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Hi, I am new to this forum.I was recently tested for Celiacs (of course at my own request).This after 19 years of "IBS" dx. At the beginning of the year when I broke out with DH,I thought I should check into the possibility of Celiacs. Well,long story short...after going gluten-free in April my symptoms have gotten 95% better. I was tested last week and my results were not what I expected...everything was negative.Although,my immunoglobulin A was 62 (referance range 81-463mg/dl). I also had genetic typing done as well.It went as follows:

HLA-DQB1 03(DQ7)

HLA-DQB1 05(DQ5)

HLA-DQ2 Negative

HLA-DQ8 Negative

Does anyone know what that means? I sure would appreciate any help I could get.

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I have no idea what that means but im sure someone will. I just wanted to ask were you did the genetic testing, i had thought only enterolab shows those other genes so im just curious who is now testing for all of the other genes.

paula

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ok i did some looking up on google and i think what it means is you are IgA deficient, so you could still have celiac. Do you have the numbers from the other test ran.

paula

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I have no idea what that means but im sure someone will. I just wanted to ask were you did the genetic testing, i had thought only enterolab shows those other genes so im just curious who is now testing for all of the other genes.

paula

I actually went through Quest Diagnostics,but I specifically asked for it.

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i also just went and re-read your first post, so you have been completely gluten free since april, if so that is why your test could be negative. You have to be consuming gluten to get an accurate test for weeks before the blood test is done.

paula

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Hi, I am new to this forum.I was recently tested for Celiacs (of course at my own request).This after 19 years of "IBS" dx. At the beginning of the year when I broke out with DH,I thought I should check into the possibility of Celiacs. Well,long story short...after going gluten-free in April my symptoms have gotten 95% better. I was tested last week and my results were not what I expected...everything was negative.Although,my immunoglobulin A was 62 (referance range 81-463mg/dl). I also had genetic typing done as well.It went as follows:

HLA-DQB1 03(DQ7)

HLA-DQB1 05(DQ5)

HLA-DQ2 Negative

HLA-DQ8 Negative

Does anyone know what that means? I sure would appreciate any help I could get.

Hello and glad that you have found us.

You mentioned that you went gluten free in April and then you were tested last week.

It is often recommended that before testing that you should stay on a gluten diet up until testing, because is can alter the results. Testing can rule Celiac in, but it cannot rule it out.

Since you felt 95% better on the gluten free diet, perhaps that may be your answer.

I did not have any genetic testing done, so I will leave that to others.

Again, welcome

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One more thing, did your drs say you have DH, like by biopsy, or do you just think it is Dh. If the drs said you have DH then you have celiac, there is no its ands or buts about it. I for one do not have the celiac gene but i have Dh, postive blood work and postive enterolab results.

paula

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Thanks so much for the welcome. I had a feeling the test would come back negative since I had been gluten-free. I was trying to add some gluten in for the last couple of weeks prior to the test,but it's so hard to go back now (physically).The negative result makes you second guess your own gut feeling though.

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No,I was not diagnosed with DH. The doctor I was going to at the time said it was "hives" and prescribed me prednisone(sp),antihistimines,steroids,etc. My husband(who is a paramedic) also gave me a shot of Benadryl.Nothing helped me,I was itching for 3 1/2 straight months.I went gluten-free and within several days I was relieved.My father also has the same thing and since he has been gluten-free for a few weeks now,he also has been relieved.

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The only thing that is strange is that you don't have the genes. From my understanding, you have to have the genes in order to rule it in. If you don't have the genes, you can rule it out. You may have a gluten intolerance, but not Celiac disease.

Kassandra

Again, all my opinion!

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The only thing that is strange is that you don't have the genes. From my understanding, you have to have the genes in order to rule it in. If you don't have the genes, you can rule it out. You may have a gluten intolerance, but not Celiac disease.

Kassandra

Again, all my opinion!

At the bottom of the gene portion of my blood test done by LabCorp there is the following statement:

"Greater than 95% of all Celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease).

I take this to mean a small percentage of people could develop Celiac with neither gene. I have also heard there are probably those with either or both genes who will never develop active Celiac.

I guess the bottom line is this research continues to be a work in progress.

Tom

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At the bottom of the gene portion of my blood test done by LabCorp there is the following statement:

"Greater than 95% of all Celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease).

I take this to mean a small percentage of people could develop Celiac with neither gene. I have also heard there are probably those with either or both genes who will never develop active Celiac.

I guess the bottom line is this research continues to be a work in progress.

Tom

Exactly, there is a small percentage of us that do not carry the gene but yet have celiac disease. I am one of them. I think there is still alot to be figured out about this disease and in time they will find other genes that are connected to celiac disease. Just like there are many people that have the genes that will never get the disease cause nothing will trigger it.

But we can not rely on the gene alone to say someone has the disease or not.

paula

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I have the same genes that you do. While neither one is considered a celiac gene what I've found from all the reading I've done is that the 7 can act like one and the 5 is more likely to be associated with the neurological related syptoms. My brother does have one of the actual celiac genes, but I've found that my symptoms actually tend to be worse than his which is interesting. You would think it would be the other way around.

I had a celiac test done almost 4 years ago and it was negative, but I tested positive through Enterolab so started the gluten free diet and the change has been amazing. I can do more than I've been able to in years. I'm curious to know what kind of symptoms you had besides the DH. Since we have the same genes it may be interesting to compare :o)

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Well gee,do you have a few minutes...symptoms include the itching,all the "tummy troubles",migraines(with the aura),fatigue,blood clotting trouble,psoriasis and the latest losing my hair.I go to see a new GI dr this Weds. hopefully he will be knowledgable in this disease.I need to know 100% if it's celiacs because if it isn't than I need to figure out what it is and how I can fix it.

What symptoms do you have?

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Well gee,do you have a few minutes...symptoms include the itching,all the "tummy troubles",migraines(with the aura),fatigue,blood clotting trouble,psoriasis and the latest losing my hair.I go to see a new GI dr this Weds. hopefully he will be knowledgable in this disease.I need to know 100% if it's celiacs because if it isn't than I need to figure out what it is and how I can fix it.

What symptoms do you have?

Your symptoms sound a lot like mine, although I had ataxia and arthritis thrown in. One thing I found was that to resolve the neuro and skin related troubles, including my hairloss, I had to be very, very strict with the diet. I also had to eliminate gluten from all toiletries and shampoos and such. It is hard at first to be as gluten free as we need to be for optimal healing. For many it requires giving up processed foods for a bit, even the smallest amount of CC will reactivate the autoimmune system which for me at least is the reason for the hair loss. Even after 5 years gluten-free hair loss is a predominent feature of a glutening along with migraine auras, and rarely the associated pain.

It takes a long time for us to get as damaged as they make us get in this country before diagnosis. And it takes a while to heal. They do not know all the genes yet for celiac, or for gluten intolerance. IMHO the best way to diagnose is dietary, and being gluten free will not mask other disorders or cause any problems with diagnosis in anything other than celaic itself. If you exclude gluten strictly for a month or so (this includes checking all meds OTC and script), get some relief and then become sick within a week of adding it back in that is diagnostic in itself. That was how I was finally diagnosed by a savvy and elderly allergist after a lifetime of gluten related problems and a year or two knocking at deaths door.

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I just looked at my shampoo and gel and sure enough wheat germ and wheat protein was listed on there.Didn't even think about that! Thank you. Another thing that just came to me is I was born missing my left hand and I just read that congenital malformations can occur from parents who are celiac.My dad has suffered what now I believe to be DH for years,just in the last couple weeks he has been gluten-free.It's so funny how it all seems to be coming together now.

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I just looked at my shampoo and gel and sure enough wheat germ and wheat protein was listed on there.Didn't even think about that! Thank you. Another thing that just came to me is I was born missing my left hand and I just read that congenital malformations can occur from parents who are celiac.My dad has suffered what now I believe to be DH for years,just in the last couple weeks he has been gluten-free.It's so funny how it all seems to be coming together now.

I had never heard the link with congenital malformations. Do you perhaps have a link to the article? I would imagine it is a rare occurance as I have never heard anyone speak of it on the boards. But then I have never brought up the ones I was born with other than to mention the surgery when talking of triggers and excaberations. In my family I was the only one with congenital malformations, even both my celiac kids were spared that sort of thing. My malformations were in my lower legs and feet and were able to be corrected surgically when I was 10.

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I found the link health.yahoo.com/topic/digestive/other/article/niddk/Digestive_NIDDK_dig_niddk_Celiac_Disease

very interesting.It's funny to see that in Italy it is so prevalent that they automatically test you at 6 yo. I am also Italian 4'10" .I guess that explains my short stature.

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Hi Fitgirlie,

Hope you are making some progress in your diagnosis/plan for recovery. Just wanted to add that I also have the DQ7 gene, which it looks like new research is turning up as a celiac gene too. Enterolab gave me my results this way:

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

A helpful responder to another thread sent me this:

Here something about DQ7 being a celiac gene too:

http://www.clinchem.org/cgi/content/full/44/8/1755

I can't be of great help to you in the "official results" area because I have been avoiding starches for years. I thought they made me "sluggish". Also dairy because I thought I was lactose intolerant. That's as close as I ever came to recognizing the reason behind all my lousy symptoms. So no positive biopsy or bloodwork. But I'm certain I'm celiac-- the Enterolab results showed a pretty seriously elevated fecal fat. My intestines were damaged for sure by the amount of gluten and casein I was eating (as if I couldn't tell by the fact my face has been gaunt and hollow like a malnutrition patient for five years!!). Gross, but I didn't even know poo was not supposed to float until I learned about celiac three months ago! And the first time in my life it DIDN'T float was two weeks after I stopped eating gluten.

But I thought it was interesting you and other people with DQ7 mentioned the migraines with aura and the itching. Was yours itching on your lower legs mostly, with no visible "hives"? I got diagnosed with hives with that kind of itching too. The antihistamines didn't help though. I suffered with it for two years when I lived in England, and then it finally went away (I used to eat the old-style giant shredded wheat biscuits while I was there, ack! No one ever suggested that was why I was so miserable!) I get brain fog, muscle twitches in my arms, sides and eyelids, and tingling fingers after bad gluten attacks. I have been tired and had trouble reading my way through even one whole book for years.

All this has gotten soooo much better since I stopped gluten and casein. And the acne and blackheads I've had for twenty years is almost totally gone (from my face AND body). If that's not results, I don't know what is.

Sorry for the long post. Hope you're doing better. Please write with anything you want to compare or ask. It's good to feel you have a "genetic relative" to compare symptoms and solutions sometimes!

Miriam

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Hi Fitgirlie,

Hope you are making some progress in your diagnosis/plan for recovery. Just wanted to add that I also have the DQ7 gene, which it looks like new research is turning up as a celiac gene too. Enterolab gave me my results this way:

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

A helpful responder to another thread sent me this:

Here something about DQ7 being a celiac gene too:

http://www.clinchem.org/cgi/content/full/44/8/1755

I can't be of great help to you in the "official results" area because I have been avoiding starches for years. I thought they made me "sluggish". Also dairy because I thought I was lactose intolerant. That's as close as I ever came to recognizing the reason behind all my lousy symptoms. So no positive biopsy or bloodwork. But I'm certain I'm celiac-- the Enterolab results showed a pretty seriously elevated fecal fat. My intestines were damaged for sure by the amount of gluten and casein I was eating (as if I couldn't tell by the fact my face has been gaunt and hollow like a malnutrition patient for five years!!). Gross, but I didn't even know poo was not supposed to float until I learned about celiac three months ago! And the first time in my life it DIDN'T float was two weeks after I stopped eating gluten.

But I thought it was interesting you and other people with DQ7 mentioned the migraines with aura and the itching. Was yours itching on your lower legs mostly, with no visible "hives"? I got diagnosed with hives with that kind of itching too. The antihistamines didn't help though. I suffered with it for two years when I lived in England, and then it finally went away (I used to eat the old-style giant shredded wheat biscuits while I was there, ack! No one ever suggested that was why I was so miserable!) I get brain fog, muscle twitches in my arms, sides and eyelids, and tingling fingers after bad gluten attacks. I have been tired and had trouble reading my way through even one whole book for years.

All this has gotten soooo much better since I stopped gluten and casein. And the acne and blackheads I've had for twenty years is almost totally gone (from my face AND body). If that's not results, I don't know what is.

Sorry for the long post. Hope you're doing better. Please write with anything you want to compare or ask. It's good to feel you have a "genetic relative" to compare symptoms and solutions sometimes!

Miriam

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When you mentioned "brain fog" that was a relief to me. I am actually going to UCSD next week to a Celiac Center there. I have been eating gluten for 2 days again after being off of it for 6 months. I have felt as if I am drunk or in a daze. I am glad to hear that is a "normal" reaction. I tried explaining this reaction to my husband and I think he thought I was nuts. I have also felt itchy,no visible hives like earlier in the year,but itchy and headachy.

I am glad you sent me the info on the DQ7 gene,I will take a copy of that and bring it with me to my appt. My normail GI dr. is clueless about this disease that is why I am going to San Diego next week.I hope I can get some straight answers.

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