These results are for my 10yo son. His sister tested negative on her bloodwork but had a positive biopsy for celiac. I'm just not sure what to do with him at this point. He has ADD and mood swings and sometimes has GI symptoms. Apparently he's not making antibodies, but he does have slight malabsorption? His two younger siblings are on the diet and I've noticed a huge improvement in their health, but I haven't noticed much difference in him. The two younger children had no weight gain, rashes, bone and joint pain, GI symptoms and irritability, but all of that has resolved on the diet.


A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 8 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 5 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 357 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 5 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

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

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was below the upper limit of normal, and hence there is no direct evidence of active gluten sensitivity from this test. However, because 1 in 500 people cannot make IgA at all, and rarely, and some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have a syndrome or symptoms known to be associated with gluten sensitivity, a gluten-free diet may help you despite a negative test. If you have no syndrome or symptoms associated with gluten sensitivity, you can follow a gluten-containing healthy diet and retest in 3-5 years; or you may opt to go gluten-free as a purely preventive measure.

Interpretation of Fecal Antitissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

Interpretation of Fecal anti-casein (cow's milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a 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 the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

With malabsorption but low antibodies, he could be one of those who are low in IgA (can't remember the exact name -- it is what your test results were talking about). There is a blood test to see if this is the case, I believe.

Have you tried taking your son off of dairy, too? I know of anecdotal reports that this helps with symptoms such as your son is experiencing. It could be that he has some other intolerance, for that matter.

You can ask Enterolab for guidance as well.

Your son is double DQ1 as I am & most everyone in my family.
That is the gluten intolerant gene & if you are double DQ1 it has been my experience with the people that I know that it comes with neurological symptoms & a lot of other food "allergies".
In addition to that we get all the usual wide array of celiac problems.

I think that the medical community in the future will come to realize that double DQ1 is not good at all!!!!!.

I think you should definitely take your son gluten-free & DF as well - that dairy really messes with your brain & a lot of us double DQ1 people cannot tolerate dairy. I would also avoid soy - no one really needs that stuff. All artificial sugar should be a great big no. Look for signs of other food intolerances...

I would not pay much attention to the low test results... the dietary trial is the real answer.
Oh & you should start him on B12 right away & just keep him on it forever. It keeps the depression away for me, for one thing. I can tell if I skip a day on the B12.

Good Luck, & welcome to the double DQ1 club!! Read the book "Dangerous Grains"

I was wondering the same thing. My daughter's blood tests were all negative, and she has swollen finger joints and frequent infections which can be symptoms of IgA deficiency. Luckily, her doctor decided to go ahead with the biopsy because of her GI symptoms, and she did test positive for celiac. I'll ask our family doctor about his IgA levels next time we go.

I will try a dairy free diet with him. I've already cut my dairy way back because of my skin problems, but the kids practically survive on cheese. He's so picky...I don't know what I'll feed him!

Thank you so much for the information and advice. I thought I had seen some information about double DQ1, but of course I couldn't find it after we got his results back.

Do you think I should have him tested for other allergies as well? He has the "allergy shiners" everyone talks about.

At this time I would just take him off gluten & dairy. Do not add in soy, which a lot of people do when they go gluten free. Just be aware that if he seems to still have symptoms that it could be another food, which is easier to find once gluten-free/DF. You could also read the book "Eat Right for Your Blood Type" It was spot on for me, well except for a couple things I crossed out that were not gluten-free/DF.

Also, I will say that he might become very sensitive to gluten cross contamination after he has been gluten-free for awhile. It seems like a good % of us double DQ1 people are. Once he has been gluten-free for awhile he might start to show more signs of glutening than he does at this time.

The ADD should clear up after awhile gluten-free/DF, might take a year or more...

For foods, let him have whatever alloweed foods whenever, remember to think outside the box when it comes to food & that no one really needs wheat or dairy.

I hadn't heard that about double DQ1; I also have that. Where did you hear that?

Sometimes I wonder if I would have felt better overall if I had continued to eat gluten. My reactions to occasional traces are way more than anything I ever experienced before when I ate lots of the stuff. It isn't like I had an endoscope done and damage was shown. I just have a test that isn't widely accepted by the medical community and hasn't been supported in a peer-reviewed article.

Oh well

hathor, well it is because I know it from my friends & myself & others that post to another board that are double DQ1. You could be eating gluten & be like a friend of my sister, the lady is 55 & dying of esphogus (sorry on spelling) & colon cancer & the intestines between those two are all damaged & it has spread to her lungs, she was just diagnosed about two months ago, she has had 3 chemo treatments & just spent 6 days in the hospital, looks like she might not make it, all the while continuing to eat wheat because there is no "scientific proof" that she should be on a gluten free diet etc. etc. I do not know what genes she has & no one will ever know because no cancer patient is ever tested for celiac etc etc etc

or my friend that is double DQ 1 with a positive biopsy & then testing thru Enterolab, because she just wanted to & she has osteoporosis plus another auto immune illness called HS, for short a problem with the sweat glands (very bad & no known cure) I have heard of several other people that have HS & also celiac, & I think the one is double DQ1, I can't remember but he is a child of about 12 I think. His mom posts on another board. My friend is about 56 & will be gluten-free/DF one year in September. She has had problems her whole life & had access to the best doctors & still did not get answers until I gave her the book "dangerous Grains".

Enterolab might not be "accredited" by the fools that have let this disease wreck havoc on lives & families but a lot of the better, modern, up to date doctors are now using Enterolab for their patients, like my friends specialist. I grew up with an old saying, don't be the first to try new things but also do not be the last...

Most double DQ1 people do not post to this board...

Chrisbee: I forgot to address the issue of the black color under the eyes. My double DQ1, Enterolab positive grandson age 11, has that also, I think it is from the gluten, because he was gluten-free for about 6 months & they went away. I have seen other people post about this but it has been awhile.

my grandson is no longer gluten-free because according to my son "it was ruining his life" he meant his life not his son's life. I blame him first & then my daughter in law because she now thinks that you just have to think happy thoughts & go to a therapist & not be complusive about gluten intolerance & it will all go away. (no joke, I have this in emails!!!) Of course she has at least one DQ1 gene, she takes tranquilizers to make it thru the day, has dyslexia, is overweight, etc etc & of course her mom, has the osteoporosis, IBS, Migraines, etc etc, & dil's sister's kids are allergic to soy & have other issues... My daughter in law thinks all these symptoms are okay because it is JUST gluten intolerance it is not like they have celiac or anything serious Forget that her best friend whose mother is a biopsy dxd celiac with severe problems and that the best friends sister is also gluten-free, but that best friend who had thyroid cancer at 30 & has two kids with "issues" is still eating gluten. I mean how stupid is that. The children about 12, 9, & 5 are not allowed to eat or drink anything past a certain hour in the day so that they will not be pooping & throwing up in the middle of the night & you know making a mess on the carpets & bed linens. But oh my gosh they are all so happy making their doctors appointments & stopping on the way for hamburgers or pizza & the doctors are all happy. well except maybe for the ones treating my 11 year old grandson the one with double DQ1, he has failure to thrive & might be put on growth hormones...

I wasn't trying to be argumentative. I've repeated the same things myself from having been told this before. I've just been frustrated trying to find anything specific in the literature about double DQ1. I thought you might have had some links. It seems every time this comes up I hear about this information that is out there somewhere, but my attempts to search just get me what people say about it on discussion boards. There is probably something in the scientific literature; I've just been frustrated in trying to find it. So whenever someone brings this up, I ask.

I think I actually saw something once in some study, but darned if I can find it now.

My gut instinct (LOL) is that the Enterolab testing is valid and I have switched my eating as a result. I don't contemplate changing this (although I dream of doing so ...) It WOULD be nice if things got published and more established. At least it would make it easier in talking to others, like my doubtful relatives who think I need to have some sort of other testing and that I don't have a real diagnosis.

Oh, I forgot to ask. Is there a place where double DQ1 folks DO post? If so, I'd like to check it out.

Allergy shiners can be from food intolerances and/or metals if I remember correctly.

If you are willing I'd like to recommend the ASYRA test for food intolerances. My oldest son only came up with 3 things on an ELISA IgG test last year but came up with lots of stuff last week with ASYRA. He was just over on the enterolab for gluten, just under for soy and he had some malabsorption. His food intolerances don't seem to bother him aside from D. He does have a problem with mercury as well. I assume mostly from me as I have many amalgams. Vac's could have been something else that added to that.

My daughter is my oldest. She, along with my youngest son have the most obvious food intolerances that have been brought on by toxins in the body. Even with eliminating my daughters obvious intolerant foods, she still has shiners. She does have compounds of foods that came up with her testing. We hadn't had the food panel done with her.

I don't know where you live but if you search out a naturopath/holistic doctor you can find out if they do the ASYRA.

Sorry Hathor, nothing directed at you, just ranting on with my frustration...

I will PM you. There are several doctors besides Dr Fine that are studying gluten intolerance, none of which I know off the top of my head, sorry.

The reason that you do not have any "official" sites to check for this information, is because we the DQ1 people have only recently been recognised & really only thanks to Enterolab. It is hard enough to get a dx if you have a DQ2 & a DQ8 but if you do not have those genes you are told not to worry about it & just eat whatever you want.

I know there is Hadjivassiliou. I can't even spell that off the top of my head with an abstract of one of his articles in another tab. I wish I could remember where and how I got access to a full article by him that mentioned DQ1.

I was ranting too in my post from my frustration. Rereading what I said I thought it might have been read to be challenging the entire notion, which certainly isn't where I'm coming from. Well, I wish I could challenge it, eat what I want, & feel just fine, but I can't.

I remember that abstract you are talking about, i had it saved on my other puter before it fried. I really wish i still had it tho. i know it talked alot about dq1, maybe its time i take that puter down and see if they can fix it and hope it is still saved on there.

paula

I've seen a few article on DQ1 also:

Try this link, if it doesn't work search for Edwin Liu, DQ1,celiac.

http://jccglutenfree.googlepages.com/genetictesting

Here's a portion of his article:

Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. About 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, so it may be questionable practice to rule out Celiac Disease soley by the absence of the main genes (HLA DQ2 or HLA DQ8).


While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found it in 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population.



From "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:
"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

(In his research, Dr Liu suggests that If you have subgroups DR5 and DR7, they can mimick DQ2 even if they are on 2 different chromosomes.)

Thanks. Has anyone seen anything, other than discussion group comments, about the impact of double DQ1?

I frequently get cold for no apparent reason & my doctor was unable to discover a cause. Would this be considered "neurological," I wonder? Of course, this is a pretty minor symptom. I've also fainted a few times over the years, but still ... I don't want anyone to think I put it in the same category as the serious problems discussed in Dr. H's studies. I'm just curious.