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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.