Oh no! My son's Enterolab gene test

Zizzle · Post by **Zizzle** » Thu Mar 22, 2012 3:28 pm

Almost identical to mine: I'm HLA-DQ 2,3 (Subtype 2,9)

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

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

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

Lesley · Post by **Lesley** » Thu Mar 22, 2012 4:13 pm

He has such an advantage! His mother knows exactly what to do so that he grows up healthy.

starfire · Post by **starfire** » Thu Mar 22, 2012 6:56 pm

I'm sorry. I think our kid's problems always seem worse than our own. Lesley is right though, at least you know what to do about it (provided he co-operates).

Love, Shirley

Zizzle · Post by **Zizzle** » Thu Mar 22, 2012 10:52 pm

Thanks to Wikipedia, I was able to find out more than I ever expected about his 0301 gene. Interestingly, it seems to be protective against juvenile diabetes, and may serve to "mediate" celiac disease when present with HLADQ2. It came from my husband, who is 100% Italian, so I'm assuming he has the version most commonly found in Italy -- which seems to help the body adapt to "cereal eating". Probably wishful thinking.

http://en.wikipedia.org/wiki/HLA-DQ7

I mentioned the results to my hubby and he insists we should not do anything differently. He wants our son eating pizza and being normal like other kids, not fearing his food. He's OK with vitamins and probiotics and our low-gluten family diet overall, but it seems GF is out of the question. I wonder whether he should be tested every 5 years or so for celiac. I guess we'll see what the ped says at the next check-up.

Zizzle · Post by **Zizzle** » Fri Mar 23, 2012 8:57 am

So I Googled the gene test results and found people on other forums sharing their results. I found this interesting - in 2005, Enterolab was saying the 0301 subtype predisposes to MC and autoimmune syndromes. The results I received no longer say that, but could it be true? Here's one example of someone without a celiac gene:

Molecular analysis: HLA-DQB1*0502, 0301

Serologic equivalent: HLA-DQ 1,3 (Subtype 5,7)

HLA gene analysis reveals that you have a genotype that predisposes to gluten sensitivity (HLA-DQ1, 3 especially that involving DQB1* 0301). This genotype also can predispose to microscopic colitis and other autoimmune syndromes.

I hope my son's male gender is protective in some way. Now to test my poor daughter!

I think I'm very close to getting my tubes tied now...not that I wanted any more kids, but all this potential for autoimmunity has me totally freaked out.

Kari · Post by **Kari** » Fri Mar 23, 2012 9:44 am

Hi Zizzle,

Sorry to hear about your son's gene test results. My son did not test for the genes at Enterolab, but he did for gluten, and sure enough was positive. Although he did not have the D. issues that I have had, he was starting to have auto immune trouble, such as thyroid disease. Not willing to ever have to go through what he has seen me deal with, he dropped gluten, and feels much better. We also had my 3 grand children tested, and all of them came back with high numbers. Their household has now been gluten free for several months.

My grandson (the only boy) suffers with terrible airborne allergies, but with gluten out of his diet, he has improved a lot. I think the 3 kids actually think it's kind of "cool" to be gluten free, and have taken it to heart. Although my DIL has to pack their lunches every day, here in Colorado, gluten sensitivity seems to be getting more and more attention. I heard that our neighboring county even serves gluten free lunches to the kids who need it.

As far as pizza, I'm sure you know that there are many gluten free options. We have 3 pizzerias within half a mile of us that serve them. One in particular "Abo's" is excellent, and my son thinks their gluten free pizzas are better than the regulars. I even tried one with pesto and olives (can't have dairy), and was in heaven :). Of course, they are quite pricey, so we only go there for a special treat.

Anyhow, I certainly understand your frustration and ambivalence, so I just wanted to let you know that it may not be as difficult as you think for your kids, if there ever comes a time when they have to drop gluten.

Love,
Kari

Zizzle · Post by **Zizzle** » Fri Mar 23, 2012 10:17 am

Thanks for the support, Kari. My GF lifestyle seems easier everyday, especially with my husband embracing it for himself (most of the time). He's no longer declaring my food options as tragic or inedible on front of the kids

. But he is VERY CLEAR that he doesn't want our kids thinking there is something wrong with them (until a doctor confirms there is). He doesn't want them freaking out about food, or having to eat something different at birthday parties, etc. He wants them to eat regular bread (even though he's eating Udi's and they don't mind it). He is slowly accepting that my son can't have large quantities of ice cream or milk due to mild lactose intolerance, but he is NOT AT ALL willing to do the GF diet for prophylactic reasons.

Apparently he's not aware that many kids my son's age deal with serious allergies and health issues that are worse than having to eat GF.

We recently learned 2 of my husband's mother's family members have Type 1 diabetes, and many have thyroid issues. I wonder if the prospect of preventing juvenile diabetes would be more persuasive? If I knew we could simply wait for GI or other obvious symptoms to surface, then adopt the diet and mitigate all risks, I'd be OK. But I worry that damage and gene triggering is happening before symptoms become apparent. Imagine how horrible I'd feel if he develops Type 1 diabetes or another autoimmune disease, when I knew it was within my power to prevent it?

Hubby didn't want me to order the gene test. I knew he'd have at least one gluten-sensitive gene, so I shouldn't be surprised. But I guess I didn't expect him to be hit with one of the worst gene combinations.

I keep thinking about my doctor's remarks, that once genes are triggered, they are much harder or impossible to shut off.

With my freakishly high autoantibodies, I feel like I'm in a race to avoid being hit by a freight train. With no family history on my side of anything similar to what I'm dealing with, I'm certain my genes were triggered in adulthood. I can only hope that will be the same for my kids, but I feel like younger generations are getting their parent's ailments earlier and more severely.

My plan at the moment is to request celiac bloodwork on both kids at their next checkup, then consider Enterolab testing at the end of the year if I have leftover flex spending funds. With my daughter starting K in the fall, I suppose I'll gear up to pack lunches for both kids too. GF lunchbox ideas are welcome!!

Post by **tex** » Fri Mar 23, 2012 11:12 am

Zizzle,

You have quite a dilemma, since your husband is clearly still in denial.

From a February 1, 2011 blog by Dr. Lewey:

If you are not DQ4/DQ4 then you do have a risk for gluten sensitivity.

http://coeliacdisease.org/understanding ... ensitivity

And statistically, I believe that only 0.04% of the population falls into that category. That means that virtually everyone is susceptible to gluten-sensitivity, (at least 99.6% of us are). That may be why Dr. Fine no longer bothers to list some of these details on his test reports. I doubt that he stopped listing it because the risks have declined, with the passage of time.

And remember that Dr. Fasano's research shows that everyone responds to gluten, (except possibly that 0.04%, that Fasano may have overlooked in his study), by showing increased intestinal permeability of some degree, (the response is worse, as celiac disease develops, of course).

CONCLUSIONS: Based on our results, we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules.

http://www.ncbi.nlm.nih.gov/pubmed/16635908

Tex

Zizzle · Post by **Zizzle** » Fri Mar 23, 2012 11:41 am

tex wrote: That means that virtually everyone is susceptible to gluten-sensitivity, (at least 99.6% of us are).

And remember that Dr. Fasano's research shows that everyone responds to gluten, (except possibly that 0.04%, that Fasano may have overlooked in his study), by showing increased intestinal permeability of some degree, (the response is worse, as celiac disease develops, of course).

Tex,
I have made this argument to my husband, that most people are sensitive to gluten/that gluten is toxic, some people just tolerate it better, etc. Of course his GF trial led to us both believing he personally isn't gluten sensitive in the slightest, despite his mother's intolerance. So he's beginning to think the only value of the GF diet is to address current health problems, not to prevent them. I don't think he will ever conclude that the population would be better served by everyone going GF, especially not kids, who have a carefree childhood (with lots of yummy goodies) to enjoy.

He would argue that since everyone is gluten sensitive and only a small percentage develop celiac disease, Type 1 diabetes, etc, it doesn't warrant putting our kids on a GF diet. When I mentioned the risks of his mother's family history, he wondered whether their severely impoverished childhoods played a greater role in their health status. I wish there was a study (or risk calculator!) that said, "with your child's precise genetics, he has an xx% chance of developing disease in the next 1, 2, 5, 10 years." But obviously I have the genetics, and didn't develop anything until adulthood, and after multiple insults to my immune system.

Post by **tex** » Fri Mar 23, 2012 11:57 am

I hear you. It's tough to argue with someone who's asymptomatic, and he's clearly asymptomatic, (or maybe he's developed a tolerance). Only a stool test would resolve the question, and since he's in denial, he probably wouldn't submit to a stool test, and even if it were positive, he might not accept the findings. There are millions of people with a similar attitude, so he's got plenty of company. Most of them will never change their opinion, until they get so sick that they can't ignore it any longer.

Tex

MBombardier · Post by **MBombardier** » Sat Mar 24, 2012 10:48 pm

http://www.ihop-net.org/UniPub/iHOP More than you ever wanted to know about any gene. Updated every day.

I'm sorry, Z. I have had it lurking in the back of my mind that if I tested one of my kids and she only had one gene that she would have more of a chance not to have trouble later. I will be as bummed as you are if we test and she has two. I'm happy that my 24yo son told me this week that if he has to go GF, he doesn't think it is that big a deal. This is the same kid who ran outside and spit out a piece of GF biscuit last July just because it was GF. I guess with all three of his sisters eating GF now, he sees the handwriting on the wall.

And so true about kids with allergies. Our church has a shared meal every Sunday, and a family with a child who has severe peanut allergies just started attending. The church is now a peanut-free facility, and we are announcing the fact all over the place.

Gloria · Post by **Gloria** » Sun Mar 25, 2012 7:06 pm

I'm not sure that the genetic testing will reveal anything helpful. Since, according to Tex's theory, only 0.04% of the population doesn't have gluten sensitive genes, it follows that 99.96% of us do have them. That means that we would be testing only to determine the type of sensitivity that we have: celiac or whether we're double DQ1 and can expect multiple sensitivities, etc. Nonetheless, the treatment, as far as we are concerned, is the same: avoid gluten.

I've been trying to encourage DH to get tested, but with these percentages, what's the point? We can already assume that he has the genes.

I think it is very difficult to convince someone who is asymptomatic, and even someone who exhibits some symptoms, to give up gluten. They would reasonably argue that 99.96% of the population is not suffering because they are eating gluten.

I seem to be the only one with symptoms among my brothers and parents, yet I share their genes. My daughter, however, certainly has symptoms. If gluten sensitivity is so pervasive, the real question seems to me is: why do some of us react to it, and others don't?

Gloria

MBombardier · Post by **MBombardier** » Sun Mar 25, 2012 7:15 pm

Great question, Gloria. Or... why are people (myself included) asymptomatic until doing a food challenge?

Post by **tex** » Sun Mar 25, 2012 8:11 pm

Gloria wrote:They would reasonably argue that 99.96% of the population is not suffering because they are eating gluten.

And logically, they assume that since everyone has the genes, that's the normal state of affairs. Unfortunately they overlook the main issue - gluten in the diet is not normal. Just because everyone has been eating it for about 10,000 years, does not make it normal - it just means that everyone has been making the same unfortunate mistake for 10,000 years.

Gloria wrote:If gluten sensitivity is so pervasive, the real question seems to me is: why do some of us react to it, and others don't?

All that will be clear, after you read the book.

Tex

Post by **tex** » Sun Mar 25, 2012 8:14 pm

MBombardier wrote:Great question, Gloria. Or... why are people (myself included) asymptomatic until doing a food challenge?

Some of us are capable of developing tolerances for certain food-sensitivities, if we continue to eat those foods. If we then remove the foods from our diet, long enough to allow the antibodies to decline, a challenge will evoke a reaction. If we continue to eat them, again, we will once again become tolerant, (though we will continue to produce antibodies in our intestines).

That's been documented by research studies, for some celiacs, (regarding gluten), so if it applies to gluten, it almost surely applies to other food-sensitivities, as well.

And as you recall, I recently proved that I was still producing antibodies to casein, even though I was tolerant of it.

Tex