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Enterolab


Lissa

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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


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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!


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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...

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    • Nicbent35
      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
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      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
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