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. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

    2. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    3. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    4. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,297
    • Most Online (within 30 mins)
      7,748

    Pam PA
    Newest Member
    Pam PA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.