Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up

Archived

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

Recommended Posts

I am trying to get diagnosed with Celiac...because I am 16 and extremely ill. I haven't been able to make it through one day of school for about 4 months, after having been gone for 7 weeks because of such severe anemia. I had IV treatments which we thought would make me have energy, but clearly it didn't. Now, after having been doing a lot of research, we decided to order the whole gluten/celiac panel at Enterolab. I did it and sent it off. I was then talking to someone at Celiac Foundation, and they told me that Enterolab is a scam and they are only allowed to do what they do because they are in Texas and they have different health regulations than we do in California. I was told you can't be diagnosed with Celiac by them and it was a total waste of money because you really need a proper diagnosis by a GI. THe only reason we did it with Enterolab was because we didn't want any preexisting on Insurance. I am on a gluten-free diet and have responded well, but I am still EXTREMELY symptomatic and we are waiting for the Enterolab results...but I don't know if it was a waste. Is Enterolab a scam? Can anyone shed some light? Thanks in advance. Sorry if something doesn't make sense...I'm really tired!

Kassandra :)


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I don't think it's a scam. They are very open with what they can and can not do. They do not claim to diagnose Celiac, but do test for Gluten reactions and other things, as well as identifying at least some of the genes that are thought to be celiac genes.

I was happy to get the information, and used it as one piece of the puzzle in my diagnosis.

Geoff


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

Share this post


Link to post
Share on other sites
I am trying to get diagnosed with Celiac...because I am 16 and extremely ill. I haven't been able to make it through one day of school for about 4 months, after having been gone for 7 weeks because of such severe anemia. I had IV treatments which we thought would make me have energy, but clearly it didn't. Now, after having been doing a lot of research, we decided to order the whole gluten/celiac panel at Enterolab. I did it and sent it off. I was then talking to someone at Celiac Foundation, and they told me that Enterolab is a scam and they are only allowed to do what they do because they are in Texas and they have different health regulations than we do in California. I was told you can't be diagnosed with Celiac by them and it was a total waste of money because you really need a proper diagnosis by a GI. THe only reason we did it with Enterolab was because we didn't want any preexisting on Insurance. I am on a gluten-free diet and have responded well, but I am still EXTREMELY symptomatic and we are waiting for the Enterolab results...but I don't know if it was a waste. Is Enterolab a scam? Can anyone shed some light? Thanks in advance. Sorry if something doesn't make sense...I'm really tired!

Kassandra :)

Enterolab is not generally accepted because Dr. Fine has not published is work in a peer-reviewed journal. This article by a GI was helpful for me: http://Spammers Use This To Link To Spam.com/?Diagnosing-Celia...y&id=239028

I didn't try to check up on the author, however it looks to me like he has good qualifications.

Most people that post here about Enterolab seem to find that their experience confirms the lab results. However, it is possible that the ones that don't feel it is confirmed don't post here on this forum.

Diagnosis standard in the USA is still a positive biopsy, and yet this admittedly misses some patients.

It is significant that you have improved on the diet, and yet perhaps something else is going on. Are you sure you are totally gluten free, not just food but personal products and cross contamination?


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

Share this post


Link to post
Share on other sites

That is really horrible that the Celiac Foundation said that.

It is controversial because they haven't published their work yet, but a SCAM??? That's a horrible thing to say. :angry: I'm stunned. :blink::blink::blink:

Not having pre-existing on my kids med charts is a big reason I went through them too. Enterolab just helped me know that I was barking up the right tree. The proof as far as I was concerned was their response to the diet.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

Share this post


Link to post
Share on other sites

By the way, the doctor who wrote that article that mftnchn linked to is Dr. Scott Lewey, one of the most well-known celiac doctors in the country.

:)

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

Share this post


Link to post
Share on other sites
By the way, the doctor who wrote that article that mftnchn linked to is Dr. Scott Lewey, one of the most well-known celiac doctors in the country.

:)

Nancy

Cool!!! Thanks, Nancy!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

Share this post


Link to post
Share on other sites

Kassandra, as others have mentioned, Enterolab cannot diagnose celiac. They can, however, tell you whether there is an immune reaction to gluten going on.

How long have you been gluten-free? Are you sure you're 100% gluten-free? What kind of symptoms are not getting better on the diet?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Cassandra- I have never heard enterolab called a scam. Just because someone hasn't published in a peer-reviewed journal does not make them a scam.

It sounds like you haven't been gluten-free that long and many people will tell you that it takes awhile to fully heal. You should make sure that all your body products/personal care items are gluten-free too.

The other thing you might want to do is eliminate dairy as most people who are gluten intolerant are lactose intolerant in the beginning. Try eating a really basic diet (proteins, some gluten-free carbs and little to no processed food).

The thing that helped me most was keeping adaily food journal of what I ate and how I felt.

Hang in there! :)


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

Share this post


Link to post
Share on other sites

If you look at the Enterolab website and see Dr. Fine's "Curriculum Vitae" (I think that's how you spell it) you'll see that he's very experienced. I don't think that they let scam artists be the head of Gastroenterology at Baylor U Med. Center - especially for 10 years. I actually had the chance to go to a seminar where he was presenting and talk to him in person. I'm convinced that he is NOT operating a scam, that he is on to something that mainstream medicine hasn't caught up with yet.

Hopefully, your Enterolab results will help you out.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

Share this post


Link to post
Share on other sites

Thank you everybody,

I went with them because we didn't want preexisting. I thought he sounded credentialed and experienced enough also which is why I was really surprised when the woman at celiac disease Foundation said that. As far as the symptoms I am still having, stomach aches, the big D, MAJOR bloating and weight gain, and then weight loss. I can lose up to 5 lbs in two days and then gain it back in less than one day. I am SURE I'm 100% gluten-free as we have bought new containers, my own section in the fridge, etc. I also have extreme exhaustion, to the point I can't function. I wake up in the morning and even after sleeping 14-16 hours, I could go right back to sleep. I have only been gluten-free for 15 days, lol, so I know I need to give it more time. I just was wondering what people thought about Enterolab. We are in the process of finding new insurance so I can get the proper medical care I need. I have not had my period in almost 5 months, and then last year I had it for 90 DAYS STRAIGHT!!!! I got really anemic from that, then I had iron IV's which we thought would help me, but I haven't had my period since the IV's, so it can't be my period causing the anemia, hence why we think I have Celiac. Sorry, i know I'm ranting but I am so SICK AND TIRED of being sick and tired!!! Im totally at a dead end, and feel like I can't wait any longer to hear if we got accepted from insurance. Also, I am pretty sure I have some other food allergies, almost 100% sure about eggs and about 80% about soy. Also, I am strictly Dairy Free also, and have been for several months, so I know it's not that either.

Kassandra :)


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites

Entorlab has been around a while now, and while that is not proof, it is true that with time most scams are revealed. I would not doubt their results esply given how POOR of a test the biopsy is. Entorlab test is similar to the IGA blood test, just more sensitive. The gene test is a whole another debate. The problem with that one is just because you have the gene, does not mean you have celiac disease. It is , IMO, interesting information but not really practical, IMO.

I have though about the testing procedures a lot lately, and read all that I could. What I have learned leads me to say if I was going to check IGA levels again, I would go with Entrolab.


- Vincent -

Share this post


Link to post
Share on other sites
Thank you everybody,

I went with them because we didn't want preexisting. I thought he sounded credentialed and experienced enough also which is why I was really surprised when the woman at celiac disease Foundation said that. As far as the symptoms I am still having, stomach aches, the big D, MAJOR bloating and weight gain, and then weight loss. I can lose up to 5 lbs in two days and then gain it back in less than one day. I am SURE I'm 100% gluten-free as we have bought new containers, my own section in the fridge, etc. I also have extreme exhaustion, to the point I can't function. I wake up in the morning and even after sleeping 14-16 hours, I could go right back to sleep. I have only been gluten-free for 15 days, lol, so I know I need to give it more time. I just was wondering what people thought about Enterolab. We are in the process of finding new insurance so I can get the proper medical care I need. I have not had my period in almost 5 months, and then last year I had it for 90 DAYS STRAIGHT!!!! I got really anemic from that, then I had iron IV's which we thought would help me, but I haven't had my period since the IV's, so it can't be my period causing the anemia, hence why we think I have Celiac. Sorry, i know I'm ranting but I am so SICK AND TIRED of being sick and tired!!! Im totally at a dead end, and feel like I can't wait any longer to hear if we got accepted from insurance. Also, I am pretty sure I have some other food allergies, almost 100% sure about eggs and about 80% about soy. Also, I am strictly Dairy Free also, and have been for several months, so I know it's not that either.

Kassandra :)

Hey hi there.... I know where u r comin from my son is 17 and "very fatigued" all the time after 17 hours of sleep,but since we have watched what he is also drinking, it seems to help (drinking more water now then ever did in his whole life),he also eats in his bed before he goes to sleep and wakes up less tired so maybe try those too :) we r here for ya and it is a hard challenge to face but hun u r not alone, tons of us just like u and now maybe our whole family has it (son tested positive Celiac Sprue 2 years ago)

Share this post


Link to post
Share on other sites

Have you had your thyroid checked? Your symptoms sound like thyroid. You would need your TSH, free T3 and free T4 checked (many doctors don't check all 3 of these).

Share this post


Link to post
Share on other sites
I have only been gluten-free for 15 days, lol, so I know I need to give it more time. ... Also, I am pretty sure I have some other food allergies, almost 100% sure about eggs and about 80% about soy. Also, I am strictly Dairy Free also, and have been for several months, so I know it's not that either.

Kassandra :)

Hi Kassandra,

Hang in there, there are lots of people here with suggestions to try!

It might need more time. Also since you are only gluten-free for 15 days, it also could be some source of gluten you haven't discovered yet. I've been at it a month and keep finding more. Yesterday it was the shampoo which I hadn't yet checked. (Well I read the label but couldn't make head nor tails of what all the big chemical words meant, so I wrote the company and they told me.) Just watching that has brought immediate improvement it seems, at least for 2 days.

When did you send in your enterolab? We'll hang in there while you wait for your results. Did you ask them to check the eggs and soy too? If not, you could try several things re: the other foods. You could try eliminating, being extremely careful like with the wheat initially at least, and then try a challenge with the food after day 5 but before day 10. With foods you are eating all the time the body can "mask" the symptoms, but after a total elimination and then a trial you should get a clear response.

You could also wait for your insurance and then do a blood test or a skin test for the foods. Elimination and food challenge is the most accurate test, but these also can give you information.

Here's hoping you will feel better soon and can handle school again. Sounds like a huge challenge!!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

Share this post


Link to post
Share on other sites

Sorry you are struggling so much at this age. One thing that also helped me was I had food allergy blood work done- They tested for almost 100 diff products. I am allergic to 27... Results may surprise you.

Good Luck

Share this post


Link to post
Share on other sites

Hello everybody,

thank you for all of your responses. I am going to try to see a GI dr and then an allergist as soon as we get the new insurance. I should be getting the Enterolab results in about a week or two. I am on the road to getting better, but am frustrated in the meantime. Thanks for all the great advice. I have had thyroid panels, but who knows if they took the right ones?! I will look into that. THanks again for all the advice. And, my shampoo is gluten-free, along with all the other beauty products i use.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites
Hello everybody,

thank you for all of your responses. I am going to try to see a GI dr and then an allergist as soon as we get the new insurance. I should be getting the Enterolab results in about a week or two. I am on the road to getting better, but am frustrated in the meantime. Thanks for all the great advice. I have had thyroid panels, but who knows if they took the right ones?! I will look into that. THanks again for all the advice. And, my shampoo is gluten-free, along with all the other beauty products i use.

It's tough, but be patient. I've found the getting back to normal after and accidental glutening takes 1-2 weeks for me. UGH. Your body has been suffering for a long time, and will take some time to heal. Just think of the last time your cut yourself badly, and how long before the scab was gone completely. It takes time. Celebrate the improvements you are seeing.

Geoff


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

Share this post


Link to post
Share on other sites

Im 3 months in on no gluten and like 6 weeks with no dairy, and i have good days and i have bad days. But my bad days are better then what my days were before i found out was wrong. It jsut takes time to heal. my stepson who is amsot 14, has more good days then bad days now. But i think it is more he has just learned to forget about the pain cause he is always busy lol

paula


gluten, casein and soy free

on low carb/low sugar diet

Share this post


Link to post
Share on other sites

Dr. Fine is a very good, very respected gastroenterologist doctor and researcher. His work is very cutting edge but he hasn't published his findings. When he does, he's going to take a lot of flack because he's finding that gluten sensitivity is much, much more prevalent than anyone ever supected.

I've heard him speak at our local Celiac group and he is bloody brilliant.

Anyway, whoever called enterolab a scam is utterly misinformed... to put it nicely.

Share this post


Link to post
Share on other sites

Have you been checked for deficiencies other than iron? There are several very common ones with celiac disease, which could also be causing the exhaustion. Vitamin D, calcium and magnesium, vitamins B6 and B12, as well as vitamin K and potassium should be checked. When did your ferritin get checked last?

With me, dairy, rice, eggs and soy especially (plus gluten, of course) cause the same symptoms you describe. You've already figured out some of them. Try eliminating rice to see if it makes a difference.

Also, I found that for the first six months of being on the gluten-free diet I couldn't eat anything raw (not even fruit or salad), raw food would give me an immediate awful stomach ache. Right now you might want to just try chicken and well cooked vegetables and fruits. It might help. And eat at least six small meals a day, rather than three large ones. Your stomach and bowels can probably only handle small amounts of easily digested foods at this point.

I got relief from the stomach pain from sepia, a homeopathic remedy you can find in the health food store (I haven't used it for many months now, I've been on the diet for 17 months). Whenever I got that awful pain right below my sternum I'd dissolve six of those under my tongue, and it usually helped within minutes.

I am also shocked that your celiac society would call Enterolab a scam! I guess they haven't figured out yet that most doctors know nothing about celiac disease, and have listened to the ignorant ones (which don't like Enterolab, of course).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

I am also one that doesn't believe enterolab is a scam. I had my family tested through them. We didn't have obvious symptoms, but I had tested IgG intolerant to a lot of gluten foods. I figure we were at the beginning of damage.

I didn't have the blood test done as I had been very gluten lite for 1 1/2 months and felt that the test would have been negative.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

I don't have any specific information on the topic, but I have always had this question in my mind:

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

I have only ever heard of positive test results from Dr Fine. If we believe that the incidence in the population is about two percent, there should be a lot of negative test results. Since only people with symptoms get themselves tested, I don't expect a 98% negative rate. But it should be substantial. I have never heard of somebody being tested by Enterolab who was NOT found to be intolerant to gluten. This causes me to doubt the validity of the test.

My own diagonosis was by positive biopsy showing celiac damage to the villi.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

Share this post


Link to post
Share on other sites
I don't have any specific information on the topic, but I have always had this question in my mind:

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

I have only ever heard of positive test results from Dr Fine. If we believe that the incidence in the population is about two percent, there should be a lot of negative test results. Since only people with symptoms get themselves tested, I don't expect a 98% negative rate. But it should be substantial. I have never heard of somebody being tested by Enterolab who was NOT found to be intolerant to gluten. This causes me to doubt the validity of the test.

My own diagonosis was by positive biopsy showing celiac damage to the villi.

There have been a few who have posted on this board that say they have gotten neg results. They are few and far between, which I would suspect since before most ppl will shell out a almost $400 for the full test, they usually are sick enough to make it worth their while. I would say of ppl taking his test, prbly 90-95% do have celiac disease just based on human nature. Just like doctors see sick ppl all day long, yet most ppl can go several days with out seeing a sick person. Sick ppl seek out doctors, and ppl with celiac disease seek out entrolab.

THats purely conjecture of course, I have no access to entrolabs records to say anything official. :)


- Vincent -

Share this post


Link to post
Share on other sites

Vincent,

Another perspective which I had not considered. But I still think the results are biased toward positive. The sample is defintely biased, but it is hard to tell just how far towards positive that would be.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

Share this post


Link to post
Share on other sites
I don't have any specific information on the topic, but I have always had this question in my mind:

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

Yes, my son tested negative through Enterolab.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

Share this post


Link to post
Share on other sites