I got my Enterolab results back....

I got these results back last week.  What do you all think?  Do you guys trust them and believe in their method?  Either way, I'll be avoiding gluten.........but casein and soy?? :(  I guess I should start avoiding that too?

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA    63   (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA    34 Units   (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score    403 Units   (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody    24 Units   (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1    0302  

HLA-DQB1 Molecular analysis, Allele 2    0503  

Serologic equivalent: HLA-DQ   3,1  (Subtype 8,5)

Soy Sensitivity Stool Test
Fecal Anti-Soy IgA    40 Units   (Normal Range <10 Units)


Interpretation Of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

[finepickle]

I don't know if the Enterolab tests are correct or not, but a lot of people do use them.  Many celiacs are lactose intolerant, and some have casein issues also, from what I've read.  And soy is not good for you anyhow.  So, it seems like a good idea to eliminate those things from  your diet.  I did!  I do plan to try dairy again once in a while, every 3 months or so, but so far it doesn't agree with me.

[Merrilee]

Your test results and genes, are very close to DH's. He's a 501 rather than a 503, but the end result is the same: Subtype 8,5.

I am waiting for Enterolab to publish their research, and I realize their work is controversial until that happens. It would never have occured to him to give up dairy. DH went GF for several weeks before he went CF but when he did  -  he saw big improvements. (He doesn't eat soy, but it is in one of his medications, so the positive test result seemed reasonable.)

Research shows that 50% of all celiacs will have problems with casein. Enterolab says this is permanent, because your body is mistaking it for gluten. This is different from celiacs who have problems with lactose - that is usually temporary. Soy intolerance is also common in this group.

I would advise you to not get rid of everything at once so that you can hopefully see the effects separately. He realizes now that he had more symptoms than he thought.  Be prepared for the possibility of "casein withdrawal" on days 3-5 or so.

Do you mind if I ask what problems/symptoms you were having that caused you to take the tests?

I think the tests are accurate enough to consider further testing and you shouldn't stop eating gluten until you are certain you are through with testing. Go ahead and stop soy and casein whenever you like.

I think I've answered your question...

[CaseyMae]

Hi Merrilee --

Thanks for your comment!  As for why I had the test....well I have been having stomach problems for the past 5-6 years (I'm 25).  I've had 3 colonoscopies and 2 endoscopies, the most recent ones in April of this year.  Here is what the endoscopy said:

"...The gastric mucosa was somewhat atrophic with petechial type erythema.  The duodenal mucosa was normal expect some mild blunting of villi at the second portion of the duodenum.  Retroflexion of the endoscope revealed a hiatal hernia...."

So, the villi had some mild blunting.......but my doc said I didn't have celiac (just chronic gastritis).  So, I went on for a couple months eating gluten but just couldn't take it anymore.  My symptoms were mostly GI in nature, although I lost my period for about 5 months and was extremely tired all the time.  My biggest complaint was gas!!!!!!!!  It was horrible...I knew something was not right; it could not just be IBS.  Also after eating, I'd have bloating, stomach pain, stomach would make horrendous noises, and just felt like nothing was being digested yet I was always hungry and thirsty.  My professors started asking if I was okay b/c apparently I looked "washed out" and whatnot.  

Anyway, I decided to go GF and immediately felt awesome!  I suspected I reacted to soy though b/c I was not 100%.  That's partly why I did the enterolab tests, and plus I just wanted some confirmation that gluten was a problem for me....and I wanted to make sure I wasn't crazy! :)

You said your DH has similar genes?  Does he have celiac or is he just intolerant to gluten?  I guess I don't have celiac, but I really believe I'm gluten intolerant.  I know some docs don't believe in "just intolerance" but whatever.  I do need to stop eating casein and soy though..I try but am not as diligent with these as I am with gluten.  

[5thave]

Hi, It is my understanding from a friend of the Celaic foundation in our area that if you have one of the genes and are symptimatic which you are that you do have Celiac's. You also have an extra gene for gluten intolerance. At least that is how I understood it. I took the gene test too from Prometheus labs. Unfortunately it did not give as much information as yours did. I too have the gene so am considered Celiac and have been gf for 5 months with occasional glutening that is just awful when it happens. If you eat it now after being away from it for a period of time what happens to you. Not only do I get the stomach nausea but I also feel fluish for about 24 hours. It is awful.

[CaseyMae]

that's interesting about having the celiac gene plus symptoms equals celiac.  I've always heard that you need to have a positive biopsy in order to be diagnosed with celiac.  I know that it can be very hard to diagnose though....even though my biopsy and blood tests came back negative, I still question whether it's possible for me to have celiac.  

When I eat gluten, I get excessive gas, diarrhea, stomach pain, bloating, stomach making gurgling noises when I eat anything for hours (sometimes a couple days), overall feeling blah but mostly having to do with GI stuff.  I don't really get flu like symptoms, it's really just stomach issues.

I know it doesn't matter if I officially have celiac or am just intolerant to gluten..........but a tiny part of me wishes I had the diagnosis, so I'd be 100% positive I'm not crazy and gluten really is my problem!  Even though my stool came back positive for gluten intolerance, having blood work and biopsies come back negative makes me think twice sometimes.

[SueNYC]

The results say no - I am not a totally believer in Enterolab but at least they seem to be honest in testing.  From what I understand, it all can be wrong.  My sister was/still is very sick because of a long undiagnosed Celiac disease that turned into a full blown auto-immune attack.  After going to the Celiac Center at Columbia, which told her she didn't (and that was after the Prometheus and biopsy) - they found it a full year later after she swallowed a camera.  And voila, it was  there. Her blood work was normal.  My son who test positive for gluten intolerance (and he carries the genes) was in a study at the Celiac Center.  Since he was 2 we had suspected he had Celiac (and his blood work was positive for gluten sensitivity).  Dr. Green assured us that the Prometheus test was sufficient (it is supposed to be 99% accurate that he will never develop Celiac).   But now, my sister who was given the same assurances, has celiac.  So now I don't know if we should go totally gf with him because he does loves his bread and noodles (which we cut down).  

[5thave]

So are you saying that your sister and son did not have the gene but have all the symptoms? We know the blood tests are not accurate. I would cut it out completely. If he has it and it goes unchecked it can be harmful.

[thecanary]

I have posted my Enterolabs results.  Does anyone know where I can find more info about what tests I should have to really determine how much damage Celiac has done to me at this point.

I am 57 and have been sick for 27 years with mysterious illnesses with no answers, despite having good health insurance.  Quite frankly, these results have answer many questions in the family.  My mother woke up at the age of 59 with complete kidney failure from some in diagnosed autoimmune disorder after years of mysterious illnesses and fatigue with no answers.  After 7 painful years on dialysis she died.  We all need to spread the word..undiagnosed Celiac can KILL you.


A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA    198   (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA    88 Units   (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score    750 Units   (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody    61 Units   (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1    0201  

HLA-DQB1 Molecular analysis, Allele 2    0604  

Serologic equivalent: HLA-DQ   2,1  (Subtype 2,6)

Interpretation of Fecal Antigliadin IgA:  Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutaminase IgA:  You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score:   A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

Interpretation of Fecal anti-casein (cow’s milk) IgA antibody:  Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

[Merrilee]

Caseymae,

I'm not certain your biopsy was truly negative.

Did you ask your doc what causes villi to be blunted?
Here's a post that addresses that issue
http://www.glutenfreeforum.com/index.php?showtopic=24969

I think you caught your celiac condition very, very early.

My DH just got his endoscopy done, no results yet, but you can see from the pics that the folds are flattened/missing, so he's expecting a positive DX. His symptoms on the gluten challenge were both GI and neurological in nature. He also broke out in hives once.

I think that answers all your questions, if not, pls post again.

[Merrilee]

Sorry,  I missed one -
Gluten has also affected my husband's hormones. His testosterone level was very low.

[Merrilee]

Thecanary,

You might want to repost your question as a separate thread so that it is easier to see on the board.

>Does anyone know where I can find more info about what tests I should have to really >determine how much damage Celiac has done to me at this point.

An endoscopy will show you intestinal damage and give you a definitive diagnosis. You may also want a colonoscopy, especially if you've never had one.

There are tests such as the spectracell that can tell you what nutritional deficiencies you may have (the malabsorption test result from Enterolab indicates that may be a possibility).  www.spectracell.com

Enterolab offers additional food intolerance tests (soy, eggs, yeast). You should consider the possibility of additional intolerances. Gluten and Casein intolerant folks often have problems with soy, for example. They can use the stool sample you've already sent within a certain time period.