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pain*in*my*gut

Just Got Genetic Test Results....help!?!

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So, the nurse just called and told me that my HLA DQ 2 was positive, but my HLA DQ8 was negative. From what little I have been able to research, you don't have to have both of them positive to still be a candidate for Celiac Disease, but you have to have at least one, right? I know that having the genes does not mean that I have Celiac, it just means that it's possible for me to have it.

Anybody have the DQ2 and not the DQ8 and still have positive biopsy results? Is there any correlation between the severity of the disease if you have both genes instead of just one?

Good grief, we need to have medical degrees to figure all this crap out! Why can't it be simple, like when you have strep throat? Or a pregnancy test....YES OR NO?? Sorry for the vent....I just want answers already! :angry:


Celiac DX 9/2011 ~ Gluten free ever since

Hashimoto's Thyroiditis 10/2011

Premature Ovarian Failure 11/2010

Rheumatoid Arthritis 10/2011

Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

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Good Grief, indeed!. I just went back to your prior topic, and with a DGP that high, and the DGP being the most specific test I know of for celiac, it surely doesn't matter about what the other tests said or what the biopsy says (and he may not do it properly either, or it could be a false negative), I'm with shadowicewolf, I would consider myself diagnosed.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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:rolleyes:

Good Grief, indeed!. I just went back to your prior topic, and with a DGP that high, and the DGP being the most specific test I know of for celiac, it surely doesn't matter about what the other tests said or what the biopsy says (and he may not do it properly either, or it could be a false negative), I'm with shadowicewolf, I would consider myself diagnosed.

Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a huge adjustment.

Then there is my 6 year old son to worry about. He has a MAJOR fear of needles, and I know just getting his blood tests will be torture for him. He is a gluten lover like his momma, so if he has it, he will be in for a major life change as well. I just wish this disease wasn't genetic so I didn't have to worry about him at all. :(

Thanks for the replies! I am so glad I found this place! I am pretty sure I will be around here for a while....I guess I had better find a comfy seat... :rolleyes:


Celiac DX 9/2011 ~ Gluten free ever since

Hashimoto's Thyroiditis 10/2011

Premature Ovarian Failure 11/2010

Rheumatoid Arthritis 10/2011

Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

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:rolleyes:

Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a huge adjustment.

Then there is my 6 year old son to worry about. He has a MAJOR fear of needles, and I know just getting his blood tests will be torture for him. He is a gluten lover like his momma, so if he has it, he will be in for a major life change as well. I just wish this disease wasn't genetic so I didn't have to worry about him at all. :(

Thanks for the replies! I am so glad I found this place! I am pretty sure I will be around here for a while....I guess I had better find a comfy seat... :rolleyes:

Yea I agree with the others that you are one of us. Whether you are going to choose to biopsy is up to you.

If your little one has symptoms then do get him tested. You do have the option of making him gluten free, at least at home, without testing. Schools however sometimes want to see an official diagnosis to take the precautions they need to take. If your son has no symptoms, no growth decrease, no tummy troubles, no behavior or learning issues etc you can always wait to have him tested. You could also do stool testing on him through Enterolab but they do not officially diagnose celiac. They can tell you if he has gluten antibodies in his stool though and some have found them helpful.

As for missing gluteny foods there are many gluten free options that are really quite good. Check out the recipe section and if you have favorite stuff ask in the products section for suggestions. When you are ready to start the diet do go with as much whole unprocessed food as you can as it will help you heal faster by lessening your chance of cross contamination.

Oh and you can be a diagnosed celiac without either of those 2 genes as I know all too well.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

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:rolleyes:

Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a huge adjustment.

Then there is my 6 year old son to worry about. He has a MAJOR fear of needles, and I know just getting his blood tests will be torture for him. He is a gluten lover like his momma, so if he has it, he will be in for a major life change as well. I just wish this disease wasn't genetic so I didn't have to worry about him at all. :(

Thanks for the replies! I am so glad I found this place! I am pretty sure I will be around here for a while....I guess I had better find a comfy seat... :rolleyes:

I'm a total gluten lover as well. It gets easier I promise..also gluten-free food is getting better and better.

Re your son and needles - my kids have had heaps of blood tests at this stage, we have a numbing patch over here in Oz called EMLA, not sure if you can get it in the US but I assume you can - probably under a different name. Anyhow you just put it on the site where the blood will be taken for an hour and then they won't feel a thing. Just get the Dr/nurse show you where the will take the blood from.

I haven't had a biopsy either and I also only have one gene, my GP is100% that I'm coeliac based on my symptoms and the genes (no official diag of course)and the fact they have completely resolved on a gluten-free diet.


HLA DQ8, gluten-free since January 2011

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