Genes, Intolerances, and Severity of Symptoms

[tex]

Hi All,

In the past, we've searched for a possible "connection" between genes and various food intolerances, (other than gluten), and/or a possible connection between genes and the severity of symptoms that we experience. I haven't exactly "cracked the code" yet, but I have stumbled across some very interesting information that's related to exactly this area of interest.

While reading some of the celiac forums, I've noticed that there are certain individuals on some of those forums, who consider themselves to be members of an "elite "Double DQ 1" club, so to speak.

Among the members of that group, it is generally considered to be factual, that they are sicker than typical celiacs, and they claim to be more prone to complications, such as celiac-related neurological issues, depression, heart problems, and various other autoimmune diseases. Also, they seem to universally agree that as a group, they have a tendency to have multiple food intolerances, and their sensitivities are more pronounced than "normal" DQ2 and DQ8 celiacs, (IOW, they indicate that they are more sensitive to food triggers, and their reactions are more severe, when compared to "classic" celiacs.

Note that we have a number of members here with similar credentials:

For example, here are Polly's gene molecular test results:

HLA-DB1, Molecular analysis, Allele 1 0501
HLA-DB1, Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

Here are Celia's results:

HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Here are Gloria's results:

HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

I didn't see any others with this distinctive pattern, (note that Polly's and Gloria's results are identical), but it's certainly possible that I overlooked someone.

Anyway, the point is, each of these individuals has many intolerances, and/or many autoimmune issues, and their symptoms are very difficult to control. Polly, for example, has been very diligently following a diet that excludes all traces of all of her known intolerances for what? - 7 or 8 years now? - and yet a colonscopy last year showed that she still had traces of inflammation in her biopsy samples. It took a year on the diet, before she was able to achieve remission.

I'm not sure whether Celia was ever able to achieve remission, but she had many, many autoimmune issues, and if I recall correctly, she insisted that she was not gluten sensitive, (though I don't believe that she was ever tested for gluten sensitivity), so she never seriously considered the diet. She and her husband decided to spend a year in a French monastery, (if I recall correctly), so we haven't heard from her in quite a while.

Gloria, also seems to have many issues, and many intolerances, and she is currently using both diet and Entocort to control her symptoms. Her GI doc has been trying to persuade her to wean off the Entocort, but her symptoms return whenever she tries, so it will probably be a while before she heals enough to where she will be able to do that. At any rate, she is also a prime example of a double DQ 1 individual, with severe symptoms and multiple intolerances.

If I'm wrong about any of the details that I've posted here about anyone, please feel free to correct me, since I don't claim to be known for my memory skills.

This observation certainly doesn't answer all the questions that we have about these issues, but I thought that it was interesting that we, (MCers), are not the only ones wrestling with these questions. And, it is becoming increasingly obvious that there are, indeed, connections between genes, food sensitivities, and severity of symptoms.

Tex

[mle_ii]

And here are my results, though I can't remember how it fits in with the results you're talking about.
HLA-DQ Gene Molecular analysis: HLA-DQB1*0201, 0301

Supposedly both of mine make me hightly succeptable to MC. And one of them is the majority of folks with CD. I wouldn't consider myself highly reactive to foods unless my SIBO is going full force, then most foods bug me to some degree or another.

Mike

[tex]

Mike,

Yours is Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7).

Mine is Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5).

Neither one of us is a "member" of the Double DQ 1 club, (nor the Double DQ X club, for that matter).

Anyone with double homozygotes has a significantly increased risk of developing diseases keyed to the genes involved. For example, it appears that Andrew, (thedell19, aka. Terps), has a significant risk of developing celiac disease, based on his results:

HLA-DB1, Molecular analysis, Allele 1 0201
HLA-DB1, Molecular analysis, Allele 2 0201
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

Obviously, he's an honorary member of the Double DQ 2 club, a dubious distinction.

Tex

[Gloria]

Good observations, Tex. I believe that the genetic test results hold a key for many of us. I'd bet that Dr. Fine has found a correlation between certain intolerances and genetic types. Hopefully he will publish his observations soon. I never noticed that I have a double DQ 1. Thank you for doing this research.

As you wrote, Polly's and my results are identical and we also have many similar intolerances. I don't think I know all of my intolerances yet. I only claim the ones tested by Enterolabs and the non-food ones to which I've had obvious severe reactions. I suspect I have other intolerances because, as you've reported, I'm presently unable to reduce my Entocort dosage and maintain remission. Even on this dosage (6 mg.), I have to be very careful about what I eat or I will have a reaction.

[Polly]

Hi Tex,

Thanks for posting this. I now have a new identity - not just MC/MI but "double DQ1". Fascinating......as time goes on we learn more and more about what is behind all of our symptoms and findings. It is actually reassuring to see this. I remember how alone I felt when I kept discovering new intolerances......back in the days when most people could put themselves into remission by eliminating only gluten or gluten and dairy. I was so discouraged.

Love,

Polly

[CAMary]

Wow-

I am so impressed with how you "scientifically-minded" folks can look at a bunch of data and make sense of it all! I ahould have had you all help make heads or tails of my cancer pathology reports

As for me? Well, I saw "DQ" and thought - hmmm Dairy Queen - I could really go for an M & M Blizzard right now

Keep up the good work - you'll all earn honorary PhDs yet!

Mary