Enterolab Results

[bugsmom]

I just got the test results back from enterolab for my son. He is 22 months old as was Dx Celiac by a blood test about 2 months ago. I have never actually seen those scores. We were just told over the phone that he was a "27" and it was positive. I don't know which test the "27" was for. We decided to do enterolab to see about milk intolerance and about intestinal damage. After reading his results and the enterolab website, I think I understand most of it -- he is havign a reaction to gluten -- we knew we were having some problems with cross-contamination at the time of stool collection -- and his fecal fat scores seem to tell me that he is pretty messed up inside -- a lot of damage done.

I am not sure what to make of the anti-casein score . . . . he loves loves loves cheese -- and ice cream. He doesn't seem to have any reactions at all -- on some days it is the only thing we can get him to eat. Is this score really telling me that I need to take him off milk/dairy? Since taking him off the gluten he is a different kid -- happy, seemingly healthy. He still isn't gaining weight, but it has only been 1.5 months, and at least his big belly is gone and he isn't losing anymore. And does this score mean that I may have to take him off casein for good? or just until his insides heal up?

And about the genes . . . what is the difference, really, between gluten intolerant and celiac? This tells me that he doesn't have the celiac gene, but he is gluten intolerant . . . but the fat score says that he has intestinal damage, right? I mean, I know he has damage -- he hasn't gained weight in over a year and he is low-iron anemic. So, does he have celiac since there has been damage done? or not? I know that the important thing is that he really does have to be gluten free for life and it doesn't really matter what we call it -- but I would like to understand a little better

Fecal Antigliadin IgA 98 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 54 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1161 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 50 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)

thanks for your help --

I am also posting in the post-diagnosis board --

[AndreaB]

Wow!

The genes he has are gluten sensitive genes which from what I understand doesn't indicate celiac although they are pretty much the same. I'm beginning to think that the gluten sentitive genes just haven't been recognized by the majority of the doctors...but I could be wrong.

Has he been tested for vitamin deficiency at all?

He does need to be gluten and casein free for life. I know that is hard initially and I have some recipes that use cashews if you would like me to post them or pm them for you. There is a really fascinating article by dogtorj that I've only gotten a little way through so far. I believe the website is Open Original Shared Link.....otherwise it's .net. Why is the plane of our health in a death spiral is the article. Very long....I copied it over to my computer and am trying to work through it with my husband or I would have been through it by now.

With that severe of malabsorption, it will take some time to heal and the dairy will only impede that.....as well as soy (IMO). I am gluten/soy free and just leaving off dairy light to go dairy free.....I'm only mildly allergic though.

Hugs for both of you, you can do it!

[bugsmom]

Wow!

The genes he has are gluten sensitive genes which from what I understand doesn't indicate celiac although they are pretty much the same. I'm beginning to think that the gluten sentitive genes just haven't been recognized by the majority of the doctors...but I could be wrong.

Has he been tested for vitamin deficiency at all?

He does need to be gluten and casein free for life. I know that is hard initially and I have some recipes that use cashews if you would like me to post them or pm them for you. There is a really fascinating article by dogtorj that I've only gotten a little way through so far. I believe the website is Open Original Shared Link.....otherwise it's .net. Why is the plane of our health in a death spiral is the article. Very long....I copied it over to my computer and am trying to work through it with my husband or I would have been through it by now.

With that severe of malabsorption, it will take some time to heal and the dairy will only impede that.....as well as soy (IMO). I am gluten/soy free and just leaving off dairy light to go dairy free.....I'm only mildly allergic though.

Hugs for both of you, you can do it!

We have not had him tested for vitamin deficiency. When we landed in the hospital 2 again months ago for what was then an unknown cause, they ran many many many tests and the only thing they said was that he had low iron. I don't know what they tested for, though. A week later we had to call for the celiac results.

We have been seeing a homeopath for months and she had him on a multivitamin, an extra calcium, an extra vitamin C, a probiotic (he has also been in antibiotics), and when I can get him to take them, a liquid flax seed and fish oil supplement.

I also understand that since he has 2 genes predisposing him to gluten intolerance, he got one of them from me. Unfortunately we had to use a sperm donor, so the father is unknown and they don't test for this sort of thing at the sperm banks. The thing is, I have no symptoms -- none -- not one on any list anywhere -- I have no GI problems. I understand that if I start to get any, I should look to gluten as the cuprit, but do I need to worry about malabsorbtion or any of this if I am not having any symptoms?

Also -- I at first thought that we were looking at two to three months for recovery time and then I could start expecting some wieght gain -- but with these scores, I don't know what to think. Can anyone tell my their kids' malabsorbtion scores and how long recovery took for them -- just to give me an idea about what I am looking at?

thanks again --

[Nancym]

With the 0501 gene you're likely to see neurological problems too. Things like brain fog, neuropathy, MS like lesions on the brain (I think) and so on. You should probably get yourself tested Mom. Sometimes celiac is a silent disease.

As far as liking cheese, I'm convinced we usually love the food that we're intolerant too. I am intolerant to both milk and casein too and they're both things I could swim into, with my mouth open.

Diet-wise, I think Dr. Fine's suggestion of a diet based on fruits, veggies and protein sources (I use meat, fish, etc). You might want to look into the SCD diet (without the milk products). It is very healing.

[AndreaB]

Yes, you should get tested too. No one in my family had obvious symptoms. I went through enterolab and had my husband and 2 of my children tested based on my allergy results. Myself, daughter and oldest son have active gluten intolerance....see sig. Our numbers were not high, and we don't have the extensive damage but would have had more damage each year until it was bad enough to cause obvious symptoms or other health problems. There is such a thing as a silent celiac. I just started reading Dangerous Grains and that is one of the first things they cover.

[CarlaB]

You can see my Enterolab scores below. I was three years "wheat-lite" and two months gluten-free at the time of testing. I felt so much better gluten-free that I did not give up the casein immediately. However, after I adjusted to the gluten-free diet, I found I was reacting more to the casein and actually wonder if some of my reactions all along were from it. I am now gluten-free, casein-free, soy-free and corn-free. I will add back some corn and soy probably, but not till I'm feeling better.

He will do better off the casein. And, it is permanent.

I also have 2 gluten intolerant genes and find that I am very sensitive to even small amounts of gluten.

[bugsmom]

With the 0501 gene you're likely to see neurological problems too. Things like brain fog, neuropathy, MS like lesions on the brain (I think) and so on. You should probably get yourself tested Mom. Sometimes celiac is a silent disease.

Diet-wise, I think Dr. Fine's suggestion of a diet based on fruits, veggies and protein sources (I use meat, fish, etc). You might want to look into the SCD diet (without the milk products). It is very healing.

Thank you all so much --

How do you know this about the 0501 gene? Is there a good website you know of (or book) that I could get to read more about this kind of thing?

and what is the SCD diet?

Also -- when you suggest that I get tested, do you mean a blood test? enterolab? I am already gluten-free because I am still breastfeeding. But I have to say, I had every intention of going back to my "regular" diet after we stop the nursing. I need to be casein free too, right? CRAP!! I HATE this diet! Sorry -- I miss my Kashi cereal and my granola bars! Now I have to lose my yogurt and ice cream too???! Uhg. I know it will get easier -- it has to get easier

Is there another test for casein intolerance available besides enterolab? I have a few family members who are skeptical because enterolab isn't really "mainstream" right now. They have not objected to the gluten free diet because they have seen the difference it has made -- but with no symptoms from the dairy I think I am going to have a harder time with going casein-free. I have been talking about it since we got the results but have been told that I need to talk to a "real doctor" - which, of course, I am going to do. We do have an appt. in two weeks with his GI. But if the GI reacts to Enterolab with the same attitude, is there another test to run - besides a biopsy -- please tell me a biopsy isn't the only other option, because I am not doing it.

thanks again