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Validity Of Stool Test?

scooper

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scooper Rookie
scooper
Posted

My two daughters were diagnosed with Celiac this year with blood tests and intestinal biopsies. The rest of the family tested negative on the blood test so the doctors said not to worry about gluten. However, we tested my husband and myself with the stool test through Entero Lab at www.enterolab.com and our results came back positive for gluten sensitivity.

Who do we trust - the doctors or the stool test results? My husband has symptoms for gluten sensitivity but I don't (at least none I know of).

The doctor said the stool test is not reliable.

Any experience with the validity of the test?

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ShayFL Enthusiast
ShayFL
Posted

Doctors are always resistant to anything new or unpublished. Dont forget it wasnt that long ago that Cigarettes were "just what the doctor ordered". That's right doctors used to prescribe cigarettes. They know a lot, but they dont know everything.

I believe Enterolab to be reliable and I know MANY in here will agree. I did a genetic test also with Enterolab and with Kimball Labs. The were consistent. Kimball is used by doctors.

THE MOST RELIABLE THING IS......POSITIVE RESPONSE TO THE DIET. Hands down this is the single best way to determine gluten intolerance. It doesnt dx Celiac, but leaves no doubt about gluten.

There are quite a few people who didnt think they had symptoms related to gluten, but when they went on the diet were amazed. Oh....those brittle fingernails are gone. Or I no longer get zits right before my period. In my case, I no longer get migraines mid cycle or before my period. I thought that was just hormonal. Well it was because the gluten was messing up my hormones.

If it were me and mine, I would make the WHOLE family gluten-free. First of all it is way easier considering both your daughters have Celiac to prepare meals that everyone can eat. PLUS there will be no worries about CC (cross contamination). Secondly, it is a VERY HEALTHY diet if you include lots of veggies, lean meats, fruits and other whole grains like brown rice.

And you can just watch everyone get better.

Make sure you kitchen is gluten-free. Old scratched Teflon must go, old wooden spoons and cutting boards too. A new toaster is in order. Clean out the pantry, fridge and freezer. Stock it up with healthy gluten-free items.

Your home should be the one place your girls can feel safe. So taking the whole family gluten-free would create this haven for them.

They got the genes from one of you or both. So if your DH is showing signs of gluten sensitivity already, it might be the beginnings of Celiac. Too early for it to show up on bloodwork or biopsy, but not too early for it to be causing damage and symptoms.

Lisa Mentor
Lisa
Posted

Currently the Celiac Disease Foundation and Celiac Sprue Association do not recognize stool testing as a legitimate means of diagnoses.

Some people here have been satisfied with their result from Enterolabs. Enterolabs can show sensitivity, but they cannot diagnose for Celiac Disease.

Your daughters tested positive, therefore you or your husband (or both) carry the gene. Not all blood works is accurate. Testing can rule Celiac in, but it cannot rule it out.

leadmeastray88 Contributor
leadmeastray88
Posted

I had the Enterolab testing done and my results were positive as well.

I had a negative tTG blood test prior so when the GI refused to scope me, I had no other option.

Enterolab supported what my doctor and I believed already to be true - that I had a problem with gluten. Whether it is Celiac or just gluten sensitivity/intolerance doesn't matter, the treatment is the same. And I have had amazing results.

fedora Enthusiast
fedora
Posted

my enterolab test was positive, my diet results supported it.

My daughter's test were negative, so they do not always come back positive.

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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