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Can Anyone Tell Me What They Know About Enterolab Testing?


TammyK

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TammyK Apprentice

Does this lab actually dx Celiac Disease? Or does it merely tell you if you are gluten sensative? I read discussion after discussion about biopsys. Can you find out you have Celiac Disease before your intestines are damaged? Is gluten sensativity merely a precursor Celiac?

Ok, I know that is a string of questions but I really am confused about this. My daughter has had a long time issue with wheat. I switched her to spelt and that lasted a few years until seizures and migraines appeared. Taking her off gluten proved to be the trick. She has no gut issues like bloating, gas, cramps, etc... We did have blood work done for Celiac but that was after she was on the gluten-free diet for a couple of weeks or so. It was negative. I am trying to decide how important further testing at EnteroLab is. If all it will tell me is that she is sensative, then we can just save the money.

What do you think?


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mftnchn Explorer

Enterolab does not claim to diagnose celiac; it does pick up gluten sensitivty and says that they can do so for up to a year after going gluten-free. Whether gluten sensitivity is a precursor to celiac is a matter of discussion. However, gluten sensitivity seems to occur for more reasons that just celiac. It is particularly hard to digest so if your gut is compromised it can be a problem. Resolving the underlying issue can resolve the gluten sensitivity for some people, but not for celiacs.

Celiac can be asymptomatic, and can have negative blood and biopsies.

Since you are convinced she is better on the gluten-free diet, I wonder what you hope to gain from Enterolab?

TammyK Apprentice
Since you are convinced she is better on the gluten-free diet, I wonder what you hope to gain from Enterolab?

Ok - that makes so much more sense!

As for what can be gained from Enterolab, there is a full panel that includes more than the gluten-sensativity test but a malabsorption test, antibody test, gene test (for Celiac? Anyone know?), milk sensativity and more. Guess I still don't if any well be helpful, except that I feel the gluten-sensative one is unnecessary for me and I know diary purposed problems as well. But malabsorption and gene testing???

I am trying to decide if Celiac should be further considered or if I think it is a gut problem. She did have abdominal cramps and diarrhea her first 1-2 years of life but those did go away with eliminating diary. We have randomly reintroduced diary and she has never went back to any of those symptoms. She had been treated long term for chronic ear infections (antibiotics), having her first set of tubes put in at 6 months old (and several sets since). Then at 6, she was dx with Asthma. It is sounding to me to be the leaky gut thing but then there is the fact that I cannot eat gluten, eggs or oats without itching and rash and in the past few years was dx with 2 autoimmune diseases. That makes me think more Celiac due to the hereditary factor. Ugh... Wish this was easier to figure out.

I don't want to learn in 10 years it was really Celiac after all. Knowing seems important because Celiacs have to be so careful. I have a family of six and do have gluten in the kitchen and all around her. Knowing it was Celiac would mean changing everyone's diet, cleaning up the kithcen, being resolved for the long haul and teaching and preparing her for her adult life - how she will approach her health.

Unfornately it has taken this mama too long to read the writing in the sky. I am just now up to full speed on understanding that it really was gluten all along (not just wheat) and that she never should have been reintroduced to diary. It took seizures and migraines to wake me up. Thank God, our bodies take dramatic means to communicate with us.

Does anyone have any thoughts on this?

fedora Enthusiast

they do a gene test. It is a reliable test that can tell you if she has the main genes for celiac. About 94% of celiacs have on of those two genes. Doctors can order gene testing too that her insurance might cover.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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