rd., Suite 123 Dallas, Texas 75238

Final Laboratory Report

Date: 10/17/2007

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Interpretation Of HLA-DQ Testing: HLA gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

[mftnchn]

According to this, you were only tested for the genes, you were not tested for gluten sensitivity.

You don't have the most common celiac or gluten sensitivity genes, but there are others on this forum with your gene type.

Gene typing only shows whether you have the genetic potential to develop celiac, but nothing more.

If you have symptoms that point to celiac, and you are still eating gluten, you should have the blood tests and biopsy. If you are not eating gluten, you could do the Enterolab gluten sensitivity test.

I am curious why you chose to only do the gene testing?

[Linda56]

I thought that if the gene testing showed no genetic gene then I most diffinately couldn't have celiacs disease. I had bloodwork for antibodies for celiacs done and they were normal. I did a stool test for celiacs last year that was 20. I just thought if this was negative would diffenately tell me I didn't have it.

Linda

[ravenwoodglass]

I thought that if the gene testing showed no genetic gene then I most diffinately couldn't have celiacs disease. I had bloodwork for antibodies for celiacs done and they were normal. I did a stool test for celiacs last year that was 20. I just thought if this was negative would diffenately tell me I didn't have it.

Linda

The stool test actually will tell you more than the gene test. If that was done by enterolab then the 20 on their labs would be a positive for gluten antibodies. Also note that there is a distinction within the medical community between gluten sensitivity and full blown celiac. The damage that is done to our bodies though can be just as severe with gluten sensitive genes as with 'true' celiac genes. I am living proof of that. Genetically I am 'only' gluten intolerant not celiac, but the damage done to my body, some permanent is just as serious and life threatning as anyone with the celiac gene.

[hathor]

I would add that there have been some diagnosed celiacs that don't have a "celiac gene." It isn't common, but it does happen. So a gene test can't even rule out celiac.

The blood testing for celiac isn't that sensitive, I don't think. In other words, there are plenty of false negatives.

If you had a positive stool test from Enterolabs in addition to your genes (and presumably symptoms that caused all this testing), you know you have a problem with gluten.

I don't see the need for biopsies. If the damage hasn't reached the level of showing antibodies in your blood yet, the damage to your intestine probably isn't there yet either.

Did you read this on the Enterolab site:

Open Original Shared Link

Here's another useful article:

https://www.celiac.com/st_prod.html?p_prodid=1417

You haven't mentioned -- have you eliminated gluten for any period or gone gluten-light? That would invalidate blood testing or biopsy.

[Linda56]

No I hadn't gone gluten free. Thing is I mainly live off rice and have for years. Maybe I have been eating a way my body has been telling me for a reason I didn't realize. I have been eating wheat products just that I eat one meal a day and its usually rice based. I am not a big meat eater either. I am home bound from inner ear disease and don't eat like those people that get out and move around working and doing things. I have been told I have inner ear disease. When I eat certain foods or to much food I get acid reflux and experience vertigo from it. The doctors say its the inner ear affecting my stomach making me throw up and have diareaha and vertigo. I have always felt my stomach causes the symptoms. Although on ear testing I don't have functioning balance system. I have read posts from others with ear disease say the same thing as me. I just think there is more going on with some of us that have ear disease like its not coming from the ear. I think some other thing has affected our inner ear system and the doctors haven't connected it yet. My quest to find out about my inner ear problem has led me to the celiac search. I might be way off base. I did find one study that said people with vestibular damage (inner ear system) get nystagumus when thier stomach acid gets low. I have wondered if gluten affects the stomach acid in some way. Nystagmus is a movement of the eyes that give the feeling of vertigo. So to me that in itself reveals something more is going on with the stomach and affecting balance. I guess in 50 years this might be discovered but I will be dead and gone. I know this is off topic but is what I have going on.

I read the links posted hathor thanks very interesting. No I hadn't read that information.

Lin

[hathor]

That's interesting. Do the doctors have a theory as to what your inner ear problem is, that is, the mechanics of it all?

I ask because I have suffered from a balance disorder myself. It is called mal de debarquement syndrome. Following a long boat trip, flight, or bumpy bus ride (the initial problem was the worse and followed an ocean cruise), I would feel like I was on a heavily rocking boat. I had this for a couple months the first time and it was driving me nuts.

I tried all sorts of things, but nothing worked. Then on the web site of the balance center of some medical school (now I wish I had saved the info), I read that there had been some success in treating balance problems with ginkgo. No specific disorders were mentioned, just problems with balance. I didn't hold out a lot of hope, because the doctor's pills, the chiropractic adjustments, the exercises he gave me, the exercises I found online, someone's suggested ginger supplements, etc. hadn't worked. But bingo, within a day of taking ginkgo, the rocking stopped. A couple times I forgot to take it, as I realized when the rocking returned. After a month or so I was able to slowly wean myself off.

Now I take ginkgo when I travel and my problems have been minor to nonexistent.

Although it wasn't spelled out, I think the idea behind ginkgo was that it improves capillary blood flow. This is why it is being looked at for heart disease, circulatory problems, and dementia as well. I may be way off base for your problem, but I thought I would mention it for what it was worth.

I have heard some other people on this board that have some balance problems as well.

From my research I couldn't find any counterindications to taking ginkgo unless one has a bleeding disorder or is on some other medicine that thins the blood.

Just googling the subject right now, I see there are all sorts of links on ginkgo & balance. I also see that ginger may help with balance problems associated with nausea, which may be closer to what you have.

Good luck in figuring it all out. I think a food intolerance can cause dizziness problems. Since you are eating rice and not much meat, perhaps you need an elimination diet. You eat a very limited selection of things that few have problems with for a couple weeks. If you are better, then it is diet related. Then you add one thing back at a time and see what you are sensitive to. Here's a description:

Open Original Shared Link

It is a very laborious process, but it can give you a systematic list of what you can and can't eat.

[Linda56]

Hathor, I do know about mal de debarquement syndrome. I have the feeling of motion all the time but its not from being on a vehicle type thing. The doctors think its damage to the nerves giving off singles that aren't there. I also have a lot of problem focusing my eyes. To me things are moving in my vision even if they are still. If I ride on an elevator I will continue to feel that feeling for some time afterwards. Doctors have said mine is viral, migraine caused so much constriction to the ear it damged it, Menieres disease, autoimmune, genetic and exposure to toxic substances. So they don't know. I tried gingko a little while it gave me migraine in my neck called a carotid migraine. The doctors don't know why I have this problem. I am sorry you have to experience the motion problem I know its a horrible feeling. A nueropsychiatirst Iwas seeing said ginko is easier on people because it makes the blood cells more pliable and then they are able to travel into small capillaries like those in the inner ear. The capillaries in the ear are small more so in some people so it can help if thats the person problem. I know this is to long and involved and could go on and on. I am working on this in different ways and hope sometime something I hit on at least makes one of the problems I have better.

Lin

[gfpaperdoll]

Linda, I think you should do some research on inner ear disease & celiac, I think you will be surprised what you find out. I hope you are very strictly gluten free & really should be grain free - get off that rice - right away !!!! I just had to cut out rice...

I think you should try an elimination diet to find out what your problem is. I think that the doctors are full of a bunch of ..... It seems obvious that your inner ear problems are coming from the gut.

AND you should be completely dairy & soy free. Dairy is notorious for inner ear problems. & do not be eating seaweed, I forget what it is but there is something in seaweed that affects the ears in a bad way. I have a friend with mieneres or something like that, he eats a lot of seaweed & of course will not give up the gluten either...

oh & no salt substitutes or artificial sugar

I feel like something that you are eating is causing your problem & that if you work on it you can figure it out...

good luck -

[ravenwoodglass]

Linda, Could you be experiencing gluten ataxia? Have they ever done any MRI's in the search to try and find the reason for your balance problems? Gluten Ataxia causes the formation of things called bright spots that are visible on an MRI, but many neuros don't know that in the US. I had gotten to the point where I could barely walk without canes or walls to support me. I had been told by many doctors that it was something I just had to learn to live with. My balance issues resolved after I had been gluten free for a few months.

[Linda56]

Thanks for replying to my post. You all are so smart about so much. I need to read up on gluten more and understand what it is. I have been looking at gluten free foods trying to decide how to go about getting off everything. One problem I have is I feel so blah to think of trying to eat different is over whelming. I know I am going to have to do it. I wish I had more fortitude. And then there is the money involved buying the products. But I am going to really try to eliminate some more foods. I know I feel best when I go long term and eat very little of anything. I can't find a doctor that will help me check into any thing unusual. Truthfully some times I feel like dying because I am so tired of the searching and not getting help. No one in my family has ever helped me not parents or husband. My husband will drive me where I want to go but he won't talk to me about any of it. That to makes me feel less motivated. I know he has problems though handling finances and I am sure he feels alone taking care of that and not having someone that works. Anyway, I had an MRI back in 1997 I had to travel to Texas from florida. It was before that test was widly used. On that MRI they said I had an area of tangling but they weren't sure what it was. And told me to come back every year to get it looked at again. Yeah I can travel every year to Texas is what I thought. I showed it to the nuerologist here and he said they didn't know what they were talking about it was a normal area. I am suppose to get another MRI my ear doctor ordered but he is looking at the ear system mainly. Its very frustrating because every doctor only does thier own little area of expertise and then if there is something they don't agree. Before they found out on ear testing I had no balance function they kept telling me it was in my mind. Finally I found a doctor away from the place I live that did the right testing. He was shocked when he discovered I had no vestibular function but I had spent years trying to force myself to do things and couldn't and didn't understand why. I am going on about it again I know we all have problems we contend with. I just thought by this time of my life I wouldn't still be trying to figure it all out. Thanks everyone for helping me I will make changes and see what happens. All will be ok I just get to feeling sorry for myself which doesn't help anythings

Lin

[Linda56]

Doll,

I know with Menieres you have to watch salt and take diuretics. I agree with you there is some connection. Getting some postive result about celiacs maybe being part of my problem helps me feel more motivated cutting out some stuff. I am not sure if this is the right area to post but could you give me a run down on what you eat and drink in a day normal day. I have been searching and just don't know how to get started. I feel hungry all the time as it is. I feel good eating less in general but it takes me a couple weeks before that kicks in. I hope this isn't to much to ask. I don't want to put stress on anyone.

Glass, I have never heard of the ataxia, I am glad you found what helped you. I am interested in what you eat also. I have been trying to eat meat and vegetables. The vegetables really hurt my stomach. What does one drink in place of milk if you can't consume soy or rice milk either. I would be interested how you lived using cane and walls and how it all evolved to where you are today.

[ravenwoodglass]

Glass, I have never heard of the ataxia, I am glad you found what helped you. I am interested in what you eat also. I have been trying to eat meat and vegetables. The vegetables really hurt my stomach. What does one drink in place of milk if you can't consume soy or rice milk either. I would be interested how you lived using cane and walls and how it all evolved to where you are today.

I hadn't heard of gluten ataxia either until about a year after I was diagnosed and had realized that my balance issues were resolving slowly. I also had reflexes again, something I had not had in my legs since childhood. I make it a practice to get copies of all my tests and have squirreled away my MRI films. In doing research on the neurological effects of gluten I found out about gluten ataxia and also found out that the UBOs (unidentified bright objects) that were on my MRI were not just something 'lots of folks have and meaningless'. In some countries they are diagnostic for celiac. The answers were always there for all my neuros they just weren't aware from the 5 minutes of education they get on our disease. Many doctors in the US don't have the faintest idea that celaic can cause neuro issues.

I can't consume soy milk, soy gives me issues similar to gluten, and I haven't found a rice milk that does not contain gluten so I go with Hempmilk. While it makes a lousy coffee creamer it is great on cereal and adds a bit of extra protein and Omegas to my baked goods. I drink the chocolate plain, something I couldn't stomach with other dairy replacement, taste not reaction. I try to eat much as you are now, meats, veggies, brown rice, fruit, beans, nut butters and jellys etc. I eat very little mainstream food and a minimum of specialty gltuen free stuff. I use Kinnickinnick breads, they have no soy or dairy in them at least the Italian, hamburger buns and pizza shells.

How I lived on canes was not very well. With constant painful D for over 5 years after 10 years of just in the morning D and not moving well I was pretty well homebound. The very strong meds I was on for my arthrits pain, the D, the fibro, the migraines and the fatigue left me with no energy and really did nothing for the pain. I was in such bad shape 6 months before I was diagnosed that my teenage daughter told me one morning that the family would understand if I committed suicide. Believe me I came closer than I would ever want to many times. When I started the diet I was just happy that the D stopped, the last thing in the world that I expected was for all the other problems I had to go into remission. About 6 months into the diet I caught myself RUNNING up the stairs, I had heard a cat cry and something fall and just took off up the stairs without thinking about it. My DD found me a few minutes later sobbing at the top of the stairs. I couldn't believe I did it. I then realized that I was not needing to walk next to walls anylonger and within another 6 months I didn't need canes even to walk across a parking lot or around my back yard. I still have some balance issues, I can't change focus quickly if I am walking down stairs for example and I have some problems with ladders and such but I don't need to grab a cart to aid my walking when I grocery shop anymore and I can even dance again without falling. It was a long and steady haul and my balance issues certainly didn't go away instantly but it takes time for nerves to regrow and it took a very long time for me to get as bad as I was.

[nora-n]

About the gene test first mentioned here, the result is DQ2 and DQ7.

Now, DQ2 IS the main celiac gene.

And, DQ7 is also slightly celiac.

It is very similar to DQ8 which is the other main celiac gene.

Open Original Shared Link

Here, about DQ9 being quite similar to DQ8 :

Open Original Shared Link

[Janeti]

ravenwoodglass,

you just made me cry...I hear you, I've been there. When I use to walk up and down the stairs, my heart used to beat out of my chest, and once I was at the top I had to wait and compose myself, catch my breath. Now I can be screaming at the kids as I am running up the stairs It's something that I think I will never believe, even though it happened to me. Years of the Drs telling me its all in my head. Sorry, it still makes me crazy...

[hathor]

About the gene test first mentioned here, the result is DQ2 and DQ7.

Now, DQ2 IS the main celiac gene.

And, DQ7 is also slightly celiac.

It is very similar to DQ8 which is the other main celiac gene.

Open Original Shared Link

Here, about DQ9 being quite similar to DQ8 :

Open Original Shared Link

What search did you perform to find these? I've tried before to find information on DQ1, but I only find a reference to one study (and not a complete abstract at that). Do you happen to have any links on this subject?

[ravenwoodglass]

ravenwoodglass,

you just made me cry...I hear you, I've been there. When I use to walk up and down the stairs, my heart used to beat out of my chest, and once I was at the top I had to wait and compose myself, catch my breath. Now I can be screaming at the kids as I am running up the stairs It's something that I think I will never believe, even though it happened to me. Years of the Drs telling me its all in my head. Sorry, it still makes me crazy...

I was always thankful for a solid handrail, my arms used to do most of the work pulling me up the stairs. It makes me crazy too and not in the way all those doctors thought for so many years. It still seems like a miracle to me. I feel almost as good about being able to dance as I do about being able to read again. I found sublingual B12 to be invaluable and even 5 years later I still take it. I am still hopeful my residual damage will eventually repair, but I am thankful for the great response I had and so thankful that I am pain free now almost all the time. Something I hadn't known since I was a very young child.

[nora-n]

Ithink I did some searches in www.pubmed.com or google or something.

On DQ1, just do a search on hadjivassiliou, in pubmed and then the net, like google. there are several articles about dq1 and hadjivassiliou is often one of the authors.

[gfpaperdoll]

Linda How are you doing? Did you get the answers you needed about food? I eat very plainly & do not buy any gluten free items. I shop mostly from the main stream groceries & just eat fresh foods, like pork roast, carrots with onions, baked sweet potatoes, broccoli, jicama, tomatoes that kind of stuff. I eat fruit & nuts for breakfast & maybe some boars head deli meat. I only drink water. I think it is important to eat Kale & cabbage...

I cook & freeze meals and extra meat for salads as I work so need lunches for the office & a lot of days no time to prep dinner. I usually cook one day on the weekend...

[Linda56]

Hi Doll,

I am trying to work out my diet. I guess I am going to have to limit to just a couple things and start from there. It seems like changing my diet to eat gluten free is making me sick also. I can't find anything that really is agreeing with me. I ate a sweet potato on Saturday and had terrible acid reflux and was throwing up. So I had to wait for all to calm down. I have been catching every thing the past couple months down with a virus for 3 weeks and had been feeling better for a couple weeks and now back dealing with a flu or cold. I am also having a strange feeling of my skin feeling like someone or something is lightly touching me. Like walking into a spider web. I am not sure what is going on. Thanks for letting me know what you eat.