New - Daughter's Enterolab Results

[chemom]

I am new here. I wanted to post my oldest daughter's Enterolab results. She is 17 1/2. She has been seeing a local nurse practitioner since the Fall and is only being treated so far for her adrenal fatigue (she takes 30 mg. of HC daily.) We have a family history of Hashi's, so she has finally been tested for both Tg and TPO antibodies, but we're waiting on those results. Her biggest problems right now are serious fatigue, difficulty falling and staying asleep, and severe muscle pain all over. I can't even hug her anymore because it hurts. The muscles pain started back in the Spring after the NP put her on the Pill to help with PMS, but it only made that worse too, so she stopped taking if after 3 months. I personally think the PMS is related to hypothyroidism/Hashi's because her Free T3 and Free T4 are both too low. She does have GI problems too. She alternates between diarrhea and constipation. So I decided to have her and my husband tested (we just can't afford to test the whole family - we have 5 children.) My plan now, after getting the Entero. results, is to make the whole family gluten free. I think some of the other children may have gluten issues. Anyway, here are Kate's results. I would appreciate any feedback or help. Thank you.

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

Fecal Anti-gliadin IgA 95 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 23 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 551 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow

[Skylark]

Hi there. Please, please, please don't take your daughter off gluten until she's had a proper medical workup for celiac disease. Something is going on with her but Enterolab tests are NOT diagnostic. They cannot discriminate between Chron's, microscopic colitis, other inflammatory bowel diseases, and celiac. With her genotype, she is at relatively low risk for celiac, so you need to be absolutely sure she doesn't have an inflammatory bowel disease. She needs to get to a GI doc, preferably a good one. Keep her on gluten until she's had the celiac panel and endoscopy if one is needed, as the tests will be negative if she goes gluten-free.

[Skylark]

I should add that once she's had the medical workup, try her gluten-free even if she doesn't meet a GI doc's definition of celiac. With those results she is very likely to feel better off gluten. It's just that you want to be sure what's going on first.

[ravenwoodglass]

Do take her in for a celiac panel and if you choose to a biopsy. There are false negative rates that are pretty high for both so after you are done with all testing you choose to do make sure you give the diet a good strict try.

Celiac is strongly genetic so if one member has it confirmed then all family members should be tested whether they have symptoms or not.

[Gardening]

I'm still waiting for Enterolab results for three of us (should be coming today - I keep hitting "refresh" "refresh" like a pathetic person).

I will tell you that for reasons yet fully known, my older daughter has malabsorption problems. We took her to a nutritionist for biomedical intervention for a slew of issues, and she came back with many vitamin deficiencies, some rock bottom, despite a pretty good diet.

Whatever is going on with your daughter, you might have her vitamin and mineral levels checked - as many as the doc will test for - my daughter was frankly deficient in 6 and borderline in many others. It doesn't sounds like her digestion is doing what it should.

If you happen to have Aetna insurance, they will pay for Spectracell, which is a very good functional assessment of vitamins.

Good luck!

[Skylark]

...nevermind...

[ravenwoodglass]

How rude. Someone votes a post down because I suggest someone take a child with GI issues to a doctor to rule out inflammatory bowel disease based on test results that were DESIGNED to test for inflammatory bowel diseases?

If you're going to take issue with what I post, do it to my face. Not with your petty little vote button.

Keep in mind that sometimes people mean to vote up and hit the wrong button by accident. Once done the person can't undo it. I don't think anyone disagrees that she should see a GI.

[Skylark]

Oooohhhhh. I didn't think about that.

Dang it, I'm not as foggy today but obviously I'm on the irritable side. I'm having yeast problems after an antibiotic and I think it's affecting my whole body. I avoid antibiotics but this particular one was very necessary.

[nora-n]

About the gene test, DQ6 and DQ7, I ahve a reference that says that in sicily or somewhere, they found several DQ7 celiacs.

Hre we have had some people with symptoms and DQ7.

If you check the DQ charts at the wikipedia page for HLA DQ, you see that DQ7 actually ofteh have half the DQ2 gene, they have the 05* alpha chain.

But they will be less celiac prone than those with the full DQ2 gene.

One person posted here with such a half gene, and she had mild villous blunting visible in video capsule endoscopy. A biopsy would probably miss that.

[Skylark]

Isn't the DQ7 beta chain strongly linked to the 05* alpha so you can get trans-DQ2.5? But there are celiacs with DQ5, DQ6, and DQ9 around here as well.

If you look at risk, people who are one of the DQ1 or DQ3 subtypes have very similar risks of other GI diseases as well as celiac, and anti-gliadin antibodies can occasionally come up positive in things like Crohn's. I wish Enterolab did anti-EMA as well. Kind of silly that they don't.

[nora-n]

There are some articles out there that point out that the 05* alpha chain in DQ7 is half a DQ2,5 and there is a risk for celiac, officially.

I hate that Enterolab does not mention this.

It even says that it looks like the 05* alpha chain contributes more to celiac than the 0201 beta chain, I seem to remember that clearly. But I think those bookmarks are on my other google bookmark account which is huge and it might take some time to go throgh those bookmarks.

That is why most reputable labs now also do the alpha chains.

[smallv]

I found this forum as part of a Google search. My wife's is concerned about gluten intolerance and wanted to get the $369 test from EnteroLabs. We agree to consult on such expenditures. For your interest, my findings and conclusions are as follows:

EnteroLabs appears to be the only lab offering analysis of stool samples. All other labs offer testing of blood samples or tissue samples.

Other Labs test for gluten intolerance using a two sets of tests. The first is a baseline, usually taken after a period of low gluten intake. The second is taken after re-introducing of gluten. If the immune response serum indicators go up, there is a conclusion of gluten insensitivity.

EnteroLabs claims to be able to determine gluten insensitivity with a single test (no baseline). This strikes me as questionable. EnteroLabs claims to test for antibodies. However, antibodies may be generated in response to any infection, irritant or allergen. Different people produce different levels of antibodies in response to any irritant. EnteroLabs own FAQ page acknowledged this:

"How much antibody is produced at the stimulus of T cells differs in different people." (Open Original Shared Link)

Without a baseline that compares an individual

[ravenwoodglass]

"

So I have three questions:

1) If 81% of tests are going to be positive, why would I pay almost $400 for the test.

2) I also question how a stool sample can be a contamination free source for genetic testing. Stool contains the genetic material of everything we eat.

3) Genetic tests only indicate predisposition, not the presence of gluten intolerance. So if 81% are predisposed -- and being predisposed does not mean that the test subject is actually gluten intolerant, then why pay for a test that is by definition -- inconclusive."

First off I am going to say I was not 'diagnosed' by Enterolab. I did testing after I had been diagnosed for 5 years mostly to find out what genes I carried as my DD who had been diagnosed by blood test and biopsy was told after her genes were tested that she could never be celiac as she didn't have the genes.

The antibodies they are looking for are gliadin antibodies that are specific to celiac. These can also be found in the blood work of many celiacs when a doctor does a celiac panel but some celiacs do have a false negative. The figure is up to 20% and can delay diagnosis by many years, for me it delayed diagnosis by 15 years as doctors would look at the false negative tests and consider them to be absolute proof I didn't have celiac but no doctor would endo or even told me what they were testing for. They just told me the tests were negative and I was sent on my way to neurologists, rheumatologists, GI doctors, GYNs and so on.

Because some of us, the NIH estimates that 20%, do have false negatives on testing by regular labs, some do choose to do Enterolab testing. For some it helps them to have a piece of paper that supports their own experiences on the diet. For others it can give the impetus to give the diet a good strict try. Enterolab does NOT diagnose celiac or gluten intolerance they simply tell folks if they are making antibodies to gluten. For some it is a helpful part of the diagnostic process.

As far as the gene testing is concerned that is done in the usual way, with a cheek swab not from the stool sample.

It is true that a large number of people carry the genes that are associated with celiac and there are folks who never develop the condition. However most who are going to their doctor or through Enterolab are having symptoms and looking for answers and while genetic testing is not conclusive proof of celiac it can be part of the puzzle.

Your first step should always be testing with your GP or GI with the conventional tests, IMHO. However even with those it is advised to try the diet strictly no matter what the test results are.