Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,116
    • Most Online (within 30 mins)
      7,748
    SierraQ
    Newest Member
    SierraQ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Soleihey
      Gluten Ataxia and Malabsorption

      By Soleihey · Posted

      I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 
    • Erain
      Orgain Protein Powder

      By Erain · Posted

      Here’s the answer from the company 😊   Hi Emily,    Thank you for reaching out to us! We can confirm the Organic Protein + 50 Superfoods Powder is gluten free. The organic barley and wheatgrasses we use are harvested prior to jointing, before the grain forms and any gluten protein is present. Rest assured appropriate measures are taken to ensure our gluten free products comply with the FDA final rule to be labeled as gluten free, as claimed on the side-panel label. Our suppliers are required to verify each ingredient and in order to ensure that our gluten free products comply with the FDA requirements, our manufacturing facilities use the ELISA test method to confirm gluten levels are less than the standard limit of <20 ppm.    If you have allergy concerns about consuming the grasses, we recommend consulting further with your healthcare provider. I hope this information helps! Please let us know if you have other questions.   
    • Erain
      Orgain Protein Powder

      By Erain · Posted

      That’s great to know. Thanks Scott
    • trents
      Postponing seeking a diagnosis?

      By trents · Posted

      Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.
    • kim-d
      Postponing seeking a diagnosis?

      By kim-d · Posted

      Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS.  I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure.  First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over.  I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result.  I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?
×
×
  • Create New...