Enterolab Gene Test

[Teresa Dean]

I think I read on the forum when I joined about Enterolab but I may have read about Enterolab just looking over the internet.  My nephew is 28 and after YEARS of skin issues, gut issues and RA diagnosis in middle school not one doctor he ever went to ever tested him for celiac disease.  He moved to a new area and had a new general practitioner and went for a routine check up.  This brilliant doctor (and I’m totally serious) she has to be BRILLIANT!!!! She doing a routine check of his body and noticed his skin.  She asked him if the rash that he has dealt with for YEARS (most all his life) was it recent and he told her no and described how it was at other times and often his face too. She said she suspected he had celiac disease…. She sent him to the lab for more blood work and did a skin scrape.  He went back 2 other visits for tests. Every single test was positive for Celiac.  Since celiac can often be genetic.  I feel I must be tested at least for starters for Celiac disease.  I have microscopic colitis and was FINALLY diagnosed in January 2023 after 5 months of misery and my GI that like any doctor I see I do not bother unless I need to until they send me reminders for follow up test for routine appointments.  Way to busy are all doctors and way too few practices or groups seem to care and often blow you off (whoever you are) and it’s no urgent issue for them because you are only one patient of patient overload and you take the next appointment and wait.  Anyway…. August 2022 my MC symptoms began suddenly and I suspected anxiety but ever day I was worse.  I called my GI group that I have always been to after a week or so and I took the first available appointment…. October 26, 2022. Wow that appointment day was a long wait…… I called and asked to be put on a cancellation list and was told we don’t have one…..so I waited….. but continued to get worse every day.  Finally appointment day came…..q & a plus stool samples. Colonoscopy scheduled for December 13, 2022.  I never dreamed I could get worse but I did by the day….Homebound….even homebound was not close enough to the bathroom 24/7.  I called and called no point until I called and asked for the office manager. She got me in for a colonoscopy almost a month sooner November 2022 (as a matter of fact) it happens that today (day before Thanksgiving 2022) she had a cancellation and I went….. THANKFULLY and GRATEFULLY!!!!! Dx confirmed January 3, 2023.  I am now 65 since October 2023. By January 2023 I had lost 40 pounds and I have leveled off it seems and my weight loss is 45 pounds less.  I’m very very thin!!!
Since my nephew  was diagnosed with celiac I have studied it since so many of my symptoms are so familiar.  Plus I read that when a patient has MC it is likely a person can develop celiac or if you have celiac you can develop MC. I also read…. That your GI should test for celiac if you have MC.  I never once had a test or a mention of celiac.  I didn’t know about any kind of colitis (except to have heard the word colitis), I didn’t know a thing about celiac and had hardly ever heard that word either.  Had my nephew not been diagnosed about a month ago now with celiac disease I never would have thought a thing about celiac disease. But I have thought, read, joined celiac.com forum and I can’t believe that my nephew after basically 25 years of his 28 that no doctor, dermatologist ever tested him for celiac!!!  Now after what I’ve read about MC and that people with MC should be tested for celiac I just cannot believe that my GI didn’t test me for celiac, but he didn’t and never said the word celiac and I never looked up celiac because why would I…. I had no idea that celiac could be related to MC. 
I know now and I at least feel like I need to do a gene test and if it is positive I should seek further to find out if I do have celiac or not….. it only makes sense to me, knowing what I know now. 
is anyone familiar with Enterolab? If anyone is does anyone recommend a gene test from them that can be done at home and IF a gene test is positive for the gene…. Then I can call my GI or better yet…… call my nephews truly brilliant GP and see her to be tested for celiac…..  I really feel that my GI has done what is the normal thing to do to treat MC and when I last saw him May 8, 2023, he said he would see me in 10 years (after I asked when do I come back) ….. I was at my 3rd follow up since diagnosed confirmed January 2, 2023. 
No food suggestions were ever given. Only to figure out what works for me because their is no definitive answer to what causes MC. I was told a few of the suspected causes but nothing more. Only the Budesonide that was prescribed to improve the symptoms, no matter the symptoms I had were like many I have read….. beyond unbelievable…. And continued weight loss, skin issues, mouth ulcers and hair loss. I ate bland and still do.  I fear to eat so much that I only eat what I feel seems to “work” for me.  I finally went into remission in July 2023……. But about a month ago I was going to the bathroom again…. NOTHING like I had before the treatment with Budesonide and Cholestyramine but enough that I felt I should take the Budesonide in case the symptoms continued to worsen.  I took 2 pills verses 3 and have weaned to 1 now. I’m better. Thank Goodness!!!!!  Can anyone tell me what you have experienced with celiac and possibly MC.  Does anyone suggest the gene test or what? I know how to treat MC and I know what seems to work for the most part with the few foods I eat….. I try foods “outside the box” some I have tried ….. it doesn’t take long after the ones that need to stay out of my box to figure out….. so I basically stick to what seems to “work” for me.  I mentioned the gene test from Enterolab after reading their website…..plus I’ve thought I’d go to my nephews doctor.  I feel if I called my Gi …… 1. An appointment would take who knows how long 2. To see him and ask to be tested for celiac, he’d laugh me out the door.  I’m thankful he did the colonoscopy with biopsies to test under a microscope for MC.  But because MC is rare and the reasons are unclear that my GI doesn’t see the need for anything more except to treat flare ups.  I truly don’t know if what I am down to 1 Budesonide was a flare up or one coming on…… but it hasn’t hurt to take what I have.  I’ve had no more dashes to the bathroom after the first week I started taking 2.  Although it’s been this long it’s still new for me and I don’t know what a flare up is since my MC was beyond unbelievable before I was diagnosed.  Any suggestions from the celiac community I appreciate……
 

 

 

[Scott Adams]

If you have first degree relatives with celiac disease, then you should also be screened for it, as some studies have shown that 44% of first degree relatives also may have celiac disease. It's too bad they did not also do an endoscopy for celiac disease with the colonoscopy.

This article may be helpful:

This article might also be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

I've heard of Enterolab and they can do stool, blood and gene testing for celiac disease.