Wary...

[aikiducky]

Just to add my opinion - I think it's best to have all the testing available, so if you are still eating gluten, by all means do have blood drawn and a biopsy.

Personally what I'd do is do the blood test and biopsy, then if those were negative, try the diet for a while (a few months), and if I felt that I was improving on the diet, maybe do the Enterolab testing for moral support, and continue being gluten free for the rest of my life. IF I felt I wasn't improving on the diet, I'd go back to eating gluten for a while. And if there were'nt any change in symptoms all this time, then I'd pursue other testing.

Now this whole process would take a while, but I think this way I would feel pretty confident that I had a valid diagnosis, either positive or negative.

And consider this - a gluten free diet is not life-threatening, untreated celiac can be. I'd prefer to err on the side of caution.

Pauliina

[Rachel--24]

Just to add my opinion - I think it's  best to have all the testing available, so if you are still eating gluten, by all means do have blood drawn and a biopsy.

<{POST_SNAPBACK}>

Yes...I agree. Get as much testing done as you can especially if you're still eating gluten. If you've already started the diet and still persue testing (as I did) just be aware that false negatives can and do occur.

[jojoe72]

Thanks for all your input!

I'm going to make a appt. with my doc to talk it over. What makes me suspect is ever since I was a kid I had sensitivities to foods. I talked to my parents and my Mom said she had taken me to many doctors when I was a young trying to find out what made me so irratible especially after eating certain foods (which ones I don't know). I can remember all through grade school and early high school basically living off Malox due to my stomach always hurting and having constant diarrhea. This eventually changed over to extreme constipation. In early college when I started drinking beer (alot of beer) I noticed I got extreme fatigue even after drinking 1 or 2 beers...basically to the point where I would go home and immediatly fall asleep. Then I started having panic attacks. This is what prompted me to see a doc. I got tested for everything under the sun (except Celiac) and they all came back normal. I was finally referred to a allergy doc who found numerous food allergies and yeast sensitivity. He also said all my problems were from Candida. When I went on the Candida diet (similar to celiac) I felt so much better. I felt like a new person but I never completely got over it (when I look back I can see there was still gluten in my diet). A couple of months back I got a CDSA test and it came back saying I had no growth of any probiotics in my GI tract. Finaly after reading about Celiac in Dangerous Grains, I've noticed if I do have gluten (triscuits, pasta or beer) my stomach gets very bloated and I get irratible and tired. I do come from an Italian family with a history of stomach issues. So, do you guys think I should start eating tons of gluten and then get tested? So far my docs seem to be a bunch boneheads.

Thanks

Joe

[Rachel--24]

Hey Joe,

It's really up to you about going back on gluten for a biopsy. The results of your gene test show you don't carry a main Celiac gene so the chances of a positive biopsy are probably slim. My GI doc believes there is more to learn about the genes as far as Celiac goes...from all my research it seems like there is only a very small chance...like 2% that you could have full blown Celiac w/out the genes.

This doesnt mean that there's not damage...just not the same damage that is seen with Celiacs.

Since you've been on the candida diet you would would have to go back on gluten for at least 3 months before testing. I dont know how sick you were before the candida diet but I know in my case there was NO way I could go back to that kind of misery for a test. The candida diet helped me alot and when I got my Enterolab results I just wanted to get on with feeling even better.

[bmorrow]

I have to add my opinion about Dr. Fine to this discussion. If any of you have read any of my previous posts, you know that I was also very skeptical of Dr. Fine and EnteroLab, until I was referred to Baylor Medical Center for a consultation with a GI specializing in chronic diarreha. My GI in Little Rock considered Dr. Schiller at the Fordtran GI center in Baylor to be the best in world on the treatment of diarreha. By chance, without my GI in LIttle Rock knowing, this doctor had been on the same research staff with Dr. Fine. They have papers that were written together, as well as a chapter in a GI book. Check Dr. Fine's credentials on his website.

I asked the doctor at Baylor what he thought of Dr. Fine, and he told me that he had no doubt that Dr. Fine's test results were accurate and that his procedures, sometime in the future, would be accepted by the mainstream medical community.

He asked me if I heard him sing and told me that he was really a good singer, and that this was a passion for him. He joked about him having different views on life then most of your doctors that go by the text book.

My blood tests were negative and my biopsy was considered inconclusive. At that time I had no idea that I should have requested the entire panel of blood tests and that an expert lab read the results. I had only two tests and the local lab read the results. I also only had two samples taken at the biopsy.

My doctor in Little Rock is the greatest to talk to, but he had very little experience in Celiac, but at least he was willing to look for help, and now I know that I definitely have Celiac. Both doctors gave me the diagnosis based on symptons, improvement on the diet, and Dr. Fine's results.

I also was diagnosied with microscopic colitis, fibromyalgia and hypogycemia. I had been anemic for at least three years, underwent two surgeries, and lost 20 lbs. in a short length of time, before going on the gluten-free diet.

I guess my opinion of the "gold standard" is that it is only as good as the doctor and the lab that are reading the results.

There are other genes that researches are looking into as a predisposition factor for gluten sensitivity and Celiac.

[jojoe72]

Hey Joe,

It's really up to you about going back on gluten for a biopsy. The results of your gene test show you don't carry a main Celiac gene so the chances of a positive biopsy are probably slim. My GI doc believes there is more to learn about the genes as far as Celiac goes...from all my research it seems like there is only a very small chance...like 2% that you could have full blown Celiac w/out the genes.

This doesnt mean that there's not damage...just not the same damage that is seen with Celiacs.

Since you've been on the candida diet you would would have to go back on gluten for at least 3 months before testing. I dont know how sick you were before the candida diet but I know in my case there was NO way I could go back to that kind of misery for a test. The candida diet helped me alot and when I got my Enterolab results I just wanted to get on with feeling even better.

<{POST_SNAPBACK}>

I really don't want to go back on gluten. I've been an athlete all my life and when I got hit hard with this I could barely get out of bed. Just to clarify, if I am only gluten sensitive and do not have Celiac disease are the symptoms basically the same? Could Gluten sensitivity alone be whats causing my problems?

Thanks again

Joe

[Rachel--24]

I really don't want to go back on gluten. I've been an athlete all my life and when I got hit hard with this I could barely get out of bed. Just to clarify, if I am only gluten sensitive and do not have Celiac disease are the symptoms basically the same? Could Gluten sensitivity alone be whats causing my problems?

Thanks again

Joe

<{POST_SNAPBACK}>

I had the same questions when I got my results back too. I thought gluten sensitivity was *lesser* of a diagnosis and couldnt possibly be the cause of all my problems. I was wrong...the people here set me straight. It is not less serious than Celiac Disease and the symptoms can be the same. I was on disabilty for 2 years before I got diagnosed. I just went back to work 3 weeks ago and its been great. I was completely unable to function before...crying everyday, wanting to die, couldn't get out of bed, every part of me hurt, sensitive to foods and chemicals, lost 25 lbs..and the list goes on. Did you ever take that yeast questionaire while you were on the candida diet. My score was 314 and I had pretty much every symptom on there which is why I believed I had candida. Plus I was feeling much better on such a restricted diet. Did something happen before you started having symptoms? Our stories are very similar...I had alot of stress before I got sick. Usually something happens to *trigger* the genes. I was pushing myself really hard at work and was in a very stressful relationship. All of a sudden out of nowhere I got hit with this.

If you havent already you should read "Dangerous Grains". It really put things in perspective for me.

[jojoe72]

I had the same questions when I got my results back too. I thought gluten sensitivity was *lesser* of a diagnosis and couldnt possibly be the cause of all my problems. I was wrong...the people here set me straight. It is not less serious than Celiac Disease and the symptoms can be the same. I was on disabilty for 2 years before I got diagnosed. I just went back to work 3 weeks ago and its been great. I was completely unable to function before...crying everyday, wanting to die, couldn't get out of bed, every part of me hurt, sensitive to foods and chemicals, lost 25 lbs..and the list goes on. Did you ever take that yeast questionaire while you were on the candida diet. My score was 314 and I had pretty much every symptom on there which is why I believed I had candida. Plus I was feeling much better on such a restricted diet. Did something happen before you started having symptoms? Our stories are very similar...I had alot of stress before I got sick. Usually something happens to *trigger* the genes. I was pushing myself really hard at work and was in a very stressful relationship. All of a sudden out of nowhere I got hit with this.

If you havent already you should read "Dangerous Grains". It really put things in perspective for me.

<{POST_SNAPBACK}>

Hmmm...funny you should bring up work and relationship. Both blew up for me right before this happened. 60hr weeks and a girlfriend that....well let's just say the relationship wasn't working. It scared the hell out of me thinking I was loosing it due to the stress...but I've always handled stress in a really positive way. I went to a couple of docs and got tested for everything. The only thing that came back slightly off was thyroid (TSH was really low but it came back to normal). I even asked about a shrink but even the doc said it sounds like a physical reaction. Anyway, you said that I didn't have the gene for celiac disease but as I read a little closer in my report and it says that "The gluten sensitive, celiac genes are HLA-DQB1*201 and HLA-DQB1*302 (HLA-DQ2 and HLA-DQ8, respectively)" My gene analysis is HLA-DQB1*302, 301. Would that not mean I have the gene? And yes, I just finished reading Dangerous Grains....great book. Thanks again for your insight.

Joe

[Nevadan]

Anyway, you said that I didn't have the gene for celiac disease but as I read a little closer in my report and it says that "The gluten sensitive, celiac genes are HLA-DQB1*201 and HLA-DQB1*302 (HLA-DQ2 and HLA-DQ8, respectively)"  My gene analysis is HLA-DQB1*302, 301. Would that not mean I have the gene? And yes, I just finished reading Dangerous Grains....great book. Thanks again for your insight.

Joe

<{POST_SNAPBACK}>

Hi Joe,

I may have started the rumor that you didn't have a celiac disease gene due to my earlier post. I did a quick reference to my Enterolab report and under "The serologic equivalents are as follows:" I see "If the molecular type is 0302, the serologic equivalent is DQ3 subtype DQ8" which according to my understanding means a version of DQ3. Now that you point it out I look further down the report page and see where they say the celiac disease genes are 0201 and 0302, so now I'm confused too. Maybe someone else will educate us both.

Sorry if I created a confusion.

George

[Rachel--24]

Sorry...I was going with George's earlier post cuz I really don't know all that much about how to read the genes although there are lots of people here that do...so maybe someone will help.

What did the report say? This is what mine says:

Although you do not possess the main genes predisposing to celiac sprue

(HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have a genotype

that predisposes to gluten sensitivity [either HLA-DQB1*03xx (HLA-DQ3, not

0302), or any HLA-DQB1*05xx or any HLA-DQB1*06xx (HLA-DQ1)].

If yours says something different than this you probably have a Celiac Gene.

Ok...I just reread your post and it looks like you do have a Celiac gene.

[Rachel--24]

We need Stephanie to read this post...I think of her as the "gene expert" around here. She would know for sure.

Anyways given the genes and the positive antibodies you can probably assume you have Celiac if you get better after eliminating gluten 100%.

[Matilda]

..

[jojoe72]

It is rocket science....From what I can gather from this report it seems to mean that it is a gene for Celiac but I was never too good with the scientific stuff. All I can say for sure is it looks like I came to the right place. I really appreciate all of you giving me your input. I can't imagine trying to figure this out on my own when even the docs don't fully understand it.

Thanks again,

Joe

[Puckster]

Hi Joe,

Just restating that yes, HLA-DQB1*0302 IS one of the two celiac genes. You got it!

Mariah

[skbird]

We need Stephanie to read this post...I think of her as the "gene expert" around here. She would know for sure. 

Anyways given the genes and the positive antibodies you can probably assume you have Celiac if you get better after eliminating gluten 100%.

<{POST_SNAPBACK}>

HAHAHA! Well, other people have already confirmed, yes that is one of the two. It is the less common of the two, but still a Celiac gene. I have almost the same gene and have been told by Dr. Fine it can act just like it. I have to agree.

It is more common of a Mediterranean background than Northern European (as DQ2 is). That said, my family is 3/4th Dutch and 1/4th Welsh/Scot. No Mediterraneans there. Interesting stuff, these genes.

Stephanie

[dwaters800]

For years my son has been horribly ill with Lyme disease and although he had recovered somewhat, he still had many health issues. A book about fibro suggested testing by Dr. Fine's lab and after reading some of his info, I had my son tested. He was positive on all tests except malabsorption.

We have been gluten free for about 2 months now and wow! what a difference. I knew better than to use a gastro doc for diagnosis because my son did not present in the classic sense and I had read it takes an average of 10 years to get a diagnosis when relying on traditional docs.

I am so thankful for Dr. Fine. I might have taken Winfield off gluten to see if he felt better but I wanted proof in hand before making such a drastic change. It is hard to stick to this diet but he is like a different kid - he's sixteen and now he if finally up and enjoying life. His Lyme doc says that the problems with his immune system due to gluten intolerance may have been the reason he was susceptible to the Lyme and why he did not respond well to treatment.

Ginny

[nettiebeads]

Is the Dr. that runs this lab kosher?  I see that his name is Kenneth Fine but I also see that he goes by Kenny "Jude" and is a singer selling celiac disease's.

Is Enterolab testing valid or is it questionable? Is this "expert" valid or is he questioned in the medical community?

Seems incredibly expensive to buy your own tests instead of seeing the doctor about something like Celiac...I'm confused.

Thanks for your responses in advance...

<{POST_SNAPBACK}>

I was browsing the web and came across Dr. Fine's bio and resume. I'm impressed, especially since he received his Dr degree from University of Missouri at Kansas City, the same one my retired dr came from. And it was my gp that dx'd celiac disease. They must be teaching something right at that school. Dr. Fine's work is impressive, and you can see the gradual progression to specializing in celiac disease. He has several monographs, participated in many other medical studies and clinical trials, is board certified in Missouri and Texas, and obviously knows what he's doing. And he's bucking the trend, letting people get their answers w/o going through dr's and the medical communities/insurance labyrinth of doors. and the bio mentions his involvement in bands. Sounds like an overachiever to me.

[DianeByrd]

Has anyone ever heard of someone getting negative test results from Dr. Fine? It seems to me that everyone I've read about already believed they had celiac disease or some form of gluten sensitivity and that Dr. Fine simply confirmed it. I'd love to know what percentage of patients he tests have positive results.

I'm asking because I've put off the test for my two-year-old daughter because of the expense. Doctors have run tests on her with only a positive for IgG. The 72 hour fecal fat and HLA DQ2 and HLA DQ8 and biopsy were negative as well as all the other antibodies in the blood.

The main reason I think my daughter may have a gluten sensitivity is the incredible weight gain she had for a 6 week gluten-free diet - 2 lbs when she was only 18 months! Also her dad has lactose intollerance and IBS and I have never been able to put on weight.

Anyway, I'm hoping to convince my insurance to approve payment for Dr. Fine's tests. In the meantime, I'm jumping through the pediatric GI doctor's hoops, trying Prevacid to see if she'll gain weight.

Diane

The lab is certified with whatever organisation certifies labs, so I do believe they do the tests you pay them to do. They question is, whether you believe they are valid tests, given that so many more people get positive results this way. There's no evidence yet that all those people with stool antibodies are healthier off gluten, other than all the stories like Rachel's that you read here.

Best wishes,

Matilda

<{POST_SNAPBACK}>

[Wandering Hermit]

Has anyone ever heard of someone getting negative test results from Dr. Fine?  It seems to me that everyone I've read about already believed they had celiac disease or some form of gluten sensitivity and that Dr. Fine simply confirmed it.  I'd love to know what percentage of patients he tests have positive results.

<{POST_SNAPBACK}>

Exactly. My question exactly.

What is the sensitivity and specificity of his tests? Until I see these stats, I don't trust any of it.

As far as I am concerned, the fact that there are nothing but testimonials on his site which say "thank you for telling me I have celiac" and none that say "thank you for showing me I don't have celiac disease" raises a huge red flag. I have the feeling that if I sent him 100 control samples from non-celiacs he would tell me that 99 of them test positive for celiac disease. I'd gladly pay the $$$ if I knew the results would be definitive, but I until I see an independent assessment of his methods there is no way I will pay for it.

[Rachel--24]

Exactly. My question exactly.

What is the sensitivity and specificity of his tests? Until I see these stats, I don't trust any of it.

As far as I am concerned, the fact that there are nothing but testimonials on his site which say "thank you for telling me I have celiac" and none that say "thank you for showing me I don't have celiac disease" raises a huge red flag. I have the feeling that if I sent him 100 control samples from non-celiacs he would tell me that 99 of them test positive for celiac disease. I'd gladly pay the $$$ if I knew the results would be definitive, but I until I see an independent assessment of his methods there is no way I will pay for it.

<{POST_SNAPBACK}>

Wandering Hermit,

Enterolab actually doesnt diagnose anyone with celiac disease. They will only tell you if your body is producing anti-gliadin antibodies. They can also tell you what genes you have and if you have malabsorption or not. I think something like 70% test positive. This is NOT 70% of the population but 70% of the people who test at Enterolab. The results will NOT tell you if you have celiac disease or not but you can pretty much put the pieces together with your symptoms, genes, and positive or negative antibody test. Alot more people test positive from Enterolab because alot of people have non-celiac gluten sensitivity. Celiac tests dont diagnose these people...unfortunately...and the symptoms arent any less severe. When you put together the people who have celiac disease plus the people whose immune systems are reacting to gluten w/out celiac disease (this is a much larger group) you get a large amount of people. This is not a rare condition as we all now know. I would think that a person who has no idea what gluten is and has no symptoms would not go to Enterolab for testing. The vast majority of people using Enterolab already *know* they have a gluten problem but either havent been helped by doctors or have tested negative for Celiac but have obvious symptoms and improvement from diet. I think this is why we see so many positives.

BTW...how is your gluten challenge going?

[kelliac]

I wholeheartedly agree. I do not think his tests are all that expensive considering the kind of money I spent trying to find answers for 3 years. Endless doctor appointments, prescriptions, tests, supplements, lost wages...it all adds up.  It was all useless and a waste of my time and money. The doctors suck. My doctor told me I didnt have to be eating gluten before my bloodtest...of course it was negative and I went a whole more year of being sicker than ever and wanting to die.

The money I spent for my Enterolab tests was without question the best money I ever spent! I only wish I'd done it a whole lot sooner.

Dr. Fine seems to really care about people which is alot more than I can say for most of the so-called doctors I've seen. I currently have a complaint against my HMO for the way I was treated...maybe it will go all the way to arbitration...maybe I'll just forget about it because I'm feeling good now. I know I'll never trust doctors again after this nightmare though.

<{POST_SNAPBACK}>

Went back to this 10-15 post because it sums it up. Enterolab is worth it because at least it is an answer. Many doctors just don't know enough about the widespread gluten sensitivity issue. Rachel mentions she has a complaint against her HMO, maybe that is what it's going to take to get insurance/doctors/etc. to change their attitude about GSE. A class action suit by all underdiagnosed celiacs/gluten sensitive patients is probably being worked on by lawyers as we speak.

[Nevadan]

Wandering Hermit,

I would think that a person who has no idea what gluten is and has no symptoms would not go to Enterolab for testing. The vast majority of people using Enterolab already *know* they have a gluten problem but either havent been helped by doctors or have tested negative for Celiac but have obvious symptoms and improvement from diet. I think this is why we see so many positives.

BTW...how is your gluten challenge going?

<{POST_SNAPBACK}>

I agree with Rachel. Additionally, people who would be tested by Enterlab and get results not indicating gluten sensitivity are not likely to post again on forums such as this which also skews the data we see here. Our world here on this forum is definitely not a random sample - most have problems in search of a solution.

I do agree that it is unfortunate that Dr. Fine has not been more forthcoming with publishing his methods and results for peer review. A good review would potentially open up this type testing to many, many more people, but on the other hand Enterolab has a monopoly for now. BTW, the fact that Enterolab is a "not for profit" entity does not mean that Dr. Fine & staff are not being paid handsome salaries (e.g. the head of American Red Cross earns a 6 digit salary even though they are "not for profit").

Back to the question of dx'ing gluten sensitivity, in my opinion it still seems for those with observable symptoms, the most definitive test is a dietary challenge. If one observes positive results from being gluten-free, then is additional testing really necessary except perhaps DNA testing to help identify risks for others in a family? The cases of asymptomatic gluten sensitivity/celiac disease or dietary compliance testing are a different issue where reliable testing is necessary, so I'm not saying we don't need good testing available. Just my $.02 worth.

George

[Wandering Hermit]

Wandering Hermit,

Enterolab actually doesnt diagnose anyone with celiac disease. They will only tell you if your body is producing anti-gliadin antibodies. They can also tell you what genes you have and if you have malabsorption or not. I think something like 70% test positive. This is NOT 70% of the population but 70% of the people who test at Enterolab. The results will NOT tell you if you have celiac disease or not but you can pretty much put the pieces together with your symptoms, genes, and positive or negative antibody test. Alot more people test positive from Enterolab because alot of people have non-celiac gluten sensitivity. Celiac tests dont diagnose these people...unfortunately...and the symptoms arent any less severe. When you put together the people who have celiac disease plus the people whose immune systems are reacting to gluten w/out celiac disease (this is a much larger group) you get a large amount of people. This is not a rare condition as we all now know.  I would think that a person who has no idea what gluten is and has no symptoms would not go to Enterolab for testing. The vast majority of people using Enterolab already *know* they have a gluten problem but either havent been helped by doctors or have tested negative for Celiac but have obvious symptoms and improvement from diet. I think this is why we see so many positives.

BTW...how is your gluten challenge going?

<{POST_SNAPBACK}>

Ok, fair enough on Enterolab.

As for my challenge...thanks for asking. It has been about 2.5 weeks and I don't feel any different at all. Have not gotten sick or anything. BMs are the same as they were off gluten. Of course I know this does not mean anything. It will be interesting to see what the blood tests say in a few months. But if nothing else, I now know that eating gluten does not produce any symptoms for me directly.

[Rachel--24]

Ok, fair enough on Enterolab.

As for my challenge...thanks for asking. It has been about 2.5 weeks and I don't feel any different at all. Have not gotten sick or anything. BMs are the same as they were off gluten. Of course I know this does not mean anything. It will be interesting to see what the blood tests say in a few months. But if nothing else, I now know that eating gluten does not produce any symptoms for me directly.

<{POST_SNAPBACK}>

Well at least you can enjoy eating with your family for the time being. It will be interesting to see the test results since you have no change in symptoms. Maybe you can eat some pizza for me...and donuts...and oh yeah...CAKE!

[Wandering Hermit]

Well at least you can enjoy eating with your family for the time being. It will be interesting to see the test results since you have no change in symptoms. Maybe you can eat some pizza for me...and donuts...and oh yeah...CAKE! 

<{POST_SNAPBACK}>

Yeah, I definitely am viewing this as temporary. I will not get my hopes up. This is my 'farewell tour' to certain restaurants I love and foods I crave.