Enterolab Negative Results

[trcrampton]

Hi Everyone-

I'm new to this board and have some definite questions regarding proper testing. My 22 month old daughter is most likely Celiac. Her first year and a half of life was a blur of colic, chronic diarrhea and one strange test result after another with no real answers from the "specialists". Finally we went to a Naturopath who recommended a gluten/casein free diet and we finally saw some improvements. By the time we got referred to a gastroenterologist we had been through the mill with the Hematologist and Allergist. Because she had been on the gluten free diet for some time the GI could not perform the biopsy and we agreed not to risk her health by challenging her at this point. She was in the 3rd percentile for weight at that time and could not afford to lose more weight. Because she is IgA defiecient and had a number of other symptoms the GI said she could say with 90% certainty that she has celiac disease. She asked that we get the bloodwork done for my husband, my 4 yr old daughter and myself. We all went through our individual primary doctors and my results and my husbands results were both negative (still waiting on our other daugther's results). We had the tTG IgA, tTG IgG, Gliadin Antibodies IgA, and total IgA serum. Granted they were processed through Quest and by the looks of it people on this board have generally found them to be inferior.

I have done so much research on this subject and I highly suspect I have celiac disease. I also had poor weight gain during early childhood, am of short stature now, had recurrent miscarriages, the whole celiac disease bag. I as on a gluten free diet (which began primarily because I was breastfeeding) but purposely went off it for some time just to be tested. I was feeling so much better on the diet. It is my opinion that gluten (amongst most other grains and dairy) are not good for anyone but to say that in a carb crazy world is risking great criticism. I am willing to just go gluten free on the sheer fact that it makes me feel better, but I also struggle with the lack of validity the test results can give to back you up in the medical establishment (because "feeling better" is not enough proof that gluten free is healthier). And on some level (I know I'll get over this with a bit more time) I feel I need this validity with my family, many who suffer similar symptoms as myself but don't seem to take this seriously and keep asking me if my daughter will "grow out of it" because they think I am torturing her with denial of goodies (yet she doesn't even know what she's missing). I also feel I could use the validity for myself when I'm just dying for that cookie!!!

So my questions are:

(1) Does anyone here have a child with celiac and neither parent has positive results? Wouldn't at least 1 parent need to have the gene? And if that is the case wouldn't it be wiser to avoid gluten even if celiac disease hasn't yet developed enough to register a positive test?

(2) Has anyone tested NEGATIVE with EnteroLabs? From what I've read on this board it seems everyone gets a positive diagnosis from them (including spouses). While I'm the first person to believe that most, if not all the world should not be eating gluten and may in fact be intolerant of it, I question any lab that consistently gives the same results (positive or negative). Whereas, a positive diagnosis would make my life easier, I do want a legitimate answer. Guess I'd feel more willing to pay if I knew ocassionally people do get a negative results through EnteroLab.

I just want to be done testing whether or not I ever get a positive result. I am actually eager to get back to a gluten free diet. I am so incredibly irritable on gluten that I can't stand to be around myself.

Traci

[gf4life]

Hi Traci,

Welcome to the board! I hope I can answer your questions adequately.

Okay, at least one parent has to carry the gene to have the child get true Celiac Disease. There are forms of non-Celiac gluten intolerance, but they are only now starting to realise this and it is not currently being researched to my knowledge. (I can e-mail you a good paper on this if you would like. Although it is posted on this site and you may have already read it) If the parent who carries the gene is not currently sick from gluten, YES it would be wise to be gluten free, and you will avoid getting sick later on. Plus it is much easier on your child to eat the same as mommy or daddy. They don't feel so left out or strange.

As for the negative test results, YES people do test negative with Enterolabs, but you won't find very many here, since they don't have to live gluten free and they won't be visiting a site for gluten intolerant people. But some people here do have relatives who have tested negative with Enterolab. I e-mailed Dr. Fine with Enterolab to ask him that specific question. He could not give me a set ratio of positives to negatives since it changes all the time, and he did say they tend to get more positives, but that is the nature of the testing. People who come to him for testing do so because they most likely have the disease and either don't want conventional testing or can't get it. So if only people with symptoms and their families do the Enterolab tests chances are that a lot more of them are going to test positive than if they just picked up a random group of people off the street and tested them.

Well I hope this helps. I know what it feels like to be skeptical, and it certainly doesn't help to know that the conventional medical field does not back these tests yet, but they are more than a decade behind the times, and the tests have only been available for about 5 years. It can take up to 20 years for new tests to be accepted as valid in the medical community, but Dr. Fine didn't want to wait that long to help people so he made them available to us now. I am glad, and I am having all three of my children tested with them, since their blood tests keep coming back inconclusive and I want a YES or NO answer, not a MAYBE. I carry the gene (and have positive antibodies), and if they also carry the gene they will be gluten free right along with me whether they have positive antibodies or not!

God bless,

Mariann

[Phoebe2]

posted wrong?

[lovegrov]

I would pretty much agree with the first answer you got. If your child has it one of you has the gene. There are, however, people who have the gene and are not sick with celiac. I can't name one right off the bat, but there are other diseases or conditions where this is also true. People are gene carriers but not necessarily sick. Many celiac experts think some carriers (not all) require a "trigger," something like childbirth, surgery, major stress or a major illness before they get sick. While I look back and see I had some symptoms of intolerance earlier, I didn't get REALLY ill until I got the flu a couple of years ago.

I'd also agree that at a forum like this you're only going to find people who tested positive. No offense to the people here, but I certainly wouldn't be hanging around if all my tests had come back negative (I was tested by traditional methods, not Entrolab -- and, yes, they were all HIGHLY positive).

richard

[DLayman]

You have had the antibody tests done did they actually give you the numbers or just tell you they were negative? Also did you have the DNA test done? Like you have been told you could have the gene and not have the antibodies as of yet.

Also if they did not actually give you the numbers or a copy of the report request it.. you could have a low positive which in your doctors opinion could be a negative result and might be in error.

check it out!

Denise

PS when your family insists that you give your child these items that make her sick.. these 'treats' say ok.. but then YOU can have the 'treat' of changing her diapers! They will probably back down!

[plantime]

I agree with Denise: if someone wants to give your child glutenous "treats," then that same someone can take care of your child until the reaction passes!

[YankeeDB]

Just for completeness, wanted to mention that there are plenty of gluten-free treats that can be given to a child--cookies, brownies, you name it. Perhaps if there is a social situation where treats will be available, you can take some of these so your child will never feel deprived and others won't make you feel like you are Simon LeGree.

[dana-g]

Try throwing around the words "intestinal atrophy" and "leaky gut" and see if that doesn't help. Sometimes I wish celiac disease made us bleed, then goofy friends and relatives might understand that we really have a bona fide disease!

[luciddream928]

Hi, I just got my results back today and i tested negative. Not sure what that means though, since I seem to respond to a gluten-free diet.

[ShayFL]

Lucid, it means you found your answer.

Yeah if eating gluten made us projectile vomit and sweat skunk odor NO ONE would feed us gluten......LOL

[fedora]

my daughter tested negative at Enterolab. She had a result of 9 with 10 and up being positive. However, she is responding well on a gluten free diet. They told me with a result of 9 and her lower total IGA levels she coul be having a reaction so she is on a trial diet. That is the real indicator especially if your child has been very ill like yours.

Blood tests can be unreliable.

Having the genes doesn't mean you will get celiac.

good luck