Enterolab Results Question

[Bailey]

Hello. I'm new to this forum. I have a 1 year old son who, starting around 7 months, was failing to thrive. Around 9 mos. old, I modified his diet and he is now entirely gluten free. He began to gain weight almost immediately. I have had GI symptoms for as long as I can remember, so I decided to get myself tested in an effort to aid in my son's diagnosis (my son had a blood test at 9 mos., and came up negative for celiac; he has an appointment with a peds GI specialist next month). I received the following results from Enterolab and have a few questions I hope someone can help answer:

(1) If it was determined that my small intestine is not damaged, why go gluten free? I have had symptoms for so many years, but have learned to cope with it. If I have not been damaged by gluten over all this time, why not just go on as I have been? Has anyone experienced a similar sort of test result?

(2) Have any of you been tested through Enterolab and then brought the test results to a GI appointment? If so, how has the GI reacted? Without some sort of live, in person diagnosis, there is no way my family is going to be supportive. My mother's side of my family has always had "weak stomachs," but everyone has learned to live with it, assuming as we have always been told -- that GI symptoms are nonspecific and hard to diagnose, and it's just the way our bodies work. My mother knows that my son needed some intervention, but is still convinced whatever he has he will outgrow. She is just not receptive, so I have an appointment with a GI - but I'm concerned about the reception I'm going to get.

Thank you so much. I just got these results this morning, and I'm still just not sure what to do with all this. Nicole

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA  65  Units    (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA  39  Units    (Normal Range <10 Units)

Stool Test for Small Intestinal Malabsorption

Microscopic Fecal Fat Score:  61  Units    (Normal Range < 300 Units)

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody    50  Units    (Normal Range <10 Units)

Gene Test for Gluten Sensitivity

Molecular analysis:  HLA-DQB1*0503, 0303

Serologic equivalent:  HLA-DQ 1,3  (Subtype 5,9)

Interpretation: Analysis of this stool sample indicates you have dietary

gluten sensitivity resulting in an associated autoimmune reaction to the

human enzyme tissue transglutaminase, but no small intestinal

malabsorption/damage. You also have antibodies to the main cow's milk

protein, casein, and hence, you are immunologically sensitive to food

products containing cow's milk.

HLA gene analysis reveals that you have a genotype that predisposes to

gluten sensitivity (HLA-DQ1, 3 especially that involving DQB1* 0303). This

genotype also can predispose to microscopic colitis and other autoimmune

syndromes.

For optimal health and prevention of further small intestinal damage,

osteoporosis, damage to other tissues (like nerves, joints, pancreas, skin,

liver, among others), and malnutrition, recommend a strict gluten free diet

and re-testing in one year to insure this reaction is lessening. If you are

experiencing any symptoms, these may resolve following a gluten free diet.

Since antibodies to cow's milk are found with a greater frequency in gluten

sensitive individuals and people with certain autoimmune diseases, removal

of these foods from your diet may benefit you directly, as well as add to

the benefits of a gluten-free diet (if you avoid gluten).

As gluten sensitivity is a genetic syndrome, you may want to have your

relatives screened as well.

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: Laboratories at Bonfils

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank you for allowing EnteroLab to help you attain optimum intestinal and

overall health.

[stef-the-kicking-cuty]

Hello Bailey,

first of all, it's very good, that you (not like your family) are very aware of the problems you might have. That's good, keep on searching.

Then now I try to answer to your questions.

1) I want to make the tests with EnteroLab, too. Sooner or later here. But money is an issue with us, so I didn't do it yet. Well, EnteroLab say of themselves, that they are pretty secure with their test results. They say, that there is 'no small intestinal

malabsorption/damage'. So I think, they mean, that the villy are ok? But still, even if they are pretty secure, i guess you can't be 100% sure. You're sensitive to cow's milk, so something isn't right. And you probably get damage somewhere in your body. On the other hand they write: 'For optimal health and prevention of further small intestinal damage,... ,recommend a strict gluten free diet...'. So i'm not getting it quite here. On one side they say, that there's 'no small intestinal damage and on the other they say for optimal health and prevention of further small intestinal damage (and so on) stay on gluten-free. I would say, just try to stay on gluten-free and see how it works out? And even, if you only have pain (only symptoms), it can still damage your intestines. If not now, it could damage it in the future. What i actually wanted to say is, try gluten-free and see, if it works better for you.

2) Since my bloodwork was negative and I didn't have a biopsy, I asked my doc, how about getting tested with EnteroLab. And he said: 'Yes, why not, you need me to write you something for it?' So his reaction was positive. Every doc is different though (I would be concerned about a reaction, too) and I guess most of them guys are not so understanding about EnteroLab. And the negative blood tests don't mean anything. I think it was even on this board with the mother of the twins that took her a couple of years and several testings, until one test was positive and they finally figured out what the kids had? So it might take several tries, until you get the right results.

Hugs, Stef

[FaithInScienceToo]

Dear Bailey,

OK...here's how I see it:

If you KNOW that you are genetically 'loaded' to have a negative immune reaction to a substance, why on Earth would you ever want to ingest it?

As Stef said, also...how do you know if some other system, or systems, in your body isn't already being damaged, but you just don't have 'clinical' symptoms YET?

I am presently, and permanently, on a self-imposed gluten-free diet...Why?

Because by the time I was 39, I ended up with enough 'body-damage' to get diagnosed as 'having' IBS, ADD, fibromyalgia, atopic dermititis, adult acne, chronic allergic problems with my eyes,' etc...and suffering all of those 'digestive problems' you hear others on here reporting...followed by crazy invasive tests leading to 2 anal surgeries...

Now, all of this 'nonsense' MAY have been prevented had I stopped consuming gluten YEARS ago...IF someone had told me wbout this stuff...(and who knows what else I have 'problems with'...but I WILL find out ALL of what I should not be eating, as I plan to get ALL possible food-problem testing done)...

I, too, will be having the Enterolab tests done...they are on their way right now...

I can hardly wait to receive the package, take the tests, and find out the results...

BUT, I feel SO much better already with my gluten-free lifestyle...I can 100% honestly say that it doesn't REALLY matter to me what the results say...I simple will NEVER again put gluten in my body UNLESS "science" can 100% for certain come up with a way to INSURE it won't poison me, including ANY body system...because I feel SO much better without it...

...I have been gluten-free since Jan 10...but only 100% 'for certain' gluten-free for about one week now...

MY RESULTS SO FAR:

NO MORE ACNE, at all! It finally completely cleared yesterday!

VERY LITTLE GAS compared to the INSANE amount before...FINALLY!!!!! Yipee!

I have noticably MORE energy!

I think better already...the idea of going off Ritalin is seeming possible...

I feel HAPPIER...I plan to reduce the Paxil I take from 25 mg back down to only 12.5 per day...and maybe to get off of it all together eventually?

I DO NOT bruise like I used to...it was AWFUL...big bruises that would not go away...I stopped wearing shorts/skirts completely, and I have lovely legs...my best feature...now, bruise are going away like 'the should,''which must mean I am finally absorbing Vitamin K again...(and the 'dumb' dermatologist AND family physician dismissed my excessive bruising as 'aging thin skin!' UGH!!!)

One last point I want to make...

If you let your family decide for you how much weight to give SCIENTIFIC EVIDENCE, and how much you will play "Russian roulette with reality"...Well, I feel it would be a TERRIBLE mistake on your part...in not only that your health very well may suffer for it, but I feel 100% certain that your self-esteem will...

All of that was said with 100% LOVE...on this day, Valentine's Day...

Love your body...you only get one....

XO - Gina

[mommida]

Your test shows you are gluten sensitive.

You have an auto-immune response to gluten.

You are sensitive to casein.

The damage to your intestine has not been drastic enough to prevent all absorbstion of nutrients, at this time.

My understanding of Celiac and these results = you are having an auto- immune response to gluten that will cause damage to your small intestine. (It seems that is where the problem of getting Celiac Disease diagnosed, you have to have enough damage to the intestine to be labeled Celiac.) You likely have damage to the tips of the villi, that is responsible for the casein digestion causing the intolerance to casein. I would think a doctor would be able to determine you have Celiac. ( check a post by professor and the link provided to the genetics of Celiac)

For your child's testing...

A lot of information that I read on this site says the tests for Celiac are not accurate for a patient under the age of 20 months. That was true in my experience with my daughter. Blood tests were negative. She was hospitalized for dehydration before she could have a biopsy. I would not allow her to have any more gluten at that point for her safety. She has had a 100% improvement on the gluten free diet. Her genetic tests came back HLA DQ2 and HLA DQ 8. Are think those two are the most accepted genes for Celiac.

I would also like to say, I am not a doctor, all "advice" I have given in this post is just my opinion from information that I have read on this site. I feel the grammar I used could possibly lead someone to an opposing opinion, but since the phone rang about 5 times and my kids are climbing on me on the time I am trying to write this, please have the consideration to express any opposing opinions in a respectfull way. Thank you,

Laura

[KaitiUSA]

Bailey-I agree with what the previous posters have said. You may not have damage to your intestine YET but consider yourself lucky. If you don't start the diet now, you could be damaging yourself with every bite of gluten and then end up with cancer or another life threatening and serious illness. For people who do not follow the diet it increases their chances dramatically. Don't put yourself at risk for an inconvenience. It will get easier to live with as you get used to it. It is not worth your life. It will damage you eventually and is probably damaging you in other areas you don't know about yet. You have only one life to live so don't intentionally try to kill it.

When your child was tested was he gluten free? That causes the tests to come back negative.

Good luck and hope everything works out good

[stef-the-kicking-cuty]

You likely have damage to the tips of the villi, that is responsible for the casein digestion causing the intolerance to casein.

That's what I thought, too. I just forgot to write it.

Hugs, Stef

[tarnalberry]

You likely have damage to the tips of the villi, that is responsible for the casein digestion causing the intolerance to casein.

I believe that concept applies to lactose, but not casein.

[gf4life]

I think the problem with casein is two-fold. First it is similar in molecular structure to gluten and your body might be confusing it with gluten, thus causing a reaction. Second, even minor (and virtually invisible) damage in the intestines could cause the milk proteins to leak and cause a reaction. There hasn't been much research done on the subject in regards to gluten intolerance that I know of (if any at all).

I did the Enterolab tests about 17 months ago. I had been dairy free for about 15 months and have been gluten free now for about 13 months. I introduced dairy again, and have been tolerating it fine. The only things I have problem with now are the dairy items (cream cheese, cottage cheese, sour cream, etc) to which they add guar gum as a binder. I get a bad bloating and gassy reaction from guar gum, so those products I use infrequently and in small amounts with the full knowledge that they will cause me some discomfort.

As for the statement "no small intestinal

malabsorption/damage", I feel they should add the word YET to the end. It will most likely occur in the future enough to be diagnosed as Celiac.

I personally couldn't see the point to continuing to eat the foods that I knew were already causing me discomfort, just because I was not yet at the point of "total villous atrophy" that could be seen in a biopsy. I was very ill and have improved so much since being gluten free, that no one could ever convince me to go back on gluten again. For me the Enterolab tests were confirmation of what I already knew. They were also enough for my GP to order lab tests and referrals for my children, since their symptoms were not yet severe enough to warrant testing for them. I have had 4 out of 6 of our doctors accept the results of the testing. The two that didn't accept them were the GI specialists and one of them is willing to keep an open mind on the subject, but admits he isn't familiar with the lab and cannot give the children the officail diagnosis of celiac disease without the biopsy. They are all on the gluten-free diet and doing wonderfully as well. My personal GI is the only one who flat out refuses to accept the Enterolab results and won't even accept that I have the genes to support it.

You will need to make the decision yourself, but what the others have stated above is all true as to the risks to your health if you choose to continue eating gluten.

God bless,

Mariann

[Bailey]

Thank you all so much for your replies. I really appreciate your taking the time to respond to me. When I got the test results, I was really not surprised. I have had one GI problem or another my whole life. A large part of me just cannot conceive of finding a reason for all of this after all these many years. If I had seen the results say that there was malabsorption, I think I would have stopped on a dime. I have to shake the feeling that, if I have had problems for so many years, but I have learned to deal with them in one way or another and there has been no lasting damage, why change course now so dramatically. I am in a bit of a holding pattern now until I see a GI next Wed. If nothing else, though, the test results make me feel more comfortable that I am on the right track with my son. And that was my goal all along.

BTW, Mariann, I have read that casein is similar in structure to gluten, and that is part of why many celiacs are also sensitive to casein. I don't remember where I read it, though. I know from dealing with my son's diet that avoiding casein makes the whole diet so much harder. I was really hoping that he would outgrow his casein sensitivity. If I could give him dairy, it would be so much easier to make him food that doesn't seem so "different." I also have separate concerns about my daughter (she is nearly 3, and has had very infrequent bowel movements since she was a baby (she's now on Miralax, an Rx laxative) and is often very, very bloated) that I want to explore as well, but she's older. Accustoming her to a gluten free diet, if that becomes necessary, will be a lot easier if she can continue to have dairy. You mentioned that your children are gluten free. Did you put any of them on a gluten-free diet when they were already preschoolers? How did you explain it, particularly if they are not diagnosed "celiac" due to the lack of an endoscopy? I feel like I'd have to give my daughter a definitive label, if it became necessary.

Again, thank you so much. It means more to me than you all know.

Nicole

[pixiegirl]

I had EntroLab testing done and I had both of the main "genes" for celiac... I also showed auto immune reaction as well. Just like you I didn't have any malabsorbtion so I guess I don't have any damage yet.

But why push it until I get damage, my health is really important to me so I never considered continuing to eat gluten... what will you do, eat it until you damage your intestines? And after reading this list for months I've become well aware that many different types of damage can occur.

The other issue is that you said you have had various GI problems for years, I'm exactly the same way... do you want to continue to live with those GI upsets? I guess these are questions that everyone has to answer for themselves.

Once I went totally gluten-free all my GI upsets went away and I can't begin to tell you what its like to live normally! I really had forgotten what it was like not to have gas, the runs, pain, wow I wouldn't go back to gluten for all the tea in china. One other great thing is that my outlook has changed, I'm far happier and have more energy then I had before going gluten-free. (not to mention that I've lost 5 lbs and its come off without dieting).

I'm a happy camper.

Good luck on whatever you decide!

Susan

[lbsteenwyk]

I also have separate concerns about my daughter (she is nearly 3, and has had very infrequent bowel movements since she was a baby (she's now on Miralax, an Rx laxative) and is often very, very bloated) that I want to explore as well, but she's older.  Accustoming her to a gluten free diet, if that becomes necessary, will be a lot easier if she can continue to have dairy.  You mentioned that your children are gluten free.  Did you put any of them on a gluten-free diet when they were already preschoolers?  How did you explain it, particularly if they are not diagnosed "celiac" due to the lack of an endoscopy?  I feel like I'd have to give my daughter a definitive label, if it became necessary. 

My daughter is 3 and has been gluten free since since 26 months. I put her on the gluten free diet to see if her symptoms improved, and when they did I opted not to put her back on gluten to have her tested. I have been surprised at how easily she has accepted being gluten free. At 2 and a half I began explaining to her in very simple terms that gluten made her sick. I took her to the grocery store with me and pointed out items that had gluten. I explained that we had to look at labels carefully to be sure the food did not have gluten. At this age, they really do not need a fancy explanation, just that gluten makes them sick. My daughter also had very bad constipation, so I told her not having gluten would help her poop easier. Again, use very simple explanations. I have been amazed at how well she has accepted being gluten free. She always asks me if foods have gluten and she understands that we have 2 different kind of pastas, etc. I think it is better not to try to hide the gluten containing foods from them, just keep reinforcing that they have special versions of some foods. My daughter loves her "special" bread, etc. I think the trick is to help your child feel she is getting something extra and special rather than being deprived of something.

If you suspect your daughter has celiac disease, why not have her tested now, before you put her on the diet? Just having the blood work done is not very invasive and it would give you more ammunition with your son's diagnosis.

[mommida]

Tarnelberry,

Can you please note the similarities and differences between lactose and casein? That might be helpful information for people who are avoiding dairy.

Thank you,

Laura

[gf4life]

Did you put any of them on a gluten-free diet when they were already preschoolers? How did you explain it, particularly if they are not diagnosed "celiac" due to the lack of an endoscopy? I feel like I'd have to give my daughter a definitive label, if it became necessary.

Nicole,

My children were 4 (a month shy of being 5), 7 and 9 when they went on the gluten-free diet. All of them had spent the two years previous hearing me talk about gluten and the testing I was doing for myself. They knew when I had them tested that they might possibly have to go on the diet, and in fact had already tried many gluten-free foods, so we already knew what we liked and what we didn't as far as gluten-free replacements for common foods. When the testing came back positive from Enterolab their pediatric GI and I agreed that biopsies probably wouldn't be a good idea, since their blood tests were borderline, and the Enterolab tests showed less damage than would probably be needed for a diagnosis of Celiac. We just agree to call them gluten intolerant and keep them on the diet. Since their symptoms all improved on the diet, that was really all that mattered. I haven't had any problems with getting the school to comply with their dietary restrictions, but I do provide ALL of their gluten-free food needs. I do not expect the school to provide them with gluten-free food. They bring their own lunches, snacks, party food, etc. Occasionally a situation occurs where my oldest son complains about not being able to have a certain thing that the other kids have, but in general my kids tend to feel like they get the special food and every one else has to have the boring ordinary food. I think it helps that many of their friends have tried the gluten-free foods/cakes/cookies/treats and they like them better than regular wheat/gluten products. I was very glad that we all needed the diet. It helps to have everyone eat the same, no one feels like they are the weird one in the family. The only one that feels left out at our house is my husband, since many times we all choose NOT to share our special gluten-free treats with dad! He has to go get his own treats from the store!

I certainly didn't want to put my children on such a strict diet if it wasn't necessary, but I believe the Enterolab testing is more sensitive and accurate, so it didn't matter to me if the kids didn't have the endoscopy/celiac diagnosis. I believe that the diet should be considered when they are testing for gluten intolerance. No matter what a persons test results, if they show marked improvement on the gluten-free diet, then that should be considered a positive result.

God bless,

Mariann

(Sorry if I am rambling, or if my thoughts aren't clear. I recently had surgery and am on pain meds. I keep having to ask my husband how to spell certain words. I feel sort of dumb right now, but I know it is the meds... )