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I Need Advice!

kdaley

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kdaley Newbie
kdaley
Posted

Hello, my name is Kelly, and I am new to the group. Throughout my life I have experienced a lot of GI issues, that have coincided with increased consumption of Gluten (I really did not make that connection until this January). I'd feel reasonable great in the summer (times when I rarely if ever ate things that contained Gluten), and then would become progressively misserable throughout the winter as I ate more breads. cereals, and cookies.

Anyway, I spoke with my doctor about this, and she ran the celiac serology panel (that included IgG and IgA Gliadin Antibodies, and total serum levels). This test came back negative, with normal serum levels. Then, I started a gluten-free Diet. It has been three weeks, and I feel better than I have in my entire life. My joints don't hurt any more, my bowels are not going crazy any more, and I have more energy. I don't mind being gluten-free at all, especially since it makes me feel so good!

Due to my response to the gluten-free Diet, my doc sent me to a GI specialist who decided to run the Gene Test for Celiacs. Those results came back today, stating that I was DQ2- and DQ8-, with a less than 0.1X (or extremely low risk) of developing Celiacs. However, the "HLA DQA1*0201 Alleles" was detected - I have no idea what that means, and the GI doctor did not explain.

I was hoping that someone here could shed some light on these results. I have had the allergy tests for the "big 10." I really do believe I am sensitive to Gluten. Can a person have a gluten intollerance without having positive genetics, are there other genes that might be involved, or do I have somewhat positive genetics with that "HLA DQA1*0201 Alleles?"

Any and all advice would be extremely helpful! Thanks so much, Kelly

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Ursa Major Collaborator
Ursa Major
Posted

Did I get that right - you have the DQ2 and DQ8 genes, but your risk of developing celiac disease are very low?

Those are the two 'official' (here in America) celiac disease genes. If you have the symptoms and you have the genes, and are getting well on a gluten-free diet, then YOU HAVE celiac disease! Those blood tests are not all that reliable and yield many false negatives. People here even had negative blood tests and a positive biopsy with flattened villi!

Please just ignore that ignorant GI doctor and keep eating gluten-free. You know you can't tolerate gluten, it makes you ill when you eat it. No doctor can stop you from eating whatever you want, or eliminating foods that make you ill if you decide to do that.

Good for you for figuring it out.

kdaley Newbie
kdaley
Posted
  • Author
Did I get that right - you have the DQ2 and DQ8 genes, but your risk of developing celiac disease are very low?

Those are the two 'official' (here in America) celiac disease genes. If you have the symptoms and you have the genes, and are getting well on a gluten-free diet, then YOU HAVE celiac disease! Those blood tests are not all that reliable and yield many false negatives. People here even had negative blood tests and a positive biopsy with flattened villi!

Please just ignore that ignorant GI doctor and keep eating gluten-free. You know you can't tolerate gluten, it makes you ill when you eat it. No doctor can stop you from eating whatever you want, or eliminating foods that make you ill if you decide to do that.

Good for you for figuring it out.

I'm sorry, to clarify the test said I was DQ2- and DQ8- (negative after each meant negative for each), but that I had the presence of the "HLA DQA1*0201 Alleles." So I'm negative for the two major genes, but have this "HLA DQA1*0201 Alleles," and I do not know what that means.

Kelly

Ursa Major Collaborator
Ursa Major
Posted

Okay, sorry about the misunderstanding. It appears that you have the genes for gluten intolerance. Which you obviously are, and it is every bit as serious as celiac disease.

So, keep being gluten-free and be well. Most doctors are extremely ignorant when it comes to gluten intolerance (and only slightly more educated when it comes to celiac disease).

Some people have been diagnosed with celiac disease with blunted villi who didn't have those official genes. In other countries they recognize more celiac disease genes than here.

kdaley Newbie
kdaley
Posted
  • Author
Okay, sorry about the misunderstanding. It appears that you have the genes for gluten intolerance. Which you obviously are, and it is every bit as serious as celiac disease.

So, keep being gluten-free and be well. Most doctors are extremely ignorant when it comes to gluten intolerance (and only slightly more educated when it comes to celiac disease).

Some people have been diagnosed with celiac disease with blunted villi who didn't have those official genes. In other countries they recognize more celiac disease genes than here.

Thanks for your reply. Do you know anything more about the "HLA DQA1*0201 Alleles." I've tried to look it up on the Internet, but have not found anything definitive. Kelly

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