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Why I Chose Enterolabs

Lemonsieur

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Lemonsieur Newbie
Lemonsieur
Posted

Since a lot of folks have questions about them, I figured my first post would by why I went with them.

I started having major diarrhea with alternating constipation in my mid 20's. Docs diagnosed me with IBS and lactose intolerance and sent me home. That diagnosis stuck. I was told to eat more fiber and take a fiber supplement. Of course most of them contained gluten and only made things worse. Early 30's started getting constant left upper abdominal pain and lower back/spinal pressure. Pizza started giving me instant diarrhea. After eating pasta, the next morning's (or the morning after that) bathroom moment would be horrible: I would get that roller coaster feeling you normally get in your gut, but in my bum, and my feet would ache something fierce. I avoided pizza, pasta, and cakes like the plague. I asked my GI about celiac and he looked at me like I was a loon. "That's a European disease!" (I'm black.) He tested for IgA and EmA, both negative. Said I probably had a wheat allergy and I should get tested for food allergies. That was several years ago. I started to avoid wheat/gluten somewhat on my own, and just lived with the stomach and back pain.

Fast forward to this year. I read up on all the things celiac can cause neurologically. My roaming muscle twitching and voice spasms (since 20s) have morphed into upper body myoclonic jerks. I refused the drugs the neurologist was offering. My night terrors (since 20s) had abated but still had occasional sleep paralysis. I was having problems shaking the depression that would sometimes come over me. Usually exercise did wonders, now it did nothing. I decided to rule out food allergies. I got tested for wheat, soy, rye, eggs, oats, milk. All came back negative. So she ordered a celiac panel. Not sure what all tests were actually performed, but she said it was negative. Neither she nor my GI had me do a gluten challenge prior to blood work. I had a endoscopy coming up for bad GERD and asked my GI would he do a biopsy for celiac. "OK OK, I will do a little side show for your wheat allergy" I knew he was lying.

So I decided to give Enterolabs a try. My results:

Fecal Antigliadin IgA 15

Fecal Antitissue Transglutaminase IgA 26 Units

Quantitative Microscopic Fecal Fat Score 355 Units

Fecal anti-casein (cow's milk) IgA antibody 17 Units

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Fecal anti-ovalbumin (chicken egg) IgA antibody 26 Units

Fecal Anti-Soy IgA 32 Units

I expected the gluten, but the casein, soy, and egg caught me by surprise. I was eating those just about *every* day! So I eliminated all those things as best I could. There were and still are slip ups.

It has been 10 weeks. I have lost 20lbs. I have been trying for years to lose just 10-20 lbs and could never do it! And I am an exercise nut! I most likely will be able to come off my hypertension meds. My stomach and back pain are gone. My reflux is much improved. Muscle twitching and voice spasms are gone. Myoclonic jerks few and far between. I CAN SLEEP! Migraines are gone.

In doing some research I am pretty sure I have had a gluten problem all my life. My mother was told I had a wheat and milk "allergy" as a kid, but since I didn't seem to react most people ignored the warning and fed whatever they wanted. The result: seizures until I was 5, migraines until recently, vomiting and constipation until late teens, terribly aching feet until recently. Always getting blisters on my lips and the corners of my mouth. I am the runt of the family. I was under 5' until about 16. You get the picture.

OK OK I am done! Please forgive me for the length. That was cathartic(sp?)! :huh::blink:

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mftnchn Explorer
mftnchn
Posted

What a misguided GI! That was so disrespectful.

Glad you took things into your own hands, and are improving so well. Welcome to this forum!

Lemonsieur Newbie
Lemonsieur
Posted
  • Author
Glad you took things into your own hands, and are improving so well. Welcome to this forum!

Me too! ;) Thanks so much for the welcome! :D

Gentleheart Enthusiast
Gentleheart
Posted

Welcome to the board! I appreciated how well and concise you stated your history. Great job! Neurological celiac is difficult to track down. I am a big fan of Enterolab. There have been so many people who were misdiagnosed and miserable until they discovered Enterolab.

Lemonsieur Newbie
Lemonsieur
Posted
  • Author
Welcome to the board! I appreciated how well and concise you stated your history. Great job! Neurological celiac is difficult to track down. I am a big fan of Enterolab. There have been so many people who were misdiagnosed and miserable until they discovered Enterolab.

Thank you Gentleheart. I needed to get it all out, but didn't want people to go OMG I don't want to read all that! I just hoped I struck a good balance. I also wanted to explain the why's and how's Enterolabs testing was useful to me.

AndreaB Contributor
AndreaB
Posted

So glad you got some answers.

Did you know soy can cause joint pain as well?

SunnyDyRain Enthusiast
SunnyDyRain
Posted
Thank you Gentleheart. I needed to get it all out, but didn't want people to go OMG I don't want to read all that! I just hoped I struck a good balance. I also wanted to explain the why's and how's Enterolabs testing was useful to me.

Welcome!

I always love to hear diagnosis stories... because it continues to amaze me that it's not tested for more. It also amazes me so many people would rather be sick than know!

I still battle some discrimination from some people who say "You can't have celiac, your overweight!" This disease manifest in many ways in many different types of people. I think as more people get diagnosed the "skinny white person disease" stereotype will be blown out of the water. Especially if we start testing poor inner city populations who are neglected when it comes to health care. I'm afraid to think about how many people are undiagnosed and uninsured. I was lucky to be insured my entire life, and it still took me 10 years for a DX!

Anyway that was my healthcare rant, i'll get off my soapbox now!

:ph34r:

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sixtytwo Apprentice
sixtytwo
Posted

Sure do hope that lots of people read your story, it is a good one. Although not as dramatic, I ended up finding out that I should not be eating gluten through Enterolab and feel it was the best money I could have spent. There still are people out there that are stuck on the standard medical people and will not think outside the box and use Enterolab. Dr. Fine will one day be respected by all doctors as being way ahead of his time on this subject, and I would imagine by some of the smarter ones he already is. There are a lot of dumb doctors out there. If they didn't think of it, they it couldn't possibly be so. Barbara

Lemonsieur Newbie
Lemonsieur
Posted
  • Author
So glad you got some answers.

Did you know soy can cause joint pain as well?

No, but I am not surprised. I know it can cause heartburn! :(

Lemonsieur Newbie
Lemonsieur
Posted
  • Author
Sure do hope that lots of people read your story, it is a good one. Although not as dramatic, I ended up finding out that I should not be eating gluten through Enterolab and feel it was the best money I could have spent. There still are people out there that are stuck on the standard medical people and will not think outside the box and use Enterolab. Dr. Fine will one day be respected by all doctors as being way ahead of his time on this subject, and I would imagine by some of the smarter ones he already is. There are a lot of dumb doctors out there. If they didn't think of it, they it couldn't possibly be so. Barbara

I could not agree more! My take is I am not looking for a doctor to lead me to good health. I am looking for one to help me make informed decisions. If the doctor is not informed, how the heck are they going to help me?

Lemonsieur Newbie
Lemonsieur
Posted
  • Author
Welcome!

I always love to hear diagnosis stories... because it continues to amaze me that it's not tested for more. It also amazes me so many people would rather be sick than know!

Righteous Rant snipped

Ignorance is bliss. I don't necessarily understand it either.

You know you are just around the corner from me. Have you ever participated in any of the Harrisburg GIG meetings? I have never attended one, but was wondering how they were.

SunnyDyRain Enthusiast
SunnyDyRain
Posted
Ignorance is bliss. I don't necessarily understand it either.

You know you are just around the corner from me. Have you ever participated in any of the Harrisburg GIG meetings? I have never attended one, but was wondering how they were.

I know a woman who went to them a few times when first diagnosed. She says they have a good "just diagnosed" workshop or something. I saw it listed, but I had just missed it. I have gone to a gluten free "class" at the camp hill Giant. It was before I was gluten-free, but I was sure that I had celiac (in my gut...not by docs). I liked seeing the products they carried, it made me more willing to get tested and gluten-free when I knew going in there were products to replace the wheat I'd be missing.

I have thought about going, but I look and they don't seem to meet too often, or it conflicts with my schedule.

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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