He's Back!

[JerryK]

So I got my gene test back from Enterolab HLA-DQ 3,1 (Subtype 7,5) and here is what Dr. Fine

has to say:

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a 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 the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

I'm taking it as postitive that I don't have the Celiac gene, but wondering what does it all really mean?

I've been gluten-free for several weeks now and all of my gastro intestinal symptoms have gone away. If I'm not Celiac, then why do I get gastro symptoms and why do they go away when I stop eating gluten?

Does this give me license to "cheat" when I feel like it? Does this mean that gluten doesn't damage me? (other than making me sick, which I guess is damage). Any enlightened thinking out there?

BTW the cruise was great. It was EASY being gluten-free on the ship because everything is cooked on board.

Just made careful choices...got a little sick one day and that was it.

jerry

[jayhawkmom]

I've been gluten-free for several weeks now and all of my gastro intestinal symptoms have gone away. If I'm not Celiac, then why do I get gastro symptoms and why do they go away when I stop eating gluten?

Hi Jerry! I'm glad you had a great time on your cruise.

Here are my horribly uninformed and unprofessional opinions, for what they are worth. Your IgA was high, indicating that your body is making antibodies to gliadin. That means that for whatever reason, your body is offended by the gliadin protein, and it deems it to be an invader. This means you are intolerant to gluten, which you already know. It means that by avoiding gluten, you avoid the gliadin protein, which means you avoid the stomach aches and other ugly side effects of ingesting this protein.

Is it a license to cheat? Sure... if you don't mind feeling like _ _ _ _ after you eat it. To me, it's not worth it... and from what I've read from your posts, doesn't sound like it's much worth it to you either.

If I were in your shoes (which... in a sense, I am) I'd smile and say "Phew! I don't have Celiac... but gosh... I hate the way I feel when I consume gluten, so I think I'll just stick to this diet since it works!"

Whatever you do, I wish you the best. =)

[Rachel--24]

If I were in your shoes (which... in a sense, I am) I'd smile and say "Phew! I don't have Celiac... but gosh... I hate the way I feel when I consume gluten, so I think I'll just stick to this diet since it works!"

I'll agree with evry word written here....along with everything else written in Jayhawkmoms post.

I would stick to the diet just the same....(which is what I've been doing for almost 2 years now).

[CarlaB]

I agree with the other posters.

I find that the longer I feel better from being gluten-free, the more I can't stand the feeling when I get glutened. I'm now used to my stomach feeling good, and it bugs me even worse now when it gets bad.

[AndreaB]

In addition to what the others said just because you don't have celiac doesn't mean that the damage can't occur other places in your body. Like neurologically, although damage really occurs or it's just a response to the gliadin I'm not sure. It seems gluten is behind a lot of different illnesses/diseases although I'm not one to believe it's the sole problem of them. Dangerous Grains lists 150 different diseases (some are subsets) that respond favorably to a gluten free diet.

[ArtGirl]

I am *only* gluten intolerant, also.

My response is - thank goodness I don't have celiac and don't have the intestinal damage which leads to cancer and ataxia and all those other really bad things (If I HAD been celiac, but this time - 40 years later - I surely would be dead of cancer or in a wheelchair).

Is this a license to cheat? - I look at it this way - I don't cheat because I don't want to feel so sick as I did, but if I do get accidentally glutened - then I'm glad that it's not going to do any damage.

I do have a couple other autoimmune issues (hypothyoid and possibly Sjogren's) and I think there are others who are *only* intolerant who have developed other health problems, as well. Being exposed to gluten will cause other problems by continually compromising one's immune system. How much cheating could be considered "safe"? I don't know, but am not going to experiment on this body!

[JerryK]

Thanks to all for your responses. I consider myself to be reasonably intelligent, but understanding

the genetics of Gluten Sensitivity has me completely stumped.

I don't know what this means....I don't understand why he's listed a Serologic equivalence of 3,1.

I see 0301 and 0501 which looks to me like 3,1 and 5,1...I just don't get it.

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

[happygirl]

Jerry:

The best explanation for the gene stuff that I have found is on wikipedia:

Note on DQ Sertoype Names in Relationship with Allele Names

DQ sertoypes are usually a recognition of Beta chain isoform groups For example, DQ2 = alleles that start with DQB1*02 (*0201, *0202, and *0203).

DQ2 is encoded by alleles that start with DQB1*02

DQ4 is encoded by alleles that start with DQB1*04

There are two exceptions worth noting:

DQ1 is 'split' into DQ5 and DQ6, in this case the DQB1 alleles start with

DQ5 encoded by alleles that start with DQB1*05

DQ6 encoded by alleles that start with DQB1*06

DQ3 is split into DQ7, DQ8, and DQ9, but allele retain DQB1*03.

DQ7 = DQB1*0301 (or very similar alleles)

DQ8 = DQB1*0302 (or very similar alleles)

DQ9 = DQB1*0303 (or very similar alleles)

So, as you can see by the italics, HLA DQ8 (which is a Celiac gene), is actually DQ3 split into DQB1*0302. (hence why the differentiation between HLA DQ3, not subtype 8.

[darlindeb25]

I have no idea what the numbers mean, I do however know that you do react to gluten. I also know that I do not feel that the medical society knows enough about celiac disease to tell you whether or not you could develop it down the road. I think any person that can not tolerate gluten will eventually have celiac disease if they do not go gluten free. Why take the chance?

I'm glad you had a good time on your cruise, but I think you deserved another week of vacation.

[Jestgar]

Jerry, check out this page from Enterolab.

Open Original Shared Link

Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue?

Short answer:

0yxx, where y is 2 for DQ2, 3 for any subtype of DQ3, 4 for DQ4, 5 for DQ5, or 6 for DQ6

DQ7, DQ8, and DQ9 are subtypes of DQ3

DQ5 or DQ6 are subtypes of DQ1

so 03** is DQ3, you happen to have subtype 7 of DQ3

05** is DQ5. There are no other subtypes so you have subtype 5 BUT DQ5 is the same as DQ1 in how it works, so you have the serological (functional) equivalent of DQ1

Don't quote me on this. HLA nomenclature is the absolute worst.

[CMCM]

Jerry....Go to this page and read....especially pay attention to the last couple of paragraphs.

Open Original Shared Link

[aikiducky]

Maybe someone else can confirm because I'm going from memory, but isn't DQ1 the one that is often connected with neurological problems? Because from your description of symptoms I was almost sure that's the gene you would have! It's not recognised as one of the main celiac genes, but (my opinion) that could well be because the damage is happening elsewhere in the body, and so the current celiac testing won't catch it.

I would, again based on your symptoms, absolutely take the diet seriously. Intestinal damage is one thing, but personally I think neurological damage is even scarier...plus I've found from personal experience that a very small amount of gluten or dairy will send me right back into a depression again. It's just not worth it.

Pauliina

[ArtGirl]

Intestinal damage is one thing, but personally I think neurological damage is even scarier...plus I've found from personal experience that a very small amount of gluten or dairy will send me right back into a depression again. It's just not worth it.

Ditto. Now that I'm not depressed, anxious or irritable all the time - the thought of returning to that dark tunnel would be enough by itself to keep me gluten-free for life.

It's been six months now gluten-free, and three months corn-free. I'm a much happier person than I've been for most of my adult life - sure wish I'd known about all this 30 years ago!

[JerryK]

Thanks guys, it's starting to make a little sense. Tough getting past the neurological damage

My wife and I talked about the genetic test last night...she said "I know you sort of wanted to know you had celiac, because then you would at least have a concrete answer".

I told her I was glad it wasn't celiac, and I thought I had my answer. The stool test, gene test and dietary response indicated gluten sensitivity. The blood test and gene test effectively ruled out true celiac. I suppose testing and diagnostic critera will get better as time goes on, but for right now, this is as much as I'm going to know.

Thanks for your help. Not sure where I go from here. Jerry

[aikiducky]

Thanks for your help. Not sure where I go from here. Jerry

You'll go on to getting better and just plain feeling good!

Pauliina

the optimist

[holiday16]

So I got my gene test back from Enterolab HLA-DQ 3,1 (Subtype 7,5) and here is what Dr. Fine

has to say:

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a 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 the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

I'm taking it as postitive that I don't have the Celiac gene, but wondering what does it all really mean?

I've been gluten-free for several weeks now and all of my gastro intestinal symptoms have gone away. If I'm not Celiac, then why do I get gastro symptoms and why do they go away when I stop eating gluten?

Does this give me license to "cheat" when I feel like it? Does this mean that gluten doesn't damage me? (other than making me sick, which I guess is damage). Any enlightened thinking out there?

BTW the cruise was great. It was EASY being gluten-free on the ship because everything is cooked on board.

Just made careful choices...got a little sick one day and that was it.

jerry

I could have the same genes that you do. I did not have the gene test done (wish I had), but my parents both had it done. My dad has 7,7 and my mother has 8 and 5 (0501). My brother also had it done and his were 8,7. So, I know since my dad is a double 7 at least one of my genes is a 7. What I don't know is do I have an 8 or a 5. My brother who has the 8 has more gastro symptoms and I have more neurological which makes me wonder if I have the 5, but I don't know. I've considered asking my Dr. for a gene test through him which should be 100% covered by insurance which would just tell me if I have a 2 or 8, but doesn't test for all the genes.

I've been following some of your posts and I think maybe my story might help a bit, but I warn you it's quite long! I was tested through Enterolab late last year. My Fecal Antigliadin IgA was only an 11. I had the test done because the NP I consulted with suggested it. After we talked I really didn't expect it to come back positive at all. I had already had a full celiac panel done on her recommendation in March of 2003 which was def. negative. That evening I had a bunch of pretzels and my stomach ended up hurting so much I had trouble just moving. It hurt for the next 3 days. I began to avoid wheat and noticed that my stomach hurt if I had any. Also noticed I would shake more. By the time my results came back I was already gluten free based on the symptoms.

I was surprised the number was so low though because I had been sick ever since I had my youngest daughter who will be 8 in May. I had been seeing a Dr. for the past 7 years who I am grateful took me seriously. He tested for so many things I could not even begin to name them all. I had a CT scan, MRI, bone scan and lots of bloodwork. I was referred to an allergist, nephrologist and rheumatologist. Nothing showed up on anything. I became so sick I could not get out of bed at times and I had so much trouble walking I came very close to using a cane because my dh was so tired of me hanging on him. In 2003 I was diagnosed by the NP w/ a really bad parasite. It's one that most people can fight off and is considered harmless, but for some reason I couldn't. She treated me for it and I felt so much better. In retrospect I think it was because she gave me different things to take to heal the intestinal tract from the damage it caused. I still had alot of symptoms, but I could function much better.

That lasted for a while and then I started having problems again. I had very low vitamin D levels which were treated, but I still was having problems. That combined w/ the parasite is what made the NP suspect gluten intolerance. She did not think I had celiac just gluten intolerance! You do not have to be a true celiac to have digestive problems. I could not believe how much my stomach had been hurting for so many years, but I had just gotten used to it. Being gluten free so many things have resolved themselves. After about 3 weeks on the diet I stopped shaking all the time. My mind began to clear, I could drive again without being so nervous (because my reaction time was finally decent again), my coordination is much better, my fine motor skills are coming back, my muscles aren't fatigued all the time, headaches went away, my joints don't hurt anymore, I don't have trouble speaking (I was starting to slur words), my chemical sensitivity is much better than it used to be and I could go on and on. I've been gluten free for about 4 months now.

I have not cheated and the only times I've had gluten is on accident from cross contamination at restaurants, but when that happens it all comes back. Had a small exposure this past Friday and it's disturbing to see the shaking come back and when I try to sign my name it becomes a scribble at the end because I just can't control it.

My dad who has the double 7 did the full test and his Fecal Antigliadin IgA was only 14 and his TTG was 14. He started the gluten free diet recently and I noticed he seems more alert, has better reaction time etc. May not seem like a big deal, but for the past couple years he had been acting more and more like my grandfather who by the time he died was having really bad memory problems which we now think were related to gluten. My dad's peripheral neuropathy has also improved and he can now feel the soles of his feet. This was another thing my grandfather also had and for the last few years he was very depressed as well.

My mother who is the one with the celiac gene scored a 9 which is borderline negative so is trying the gluten free diet for a while to see if it makes a difference. She has been starting to have muscle weakness and wants to see if this will help. That was the first big symptom I had when my problems started. We're pretty sure she got the gene from her mother who was very sick for years. She never had classic celiac symptoms, but became very ill after having her last child and I thought of her so often when the same thing happened to me. At the time the Dr. suspected low Serotonin which they found can be hereditary and triggered by pregnancy. Personally, looking back I think the low Serotonin was gluten related.

My youngest daughter has never been tested, but we found that when I started cooking gluten free her stomach stopped hurting so much. We had been to the Drs. for it a couple times and they diagnosed constipation, but nothing helped it. We put her on a gluten free diet and for the first time in her life she is regular and says her stomach does not hurt. She forgot and ate a twinkie at school last week. She was in so much pain she cried all night and it took about a week before she was regular again.

My Dr. (who is not in the same office as the NP) accepts the diagnosis from enterolab based on the fact that my symptoms improved. He also agrees my daughter has it as well even though she has not had any testing done. Everyone is in agreement the gluten free diet has been proof enough.

I'm hoping that sharing this with you will help because I know you've been questioning your diagnosis. Personally, I feel that if gluten bothers you then don't consume it. As much as I've noticed an improvement I've also noticed that I'm not 100% and I sometimes wonder if I ever will be and is some of the damage permanent? Knowing that most of it was neurological and that is generally more difficult to recover from I'm grateful that so much of it was able to be reversed on a gluten free diet and I feel very fortunate. My symptoms started out mild, but progressed to be pretty severe over the years. My TTg through enterolab and the one I had in 2003 through bloodwork were both negative, but obviously even though I had no "proof" damage was taking place by consuming gluten. I have to wonder if I had just found out sooner and gone gluten free what difference would that have made?

[msutherlin]

Hi Jerry, I wondered where you had been and how you were. This is the circumstances in which I now find myself. After having a colonoscopy, an upper endoscopy with biopsy and the most horrible test, enteroclysis, I have been diagnosed by my gastro as being gluten intolerant. I am ok with this. This means I don't have damage if I have an accident. But, do I want to knowingly eat gluten? I have felt so horrible for so long and am now enjoying feeling normal. There is no way I want to endanger that. The only good thing is, I don't feel I have to be so worried when I go out to eat. I know to make good choices and do the best I can, but if I do get glutened, it will not cause damage but I might feel bad for just a bit. But I will by no means go out and eat something on purpose. It has been so nice these last couple weeks to start to feel normal again and each day gets better and easier. Gluten free is how I'm going to stay. I just don't like being sick or worrying that I might have to start buying depends at age 47.

[CMCM]

Jerry, LISTEN UP! Be glad you don't have the celiac gene, BUT.....don't consider "merely" haviing gluten sensitivity genes to be a big nothing. This is the PROBLEM with the state of things right now....everyone is focused on the worst subset of gluten sensitivity, celiac disease, and ignoring the rest of it. You're fortunate to to have to worry about celiac disease, but the fact remains that your gluten sensitivity has been active, giving you problems. And it can give you more problems, too, if you ignore it.

Here are some examples: My mom has 2 celiac genes. I got tested and I have one of her celiac genes, and a gluten sensitivity gene from my dad. We're (the family) still trying to figure out my dad's 2nd gene thru process of elimination testing. But consider this: my dad got bladder cancer, later prostate cancer by age 60. My two brothers were diagnosed with prostate cancer at 53 amd 54, which is way too young. They of course each have a celiac gene, and most likely a gluten sensitivity gene (I would be surprised if my dad, who died in 1989, had a celliac gene too). My brothers, also my sister, claim they have no symptoms. But I DID have symptoms, so there! There is a documented connection with gluten and prostate cancer, so we have to wonder about this now in our family.

Remember that all celiac disease STARTS as gluten sensitivity and may continue in that mode for many years, even well into middle age. With the celiac gene and a trigger event, the gluten sensitivity which went on for years and years sometimes suddenly turns to celiac disease. You don't have to worry about that, but eating gluten can do lots and lots of damage to you as well. Don't dismiss it or treat it lightly.

THE HUMAN BODY WAS NOT DESIGNED TO PROCESS GLUTEN!!!!

[darlindeb25]

I just received my copy of a new book, The Gluten Connection. This book is written by a doctor, Dr. Shari Lieberman, PhD, CNS, FACN. In this book it is stated:

Dr. Lieberman's book raises public awareness about this terrible condition that afflicts many people--some genetically predisposed, some not. One person in the latter category (not genetically predisposed) is my own son Step, who developed acquired celiac disease after being exposed to toxic molds. This was written by Dr. Stephen T. Sinatra, MD, FACC, FACN, CNS who did the foreword for this book.

I have always believed this. I do not think you necessarily need the genes to have this disease. Having the genes simply means you more than likely will be celiac, yet that does not mean you can not acquire celiac in other ways. As the book says, and just as I have always believed, if you are gluten sensitive and ignore that fact, continue eating gluten, you will eventually have full blown celiac disease.

So Jerry, IMHO, you eating gluten is the same as living with a ticking time bomb. I do think that a lot of the people who do have immediate relieve from going gluten free are the ones who do not have as much damage done to their systems. I was sick for over 25 years and no one knew why. I truly do not believe that my system will ever heal completely, I think I will always malabsorb. I have been gluten-free for over 5 1/2 yrs now and I still have so many issues.

Just be thankful you do not have full blown celiac disease and thank God you found it soon enough to prevent further damage.

I wish you continued good health now.

[JerryK]

Hi Jerry, I wondered where you had been and how you were. This is the circumstances in which I now find myself. After having a colonoscopy, an upper endoscopy with biopsy and the most horrible test, enteroclysis, I have been diagnosed by my gastro as being gluten intolerant. I am ok with this. This means I don't have damage if I have an accident. But, do I want to knowingly eat gluten? I have felt so horrible for so long and am now enjoying feeling normal. There is no way I want to endanger that. The only good thing is, I don't feel I have to be so worried when I go out to eat. I know to make good choices and do the best I can, but if I do get glutened, it will not cause damage but I might feel bad for just a bit. But I will by no means go out and eat something on purpose. It has been so nice these last couple weeks to start to feel normal again and each day gets better and easier. Gluten free is how I'm going to stay. I just don't like being sick or worrying that I might have to start buying depends at age 47.

Ya, well I celebrated my Celiac negative status by having a cookie. I've felt like crap for a day and a half. It's not worth it to eat gluten...just not worth it.