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

Enterolab


Lissa

Recommended Posts

Lissa Apprentice

Hi all.

These past few days have been horrible as my mother is unsure about my gluten issues. She's not sure that it's my problem because I am still sick ocassionally (after I eat a food containing gluten and I was unaware). She keeps saying, well how do we know that it's not lactose intolerance? Or just your eating habits? (which I must admit, suck. I love chips and foods filled with fat. I've been working on getting a more balanced diet, but I rarely have time to cook food, so its usually more chips and a banana for lunch) Or that it's Crohns? I've had a awesome response to the gluten free diet, but my mom is now thinking I've convinced myself that it's a problem with gluten when it's probably not.

My mom was the one who brought up the idea that it was probably relating to gluten! And brought me home magazine articles that convinced me!

And I know you are all probably saying, well, if you had a positive dietary response to gluten free, then you obviously have a problem with gluten. Well, I still have had D. Not in a pattern, sometimes I'll go for 3 weeks without it, and sometimes I'll get it twice in a week. It's just that my mom has lots of experience in the bowel area, given that she has Crohns. And has been through hell with it. So she knows poop.

Anyways, she really wants to know what's wrong with me, and I would as well. So I was telling her about Enterolab and the Celiac Gene Testing. We would like more information so that we can get on with our lives. So my questions about Enterolab are:

1) How much is it?

2) What kind of tests are they? And what do they involve?

3) Can Canadians be tested?

4) Is it worth it if I'm pretty sure I'm only gluten intolerant, rather than Celiac? (No one in my family has Celiac, however, my mother and great grandmother both had Crohns. My grandmother was developing Crohns in the short years before her death, but it was determined that it was from her undersized bowels from her premature birth)

If you can help me with any of this, I'd greatly appreciate it.

Thanks so much,

-Lissa


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



Celiac.com Sponsor (A8-M):



horsegirl Enthusiast

Hi Lissa,

You can go to their website at:

Open Original Shared Link

There, you can check out information about all the tests they provide, how much they cost, etc.

I was even able to convince my insurance company (in the States) to pay for the test! :D

I think it's definitely worth your effort to go through their testing, because they do the gene testing as well as test for gluten antigens & other things (depending on what tests you order).

Your symptoms may be celiac, or gluten intolerance, but as I've learned from my own recent trials with all of this, it doesn't really matter what the end "title" is, as long as you find something that helps you feel better!

Also, getting in touch with a good G.I. doctor would be great too, in order to have blood tests done, & possibly a biopsy to see what might be going on (that would tell you whether it might be Crohn's,

celiac, or other problems).

Whatever the case, it sounds like you've had a good response to the gluten free diet, & maybe there's other food intolerances you might have too.

As far as family members "not having Celiac", remember that most people are never diagnosed accurately, & that Celiac masquerades as a whole host of other physical & psychological problems,

so somebody in your family may HAVE been Celiac or gluten intolerant, but only showed up as having migraines, or arthritis, or fibromyalgia or something like that.

Good luck, & keep us posted on what you find out!

Martha

gffamily Rookie

Lissa,

You mentioned that you still get d. My daughter is gluten free, but whenever we have tried to give her potato chips she gets sick. I can't figure out why, maybe they run on the same lines as wheat products or something. We've had to switch to tortilla chips, and then we have to be careful about the brand. (We buy "Nana's Cocina" at Whole Foods. We cannot buy "Green Mountain" which says gluten-free right on the package!)

(My husband and I are also gluten free, but do not react the same way my daughter does.)

Maybe the chips are getting you??? I'm sorry, I know you said you love them :(

dally099 Contributor
Lissa,

You mentioned that you still get d. My daughter is gluten free, but whenever we have tried to give her potato chips she gets sick. I can't figure out why, maybe they run on the same lines as wheat products or something. We've had to switch to tortilla chips, and then we have to be careful about the brand. (We buy "Nana's Cocina" at Whole Foods. We cannot buy "Green Mountain" which says gluten-free right on the package!)

(My husband and I are also gluten free, but do not react the same way my daughter does.)

Maybe the chips are getting you??? I'm sorry, I know you said you love them :(

hi, it may be something else in the chips bugging you, im allergic to soy so i only have a few choices of chips that i can eat as most of them use soybean oil. enterolab can test you for soy, casein etc.

GOOD LUCK

gffamily Rookie
hi, it may be something else in the chips bugging you, im allergic to soy so i only have a few choices of chips that i can eat as most of them use soybean oil. enterolab can test you for soy, casein etc.

GOOD LUCK

Thanks! My daughter DOES have a problem with soy, but I never thought about that with the chips because the nutritionist told us not to worry about soy oil or lecithin.

I wonder if she IS reacting to those? Do you have reactions to soy lecithin too? What brands of chips do you buy?

hathor Contributor
4) Is it worth it if I'm pretty sure I'm only gluten intolerant, rather than Celiac?

Well, Enterolab doesn't even diagnose celiac; it diagnoses gluten intolerance. You can get the genetic testing in addition to the intolerance tests, but this just tells you if you have the identified genes for celiac. Not everyone with the genes has problems, and people can have severe problems with gluten without the genes.

If you wonder if you are reacting to casein (or egg, soy, & yeast) in addition to gluten, you can test these through Enterolab as well. Or you can just cut out dairy or whatever and see how it goes.

You don't mention how long you've been gluten-free. I've read that many people have problems with lactose when they first go gluten-free. They have to let their gut heal and then find they may be able to tolerate it in six months or so. (It is easy enough to see if you are reacting to lactose or casein, which are different things.)

It can take some time to heal. This could explain why you still have bouts of diarrhea. Or you could be getting bits of gluten from some unnoticed source. You have to look at your personal care items (I just discovered wheat in my hair gel), toss out scratched pots, spoons, or the like that have been used with glutened food, make sure nobody is getting glutened crumbs in anything you eat (like PB or anything else a knife with crumbs might go in), etc. I assume you carefully read all labels and are not eating oats?

It is a bother, but you might benefit from keeping a food diary. If you always get sick after eating a certain food, you may discover another intolerance or a brand that is cross-contaminated.

I hope you get feeling better.

Ursa Major Collaborator
Also, getting in touch with a good G.I. doctor would be great too, in order to have blood tests done, & possibly a biopsy to see what might be going on (that would tell you whether it might be Crohn's,

celiac, or other problems).

I just want to add that this is NOT good advice, because at this point, because of being gluten-free for a while, it is absolutely TOO LATE to have blood tests and a biopsy done. They will all be negative by now!

By the way, all people with Crohn's have been shown to benefit from a gluten-free diet. I bet your mother is gluten intolerant as well. She might want to try a gluten-free diet herself, rather than doubting you!


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Just wanted to say that yes, your Mother & Grandmother's crohns disease is probably just untreated celiac. I have posted about a lady that is now in our group that thought she had crohns & then I convinced her to get the test at Enterolab.com & she had a DQ2 & a DQ8 & was positive for gluten & dairy. She went gluten free & she said about day 4 she felt like a new person. she was thanking me for prodding her to get the test, although she is a vet & worked with another vet that has celiac & even went into the gluten free cake & cookie business after she got so good from baking the gluten-free office cakes - she had never gotten tested, because she had a Diagnosis of crohn's...

Archived

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

  • 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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.