I Got The Enerolab Results

[averyevansmom]

It's been a while since my last post.

Just got my son's results. Does anyone have any insight? Does it mean what I think it means? That I haven't been fighting the doc's all this time for nothing? Thanks for anyone's help in advance.

Becky

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0603

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

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.

[AndreaB]

From what I understand, he can have gluten intolerance but not celiac with those genes. Since celiac tends to other autoimmune diseases I would assume that he wouldn't be as prone to those because of the genes but I'm not sure.

[CarlaB]

You didn't post his levels for antibodies, so I don't know what kind of reaction he's having.

I had those same genes. I am very sensitive to even small amounts of gluten. Something like 95% of celiacs have celiac genes, so I guess we don't really know if someone with gluten intolerant genes can actually have celiac. I do have the autoimmune response to gluten, even without the celiac genes, so I know gluten is doing damage. Also, because there are two gluten-intolerant genes, I am very sensitive to gluten.

If you post the other numbers, I can tell you a little more. Even with those genes, I felt like I had my answer and with my response to eliminating gluten, I know it was the problem.

[Nantzie]

I also have a double copy of DQ1, subtype 6. See my sig line for some of my issues over the years. In my experience and being around the boards for while, I react the same to gluten as someone who has the main genes for it. When I did enterolab tests for myself, I just did the gene one too. It sounds like for the same reason as you. Wanting to make sure you were even in the right ballpark before you pushed for more testing. I've been doing the testing here and there as I can afford it. At this point, I've got the genetics for my kids and I done, and just the gluten intolerance test for my daughter in the works. In a few weeks, I'll get my son done.

The gene test only tells you if he is susceptible to gluten intolerance. It doesn't tell you if it's an active intolerance.

At this point, you can do a couple of things.

If you can swing it at all, get more testing from Enterolab. They have individual tests that you can get. I got a gluten intolerance test ($99) for my daughter that I'm waiting for results on.

Put him gluten-free without further testing. If he is having an active intolerance, he will improve. The problem with a 3yo is that he may have improvements that aren't necessarily obvious. Some of the things that I used to get at that age was the brain fog and sleep problems that may not have seemed obvious at the time.

I glanced back at your first post real quick to see what kind of symptoms he was having when you first found this board and I saw that you were giving him soy milk because of a dairy intolerance. I know that soy can really cause a lot of problems GI-wise. So that might be an issue too.

Does anyone else in your family have celiac, or symptoms or suspicions of it? If you have two genes, whether celiac or gluten intolerant, that actually means that both you AND your husband carry at least one gene.

Hope that helps. My two are climbing on me right now, so I've got to run. I hope he starts feeling better soon.

Nancy

[wonkabar]

Does it mean what I think it means? That I haven't been fighting the doc's all this time for nothing? .

Isn't it a great feeling to have proof you're not out of your mind??!! But seriously, it's good to know that your son does have the gluten sensitivity genes. So, if you haven't already done so, you can put him on a gluten-free diet. Did you do the stool sample as well to test for an auto-immune response and malabsorption?

My 3 year old son is extremely sensitive to gluten...physically and behaviorally. His stool sample with Enterolab was done after he was on a strict gluten-free diet for 2 1/2months and still came up "very" positive for a gluten sensitivity as well as an auto-immune response to gluten. He was also positive for one main Celiac gene and one non-Celiac gluten sensitivity gene. Thankfully, he was negative for malabsorption. His bloodwork was inconclusive. We chose not to pursue a biopsy due to his age...following a gluten-free diet is non-invasive and you don't need an Rx for it so it was a win-win!!

Bottom line is that we absolutely know he can't ingest gluten and that we've prevented his problems with gluten from developing into full blown Celiac Disease. A positive dietary response is the best indicator with little ones regardless of what any bloodwork indicates or even what some of the doctors say.

My son was having tantrums, yelling/crying for no apparent reason, not sleeping through the night, extremely irritable, low frustration level, blistering/bleeding diaper rash, several FOUL smelling/pale/wet stools (like applesauce) per day, etc. Once we removed gluten from his diet, ALL of these symptoms disappeared. (Well, except for the tantrums...he is 3 after all! ) You will absolutely see a change in your son and overall improvement when you remove gluten if that is infact the issue. Good Luck!

--Kristy

*PS--try rice milk instead of soy...my son is also sensitive to soy, among other food allergies, and had GI issues when we had him on soy.

[Rachel--24]

From all that I've researched DQ1 can cause some very bad symptoms. Having double DQ1....the symptoms can be just as bad and even worse than that of a diagnosed Celiac. There is alot of research about this on the Braintalk gluten free message board if you are interested. Not having a Celiac gene doesnt lessen your chances of developing other autoimmune diseases...I have DQ1 and DQ3...and I also have autoimmune thyroid disease (Graves). My Enterolab results showed no Celiac gene but positive across the board for everything else...including almost severe malabsorption. Does your son have many symptoms?

[averyevansmom]

Thanks everyone so much for your insight. The results can be so confusing to interpret. I have put in a call to the nurse at Enterolab. Hopefully I get a call back soon. My son has been gluten free since mid January. He had an upper endo (biopsy) as well as colonoscopy done early January. At that time his iron levels were critically low (8) normal range being 49-181. He was a miserable infant with severe skin reactions to certain foods I ate (dairy specifically), I nursed. He has no food allergies. He threw up, had diarrhea, bleeding blistery rashes on his bottom, sometimes he was constipated, sandy, grainy poops, horrible, horrible smelling to the point I was actually asked to leave a children's consignment store. He was checked at 9 mo's for Hirschprung's disease. Negative. This has been an ongoing process for 3 years until my HUSBAND AND I decided to start the gluten-free diet. The GI said NOT to do the gluten-free diet and wanted to prescribe medication. For what I don't know, because they still had no answer for us. They insisted he didn't have Celiac because his test's, blood and biopsy were neg. The doctor who performed the biopsy came out of the operating room and told me and my husband that she saw some patchy spots in his small intestine and a lot of inflammation. They diagnosed him as having duodenitis. After much of my own research, I've found duodenitis is found in 8.5% of celiacs and many have lesions found in the small intestine. He has been on rice milk for quite some time, probably before the gluten-free diet. He loves it. He can't have ice cream or yogurt either. He is doing great now. His pediatrician is amazed and we have switched pedi gi's. He's a little more open minded. My question now is, and I've googled it, is, what is the difference between gluten sensitive and celiac disease. From what I gather is gluten sensitive is undiagnosed celiac. That is to say, all regular testing (blood, biopsy) is negative. And in the case of celiac, the tests are positive, whether it be biopsy or bloodwork, it's confirmed. Does that sound accurate?

[CarlaB]

I have two gluten sensitive genes, as I mentioned above. I think of gluten sensitivity as an umbrella. Celiac disease is one form of many manifestations under the umbrella. DH is another. Non-celiac gluten sensitivity is another. How they are all related, I don't believe is really understood, but I believe that those docs doing research are starting to see there's more to gluten sensitivity than simply celiacs who have positive biopsies. Yea, it'd be easier if all of us had positive biopsies, but if the disease can manifest itself both in the skin and in the small intestine, it only makes sense that there would be other manifestations as well. There also has to be various stages of the disease. You don't just wake up one morning with a destroyed intestine!!

[CDFAMILY]

I have posted this a couple of times but thought I would post for you about the ferritin since your sons iron is so low.

There is really no difference in treating a gluten sensitive person and a celiac person....they both go gluten-free. If you have a good doctor being GS will not be taken lightly but if you have a bad doctor he will consider it a fad diet and you should definitely shop for a new doctor.

So far they say you must have the DQ2 and/or DQ8 to have celiac although I think in the future they will find some others they just haven't done enough research yet.

I found this in my notes and hope it is ok to print

"Hadjivassiliou says, in "Gluten sensitivity as a neurological illness"

"IgG anti-gliadin antibodies have been the best diagnostic marker in the neurological population we have studied. IgG anti-gliadin antibodies have a very high sensitivity for celiac disease but they are said to lack specificity. In the context of a range of mucosal abnormalities and the concept of potential celiac disease, they may be the only available immunological marker for the whole range of gluten sensitivity of which celiac disease is only a part. Further support for our contention comes from our HLA studies. 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.

Both Dr. Fine, a leading celiac disease researcher, and Dr. Hadjivassiliou have identified the DQ1 marker as predisposing one to a non-celiac gluten sensitivity...which can include all the same symptoms and risks as celiac disease, except there will usually not be villous atrophy on biopsy which is required for a celiac diagnosis. (Dr. Fine suggests DQ1 may be seen in 1-2% of biopsy proven celiac disease.)"

Does your son have any other low counts besides iron?

Low normal ferritin

Low Lymphocytes

High TIBC

Low Iron

Low normal Vitamin D

Low vitamin K

Below is a link to ferritin information

Open Original Shared Link

Am J Clin Pathol. 1982 Jan;77(1):82-6.

Related Articles, Links

Serum ferritin levels in celiac disease.

Souroujon M, Ashkenazi A, Lupo M, Levin S, Hegesh E.

Of the various common assayed parameters of iron metabolism, serum ferritin levels are the most discriminatory in distinguishing between non-treated celiac disease and other gastrointestinal disorders in the pediatric age group. Patients on normal diets usually have very low ferritin levels that increase at an average rate of 1 microgram/1/month when placed on a gluten-free diet. When the patient returns to a normal diet, however, ferritin levels decrease rapidly at an average rate of about 4 microgram/1/month. There is a relationship between abnormal intestinal changes and low ferritin levels in celiac disease with improvement in both when the patient is on a gluten-free diet. It is suggested that serial blood ferritin evaluations together with the leukocyte migration inhibition factor production assay should eliminate the need for invasive intestinal biopsies for the confirmation and possible follow-up to response to treatment.

PMID: 7055099 [PubMed - indexed for MEDLINE]

Hope this helps

CDF

[wonkabar]

There also has to be various stages of the disease. You don't just wake up one morning with a destroyed intestine!!

Amen to that! That's the soapbox I've been standing on for the last year in regards to my son. So, should we have waited until my 3 y/o son had full-blown Celiac Disease and intestinal damage, among other things, before we started him on a gluten-free diet?? I've never heard of anything more ridiculous than this. You need to have severe intestinal damage prior to a Dx?? Could you imagine if it was this way with cancer patients? My 33 y/o brother is in partial-remission (4 years) with Hodgkins Disease; he wouldn't be here with us right now if that was the attitude oncologists took.

There are stages for all sorts of other illnesses and medical conditions. Why is it that people have to suffer for so long with Celiac??? I've only dealt with this for the past year and a half with my son and coudln't be happier that we figured out what it was. I feel just awful when I read about so many of you who have had to suffer for so long. Sorry for going on a tangent; it just makes me nuts to think how sick my son could've gotten had we listened to the ped gi who emphatically told us he was "just fine." Go figure!

CDF-interesting stuff!

[jcc]

From all that I've researched DQ1 can cause some very bad symptoms. Having double DQ1....the symptoms can be just as bad and even worse than that of a diagnosed Celiac. There is alot of research about this on the Braintalk gluten free message board if you are interested. Not having a Celiac gene doesnt lessen your chances of developing other autoimmune diseases...I have DQ1 and DQ3...and I also have autoimmune thyroid disease (Graves). My Enterolab results showed no Celiac gene but positive across the board for everything else...including almost severe malabsorption. Does your son have many symptoms?

Hi! Braintalk crashed about three weeks ago, and we have no idea when it might be back. Because of the crash somebody suggested I put The Gluten File out on a website...so I have. We've lost some of our data because the back up copy was from June 2005, and of course, we lost all the great discussion threads. This is better than nothing, though, and we hope Braintalk will come back up with all of our data in tact. Oh...I've only added it out over the last couple of days...so it is a work in progress~ be forgiving!

Open Original Shared Link

Hope this helps!

Cara

[CDFAMILY]

Cara,

Thanks for all your hard work. It is great to have the Gluten File at our fingertips again! There is so much usefull information in your file and it is so well organized. Your hard work is greatly appreciated.

CDMom