Enterolab Positive - Blood Work Negative!

[mykidsmommy]

I got my 2 1/2 year old DDs enterolab results today -

here they are -

Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 222 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 163 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow

[EBsMom]

Can someone explain how these 2 tests can be so different!!! It sounds like she has celiac!!! Or could she just be gluten sensitive??

WAH! I'm so new to this, help!

It's my understanding that antibodies show up in your stool before they show up in your blood. It makes sense, if you think about it. The antibodies originate in your intestine and only spill into your bloodstream when your intestinal wall is damaged and leaky enough to allow stuff through. You can't know from the fecal test if she has celiac disease. Enterolab can tell you if she's gluten intolerant, and that's all they claim to do. That's because the only "sanctioned" way diagnose celiac disease is with a positive biopsy result. Your dd does have the DQ2, which is a "celiac gene." And she's obviously producing antibodies to gluten and casein....and has an elevated tTg, which means that she has damage in her intestine. IMHO, if it walks like a duck and quacks like a duck, you can be pretty darn sure it's a duck (or celiac disease, in this case.) Will you take your dd off of gluten? That would be another way to confirm - positive response to a gluten-free diet. My dd had celiac disease symptoms galore, positive Enterolab test results and a positive dietary response. That's all the "diagnosis" that's necessary for us at this point in time. Good luck to you!

Rho

[zarfkitty]

I agree with everything EBsMom said! I also wanted to add that it seems to me that blood is a very changeable substance that is constantly being filtered out and remade. A number of things can change what's in a person's bloodstream at any given moment.

Feces, however, well... unless someone is in the middle of a bout of diarrhea, feces sits there and stagnates at least several hours before it leaves the body. Everything in there would get really concentrated.

My 8 year old is gluten free/casein free and it's totally do-able. Good luck!!

-Shannon

[Juliet]

They are different mainly because they're different tests that look for different digestive and bodily responses.

The blood tests only see if there's a measurable amount of antibodies floating around in the body yet. It is not very accurate for children under 7. Often someone can test negative with the blood test, particularly at your child's age, and be proven positive with a biopsy. It takes awhile before your body produces a lot of antibodies, and by that time, particularly with young children, the affected person can be VERY sick. Generally, the test is only about 85% accurate mainly because of false negatives. It is rare to have a false positive.

Enterolab makes the claim that their fecal tests are more accurate and that they can get positive results at any age, and whether or not someone has had gluten in the past year, too. The problem with Enterolab (and before I make this statement, I want it known that I am not personally discounting them at all) is that many doctors and insurance companies do not think that they're testing is valid. They are still in the process of trying to get the American medical establishment to see their tests as legitimate. IMHO, I think part of the problem with the American medical system accepting them is that Enterolab and the doctor who started it are basically advocating that EVERYONE become gluten free and casein free. That's a pretty hard sell - we Americans don't want to give up any of our food, no matter what they tell us (you should see me with my morning coffee )

That being said, whether you went through Enterolab, Prometheus, or Kimball for the genetic testing, the results from all of these labs would be the same and there isn't any argument. Your child has the most common gene linked with Celiac Disease, HLA-DQ2, subtype 2. Both of my children have this gene and one officially has Celiac Disease and the other has enough issues with gluten that even without the official diagnosis from a doctor (with that on her record it could become difficult to switch insurance later) I treat her as if she has Celiac Disease, too.

So, here's your choices: 1) you know your child definitely is susceptible because she has the gene and has symptoms, so you can go through your doctor and request an endoscopy to complete several biopsies within your child's small intestine and hope that if she does have the disease they find a damaged spot. And even if she doesn't show a positive biopsy, if her symptoms persist, you would put her on a trial gluten free/casein free diet to see if it helps anyway. Or 2) with the positive results from Enterolab and the positive gene test, you can go on a gluten free/casein free diet trial with your daughter (even if your daughter doesn't have a milk/dairy issue, often you want to avoid dairy products for at least the first few months of going gluten free since it takes awhile before the small intestine completely heals and can digest dairy). Either way if you try the diet, you should stick with it for at least a couple of months to see if you have any real results. If your daughter has visible symptoms now, you will most likely see a dramatic change within a few weeks if gluten and/or casein is the problem.

Hope that helps!

[mykidsmommy]

Thanks for the prompt replies - I appreciate it so much.

I know in my heart of hearts that most likely she does have celiac, or at the very least the gluten sensitivity, since there is a diagnosed first cousin on my side with celiac and also the results from Enterolab plus her symptoms.

We are going to go gluten/caisen (sp?) free but in anticipation of all of this I had made an appt with a ped. gastro that is in 2 weeks. I will keep her as she is until then in the event that she wants to repeat the serum blood tests but I think it is pointless to subject my DD to a biopsy when doing the gluten/c free would be the end result anyway. . . and as pointed out if the biopsy is negative, really, so what?? It's the symptoms that are the most telling and the g/c diet wil hopefully resolve them.

Surprisingly my husband has been supportive since we reviewed the enterolab results tonight. I think he also knew in his heart of hearts that something was amiss. Hopefully that support will continue. I think it is hard for him to think that something could be wrong with his DD that he just can't bring a quick fix to and have it all be done with (as opposed to a life-long change). I think we are both somewhat in shock as well. Happy to know it is fixable and what is wrong but overwhelmed with where to start.

Which brings me to my next question before going to bed -

where to start??

Anyone have a 5 point plan on how to tackle this thing? I know there is going to be a lengthly learning curve and it will eventually become second nature but for now, what are the top 5 things that I need to do?

Thanks again!

[gfpaperdoll]

My top five would be:

1. clean out the kitchen - if an only child are you going to have a gluten-free house - the best IMO

2. Buy lunch boxes, thermos, small containers, pyrex glass bowls with plastic lids (Target/Walmart) to freeze meals in so they can then be plopped in the microwave, have many extras of small tupperware containers to pack & go, get a cooler for the car for food shopping & for planned overs from places like PF Changs...

3. Get the book "Kids with celiac disease" by Donna Korn

4. Find the nearest ROCK group (Raising Our Celiac Kids)

5. Make a notebook for the car with all the restaurant gluten-free menus & shopping lists

[mykidsmommy]

Thanks. I already have the book written down to purchase today and everything else seems the smart thing to do.

I have an 11 month old as well and I think we'll be going gluten-free for the household - however at the same time, since they are so young right now it would be easy to do but the real world does not function like this and I want them to learn as they grow up that they have to function within the glutenized world. Especially the older one; we're aiming for preschool next spring. I guess it will all be a learning curve.

You mentioned a cooler for food shopping - does this mean you cannot have packaged products that contain gluten even next to gluten-free free foods??? How subtle is the cross-contaimination??

[EBsMom]

It sounds like a good plan! BTW, my dh had a very hard time accepting that my dd was sick. He accepted that she had an "intolerance" (he's intolerant and had self-selected most of the wheat out of his diet over the years because he realized that it made him feel bad when he ate it) but if I used the word "disease" he freaked out! We had a whopper of an argument back when she first went gluten-free, all because I said she had "celiac disease" instead of gluten intolerance. He's mellowed greatly since then, and he's much more knowledgable now, thank goodness. The funny thing is that even when he objected to my use of the word "disease", he never objected to taking her gluten-free. We were arguing semantics the whole time!

As far as a plan....here's what I'd do. Get a good book to use as a primer - I like Danna Korn's "Living Gluten Free for Dummies." Read the book cover to cover - take notes on what ingredients are safe, which ones are questionable. You'll need those notes when you grocery shop. Then take a look at what your dd eats. If there are things that she MUST have, then look for a gluten-free replacement (for example, Tinkyada brand rice pasta is a great substitute for regular pasta.) On the whole, though, I'd concentrate on feeding her whole foods - veggies, fruits, meats, nuts, etc. Find a few things that she likes and you're comfortable cooking or preparing, and make that your base. You also might want to put her on a gluten-free/cf mulitvite. Keep reading - both books and here on this forum (I spent HOURS reading here when we first went gluten-free.) Slowly, as you feel comfortable, start adding foods into your gluten-free repertoire (as in, baking gluten-free bread or trying gluten-free recipes.) You will find a balance, but it does take a while. It's a steep learning curve at first, but it starts to feel more manageable after a month or two (and maybe some people get a handle on it quicker than I did, lol!)

I decided to take my whole kitchen gluten free (long story, but my ds and I are also gluten free now....gluten intolerance turned out to be a family affair.) That involved replacing some bakewear, purchasing a new cutting board, weeding out and disposing of all the gluten containing food in my fridge and pantry, etc. That whole process is outlined in the Dummies book. You don't have to take your whole house gluten-free, but if not, you need to develop good strategies for preventing cross contamination between the glutenous food and the gluten-free food.

Good luck to you. I know you must feel overwhelmed, but please take heart in knowing that we've all been there, and there *is* a light at the end of the gluten-free tunnel!

Rho

[natalie]

I had testing done from Entrolab, my numbers are in my signature. I always had neg blood work. I had a biopsy done in May and I am Marsh 4 ( completely flat) and the doctor said it is one of the worst cases he has seen, yet neg bloodwork.

[mykidsmommy]

I had testing done from Entrolab, my numbers are in my signature. I always had neg blood work. I had a biopsy done in May and I am Marsh 4 ( completely flat) and the doctor said it is one of the worst cases he has seen, yet neg bloodwork.

Wow, that is scary - i just can't get my mind around how bloodwork could show nothing but i guess that is me just thinking that if blood is drawn, a definitive diagnosis can be made for anything in medicine.

I see in your signature your genetics - my DD's are the same, DQ2 and DQ3, as yours with almost the same subtype - she is 2,7. My question is what are you doing with your son, who is so far negative? I'm wondering whether to just do the gene testing for my 11 month old or just do the celiac blood panel. . . do'nt want pesky insurance problems if they are not necessary. . . just put her on the Gluten-free Casein-free diet since the older DD has a casein issue.

I'm 37 and have no problems but I'm convinced the DQ2 came from my side of the family with a 1st cousin with celiac and an aunt with lupus. my DD's testing said that she has a copy of the gluten sensitivty from both sides - so my husband has something to. Neither one of us has symptoms - he's 42 - and we are free of health problems. I don't know whether to get us tested or not. I'm more concerned about my DDs.

[natalie]

Wow, that is scary - i just can't get my mind around how bloodwork could show nothing but i guess that is me just thinking that if blood is drawn, a definitive diagnosis can be made for anything in medicine.

I see in your signature your genetics - my DD's are the same, DQ2 and DQ3, as yours with almost the same subtype - she is 2,7. My question is what are you doing with your son, who is so far negative? I'm wondering whether to just do the gene testing for my 11 month old or just do the celiac blood panel. . . do'nt want pesky insurance problems if they are not necessary. . . just put her on the Gluten-free Casein-free diet since the older DD has a casein issue.

I'm 37 and have no problems but I'm convinced the DQ2 came from my side of the family with a 1st cousin with celiac and an aunt with lupus. my DD's testing said that she has a copy of the gluten sensitivty from both sides - so my husband has something to. Neither one of us has symptoms - he's 42 - and we are free of health problems. I don't know whether to get us tested or not. I'm more concerned about my DDs.

Sorry it has taken so long to respond, I have been away from the site for a few weeks. Just this past week I decided to order the Entrolab kit for my son. He is so tiny for a 6 year old and given his sisters and my Celiac diagnosis well, I want to see what they come up with. After that I may take those results to my doctor and possibly have him looked at by a GI doctor. I believe that your son would automatically have the DQ2 gene, since you have it , which make him a possible candidate for celiac. My ped doesn't think you should mess around with a child's diet unless you are sure of food issues or diseases. Is is such a tough decision to make. Your daughter's numbers from Entrolab are very high, so she needs a change in diet though. Good luck!