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Genetic Test

jknnej

By jknnej
in Coping with Celiac Disease

Recommended Posts

daffadilly Apprentice
daffadilly
Posted

The personal experience with my family is that non celiac, if you will, DQ1 does cause automimmune illnesses just like "celiac".

Really the only debate here is that "The Doctors" have a narrow definition of what is celiac which is you have villi damage as proven thru biopsy. & the doctors further believe that if you do have villi damage that you have either one or two genes, DQ2 &/or DQ8.

I am a double DQ1

My mother had: mental issues, cigarette addiction, food addiction, diabetes, ate ice her whole life (anemic), slept a lot & could sleep thru a tornado, had heart problems, arthritis, gas (she always said you get a lot of gas when you get older ie over 18 LOL), depression, mean temper

at the end of her life, heightened food allergies that required many trips to the ER (she never believed a food could make you sick, hello-I had them my whole life & it was always "well you can eat just a little bit of it"), cancer of the intestines/stomach

My sister has: food addiction, rheumatoid arthritis (on disability), seizures, irrational temper, depression, IBS

My grandmother - the red head, watched her diet, stayed slim, had heart problems, severe migraines, and died of cancer.

I consider cancer, arthritis,& diabetes auto-immune illnesses. & I have the same heart problems that surface whenever I am glutened or eat potatoes. I react to the smallest little bit of gluten.

It is getting late & my brain is slowing, but I think I am right on this: gluten sensitivity does present with the same antibodies as celiac, that is why they cannot say if you are gluten sensitive or celiac from the blood test. Wheat allergy is different. Now I remember my experience: My double DQ1 grandson had the blood test & tested positive.

So there are three conditions: Celiac, gluten sensitive, and wheat allergy

The information on all three conditions is posted somewhere - which escapes my DQ1 brain at the moment.

So to sum it up, the medical community can say that you have to meet certain criteria to be dx celiac but try telling that to someone that is suffering & knows that they cannot eat gluten. & we all feel so sorry for the ones being mis-led (all for the sake of science?) The only thing about Celiac vs gluten sensitive is that it is just confusing to the new people still just starting the learning curve, and it gives some people an out as to why they can eat gluten & continue to slowly kill themselves. While really there is no difference.

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mamaw Community Regular
mamaw
Posted

I'm glad someone put this in a simple form. Of course I still have ????, call it brain fog as I can't seem to hold onto thoughts lately...Here is how my genetic testing came back:

DQ2 (DQA1 0501/0505,DQB1 02XX) postive

DQ8 (DQA1 03XX, DQB1 0302) negative

Now I know I have the DQ2 but what does the rest mean if anything? I had an endo & a colonoscopy done , it came back negative but I had been off wheat & gluten for a few weeks. I didn't know at the time several years ago that I should have continued to eat the stuff. When I told the doctor he said it doesn't matter. At the time I was so sick I just wanted answers fast. Now of course I know better so I fought my insurance until they decided to pay for the DNA test. My daughter & youngest grandson arre celiac, the other grandson is like me DQ2.

thanks for helping me sort this out. The doctor told me my results mean nothing and I can eat what I like, which by the way isn't wheat & gluten. I feel so much better with out it. When I ended up in the hospital a few months back I told them I didn't eat that they said the doctors made no report about it . I think they thouight I was alittle idot or crazy. Anyway I said it is my choice & don't give me anything with it in or I would sue them. Well they were very careful, thank goodness....

thanks again

mamaw

oceangirl Collaborator
oceangirl
Posted
I'm glad someone put this in a simple form. Of course I still have ????, call it brain fog as I can't seem to hold onto thoughts lately...Here is how my genetic testing came back:

DQ2 (DQA1 0501/0505,DQB1 02XX) postive

DQ8 (DQA1 03XX, DQB1 0302) negative

Now I know I have the DQ2 but what does the rest mean if anything? I had an endo & a colonoscopy done , it came back negative but I had been off wheat & gluten for a few weeks. I didn't know at the time several years ago that I should have continued to eat the stuff. When I told the doctor he said it doesn't matter. At the time I was so sick I just wanted answers fast. Now of course I know better so I fought my insurance until they decided to pay for the DNA test. My daughter & youngest grandson arre celiac, the other grandson is like me DQ2.

thanks for helping me sort this out. The doctor told me my results mean nothing and I can eat what I like, which by the way isn't wheat & gluten. I feel so much better with out it. When I ended up in the hospital a few months back I told them I didn't eat that they said the doctors made no report about it . I think they thouight I was alittle idot or crazy. Anyway I said it is my choice & don't give me anything with it in or I would sue them. Well they were very careful, thank goodness....

thanks again

I like your strategy- give me any gluten and I will sue you. And I am NOT a litigious person, in fact hate that aspect of our society and what it's done to medicine... I have two DQ1 genes; there is NO QUESTION in my mind or body that I react hideously to gluten! Everyone here is trying to reassure you that there is not enough understood by standard medical practice regarding the "gluten issue". Until more research is widely accepted we are a little bit on our own. You must trust your body. You must not put all your faith in what is "known" in medical science. The "knowns" keep changing anyway- a cautionary tale for us all. Folk medicine may well be the way of the future. I don't need medical "proof" to know my mother is a true healer; I don't need medical "proof" to know acupuncture works. I just need me. Feel better. Trust yourself.

lisa

mamaw

Okay, that was weird- first time my message got mixed up with someone else's. Hope you can sort it out.

lisa

Okay, that was weird- first time my message got mixed up with someone else's. Hope you can sort it out.

lisa

My response starts with "I like your strategy..."

lisa

heli Newbie
heli
Posted

mamaw - well, I don't know if you will ever get this. I am having so much trouble following links that were previously posted but here goes:

DQA1 is the alpha chain on the gene and is not currently considered as part of the gene profile for determining celiac disease.

DQB1 02xx means that the beta chain (as opposed to the alpha chain) carries the DQ2 and it is furter reported as 02xx becuase it has no subtype, just DQ2 positive. You carry one of the main genes that predisposes a person to celiac disease (flattening of the villi).

On the second line DQB1 0302 refers to DQ3 (and has been further designated as subtype 02 but this does not mean DQ2 on this gene). According to Dr Find DQ3 can act almost exactly like DQ8 and strongly predisposes a person to gluten intolerance.

Remember DQ1 has subtypes DQ5 and DQ6

DQ2 has no subtype

DQ3 has subtypes DQ7, DQ8, and DQ9

DQ4 has no subtype

So, if you were getting a very simple report of the 2 genes it would be DQ2 and DQ3.

Did your doctor say you could eat gluten? That is incorrect. Even if your endoscopy did not report flat villi, why would you eat gluten to cause damage that would flaten the villi? You have symptoms and you have the gene, I would avoid gluten like the plague!

jknnej Collaborator
jknnej
Posted
  • Author

Ok, Heli I am so confused...according to my dr. the tests were all negative.

Two were totally negative and I don't know what DBQ1 means next to the HLA.

as for the next line, DBQ (DQ) I have no clue what this means, either. I just know that my GI dr says it is all negative and that I can eat gluten if I so desire and see how I feel.

You don't interpret this as negative? Tell me why exactly..i posted my results...they're on the second page of this thread....help!

  • 6 months later...
givingthanx Newbie
givingthanx
Posted

Hi. I just got my gene test results back. I'm double HLA-DQ1.

Check out this web page:

Open Original Shared Link

Specifically, check out the section titled "Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue?"

According to information available in that section (about 3/4 of the way down), celiac disease is caused by DQ2 90% of the time; it's caused by DQ8 9% of the time; and it's caused by DQ1 or DQ3 1% or less of the time.

So apparently, it is possible to have celiac disease from DQ1 and DQ3.

As for the difference between celiac and gluten sensitivity -

It appears the only difference is that celiac involves villous atrophy of the small intestine, and non-celiac gluten sensitivity does not. Apparently (from the web page I already gave you), there can even be microscopic villous atrophy (whatever that means), but it would be gluten sensitivity instead of celiac. I guess that means there has to be significant destruction of villi for it to be celiac. There are all kinds of other damage that can be caused by non-celiac gluten sensitivity, including organ damage and neurological problems. That's just what I gather from my reading.

Mary

CMCM Rising Star
CMCM
Posted

This is the part that drives me nuts....to find out exactly what the difference is between celiac disease and gluten sensitivity. There actually doesn't appear to be a huge difference with the one exception of the fact that with active celiac, villous atrophy occurs and with gluten sensitivty it doesn't.

From the latest reading I'm doing, I've understood these things:

1) All celiac disease STARTS as gluten sensitivity

2) Given a predisposing gene AND a trigger at some point in your life, your gluten sensitivity can worsen into active celiac disease

3) Gluten sensitivity can cause many of not most of the same damage as active celiac disease, except for the villi damage. Gluten sensitivity can make you very very sick in dozens and dozens of ways.

4) Gluten sensitivity is totally under the radar with the medical profession. All they know about (minimally) or look for is celiac disease. They know LITTLE TO NOTHING about gluten sensitivity and what it can do. Since they don't know about it, they think it's not important.

5) Celiac disease is the tip of the iceberg. Gluten sensitivity is the huge mass UNDER the water, where you can't see it. It has been suggested that up to 80% of Americans carry the gluten sensitivity genes, and a great many of these people have symptoms ranging from barely noticeable to major.

6) Gluten sensitivty that is untreated (i.e. no avoidance of gluten) can indeed do major damage to organis and tissues.

7) Gluten senstivity, especially with observed symptoms which go away on a gluten free diet, should never be dismissed, minimized or ignored. You are poisoning yourself if you continue to eat gluten!!

These are just my own thoughts based on a lot of reading. It's astonishing how many of us are affected by gluten yet relatively little is known or discussed about it. The medical profession is the U.S. is so far behind the curve on this, it's just astounding. This is why we have to be our own advocates, our own detectives in this. There's a lot of information floating around out there, but it's not organized for the most part. Since you can't give a drug for this, and since a doctor's knowledge of diseases and "cures" seems to primarily come from drug company reps, a doctor will therefore not learn about gluten senstivity unless clubbed over the head with a knowledgeable celiac/gluten sensitive patient who pushes the issue and crams the info down his/her throat.

Oops....is my disgust with doctors showing??? :lol: :lol: :lol: :lol:

As for the difference between celiac and gluten sensitivity -

It appears the only difference is that celiac involves villous atrophy of the small intestine, and non-celiac gluten sensitivity does not. Apparently (from the web page I already gave you), there can even be microscopic villous atrophy (whatever that means), but it would be gluten sensitivity instead of celiac. I guess that means there has to be significant destruction of villi for it to be celiac. There are all kinds of other damage that can be caused by non-celiac gluten sensitivity, including organ damage and neurological problems. That's just what I gather from my reading.

Mary

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