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Enterolab Strikes Again- Twice!

Veronica2

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Veronica2 Newbie
Veronica2
Posted

Today we just got Enterolab fecal anti-gliaden IgA gluten-sensitivity results for two of our daughters.

We had them tested because I was positive last summer (12, normal is <10) and my husband's also came back positive; a 13. I am the only family member who had symptoms.

One daughter had a result of 30 Units (Normal Range <10 Units), and the other 14.

My question is:

Does ANYONE know of anyone who has had this test come back negative? I'm really getting suspicious! It seems so random. I guess the best way to find out definitively is to get genetic testing of some sort, but we will have to wait until we have the money (it's not covered by our insurance).

For now, we've chosen the cheapest $99 test they offer, which is the stool sensitivity test. I am just having doubts that it's accurate!

Thanks for any advice.

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Lisa Mentor
Lisa
Posted

According to my understanding, testing for the HLA-DQ can tell you that you MIGHT at sometime develop a variety of autoimmune diseases, such as Celiac. Although it can be a piece of the puzzle.

If you do not carry the HLA-DQ genes, you cannot develop Celiac.

Do your children have symptoms? You may have mentioned it, but I can't recall.

Genetic testing for celiac disease:

Celiac disease is a multigenic disorder associated with HLA-DQ2 (DQA1*05/DQB1*02) or DQ8 (DQA1*0301/DQB1*0302). HLA DQ2 is expressed in the majority (>90%) of those with celiac disease and DQ8 in about 8%. The expression of these HLA-DQ2 or DQ8 molecules is necessary but not sufficient to develop celiac disease and accounts for only about 50% of the genetic component of the disease. Studies in sibling (sib recurrence risk for celiac disease of 10%) [42] and of identical twins (concordance of 70%) [43] suggest that the contribution of HLA genes in celiac disease is less than 50%. The determination of the presence of HLA DQ2 or DQ8 is now available commercially. The role in the diagnosis of celiac disease is however limited because of the low specificity of the test for celiac disease. These HLA types are present in about 30% of the normal population. Their absence is useful in excluding celiac disease. The role in assessment of the presence of HLA DQ2 or is: 1. In the presence of an equivocal biopsy, 2. When someone is already on the diet, 3. To determine which family members should be screened for celiac disease.

MaryJones2 Enthusiast
MaryJones2
Posted
Does ANYONE know of anyone who has had this test come back negative?

Yes, there are several members here who tested negative through Enterolab. I personally think there is value in Enterolab. I also think there are ways to arrive at a diagnosis using other testing methods so it's really about what works for you and your family (and your wallet).

lonewolf Collaborator
lonewolf
Posted

My son tested negative.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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