Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Why I Chose Enterolabs

Lemonsieur

Recommended Posts

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:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.