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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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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