I really need some help with my enterolab results.

[Lucy]

If that doesn't work, you might do a post to Polly. Maybe she could help you....OR, you might talk to his nurse and ask her to ask him about it directly.
Let her know it's not a consultation you are looking for, but just an explanation of whether or not this could be an error. Just an explanation isn't a consultation -- a telephone consultation would involve a charge, I'm sure.
I know in the past, they have always been good about making suggestions.
Dr. Fine used to be able to respond to e-mails himself, but the lab apparently just kept growing, so he hired a very experienced nurse to help him. I think she can always ask him when she gets stumped on a problem.

Yours, Luce

[no-more-muffins]

I actually called again this morning so I could talk to the nurse. She wants me to fax my lab results so she can look over them. I haven't had a chance to get to the hospital to get the hard copy of the results. When I got the results they actually gave them to me over the phone (which is very rare because I know they aren't supposed to do that.) I am going to try to go to the medical records office later this afternoon.

[tex]

NMM,

I think that everyone, (except for me), incorrectly assumed that your tTG, and/or IgA deficiency test, was done at Enterolab, and I suspect that's why you're getting all these responses suggesting that you contact Dr. Fine. Or am I the one who's confused?

While it's certainly possible that Enterolab might have made a mistake with your food intolerance tests, it's the tTG result, that I really question, (and the IgA deficiency test of course). Why were you even given an IgA deficiency test? I'm sure they had a reason, but maybe they routinely give it along with their other testing, for all I know. If you're talking with Phyllis Zermeno on the phone, (at Enterolab), - she knows her stuff, (she's the clinical manager).

Tex

[no-more-muffins]

Oh, sorry for the confusion. The tTG test was a blood test done at a different lab. I had the 'celiac panel" which consisted of the "total IgA and the tTG".

[Lucy]

NMM,

That's the way all the blood tests should be done -- WITH the IgA if that's what they are also testing -- your ability to make antibodies in same category, in other words.

Well, perhaps the lab would do your ttg again, just in case, or at least the doc could order a repeat.

I read on the C.Thompson site where it has the General information with Q&A's that Dr. Cynthia Ruddert still does one of the older tests. I'm not sure what it was, but I think it may be to help when the IgA isn't able to do it's job.
Does anyone else remember reading that? Polly, do you remember what that older test is? I think it may have begun with "r." I wonder if other doctors ever revert back to that one. I'm not sure what it exactly reveals, however.

You might want to read through some of those Q&A's to see if you can find what blood test it is they do. Unfortunately, the docs take turns answering questions, so you can't tell until you open one which one of them is Dr. Ruddert's answer, but it's interesting to see the contrast among all the doctors. I suppose newbies have already formed an opinion by the time they find that site! Ha!

Best wishes in solving this thing. Luce

[no-more-muffins]

I talked to Phyllis at enterolab and she said that she has heard of having a of a 0 tTG on the blood test (on rare occassion). She said that from the results that she saw I was not IgA deficient. The tests may have been messed up but basically I am one of those people who just doesn't seem to be able to get any answers from traditional (and non-traditional) testing.

Basically she told me to keep track of what makes me sick and eliminate those things. I feel frustrated because I was hoping to get more clear-cut answers from doing these enterolab tests.

I am finally starting to feel a bit better from my glutening last week. Slowly, each day gets a little better. I am about 99.9% sure that I am gluten intolerant. It would just be nice to have SOME real validation, especially when I talk to other people. And I am still unsure what to do about soy and casein.

I forgot to add that I have also had periodontal disease and endometriosis (both at least somewhat suspicious in relation to gluten intolerance). Doesn't it seem strange that I didn't get a positive test from enterolab? I guess I am the first around here who isn't "satisfied" with their enterolab results. I don't blame them or think it is THEM, but I do feel a bit gypped that I spent all that money and still don't have any real answers.

[tex]

Doesn't it seem strange that I didn't get a positive test from enterolab? I guess I am the first around here who isn't "satisfied" with their enterolab results. I don't blame them or think it is THEM, but I do feel a bit gypped that I spent all that money and still don't have any real answers.

Yes, it certainly does seem strange, and to be honest, you are the first person I have ever heard of, not only on this board, but anywhere, who isn't satisfied with your Enterolab test results. Unfortunately, there are no guarantees in the medical world. A little over 9 years ago, I was referred by my doc to a GI doc, to determine why I had uncontrollable diarrhea, and he sent me to the clinic for test after test, but he never found anything wrong with me. The tests added up to many thousands of dollars, of course.

Tex

[kscolorado]

I still frequent the IBS boards because I've made pals there with some gluten free and I see quite a few negative enterolab results. I think that since we are a forum where gluten intolerance is more abundant, that is why we see more positives and validations to what is causing our symptoms. On the IBS board, they have a lot of intelligent people who have done all testing under the sun. Many have tried the gluten free diet without success. One thing that shows up quite a bit is that some are resistant to the starches of wheat and other grains, so they have symptoms but not from gluten, if that makes any sense. I'm not saying that No More Muffins is only IBS just that sometimes grains bother you for other reasons than gluten intolerance. If you are reading this No More Muffins, don't worry about what other people say about your diet. Frankly its none of their business, you should do what makes your body feel good. Dietary response is a test itself, so you have a positive test that way. As tex says, celiacs will have the last laugh because we are healthier in the long run!

[tex]

Kathy,

That's a very good point. It's certainly possible to have digestive issues, due to being unable to properly digest certain starches, (carbohydrates), without triggering an autoimmune reaction that results in inflammation of the intestines. The digestive system is extremely complex, and there are virtually zillions of places where things could go wrong.

As tex says, celiacs will have the last laugh because we are healthier in the long run!

There's kind of a sad footnote to that remark, that I feel obligated to bring up. While it's generally true that the GF diet is healthier than the diets followed by most members of the general population. If you look up mortality rates for celiacs, compared with the general population, you will find all sorts of depressing data, and comments on not only increased rates of non-Hodgkins lymphoma, but even a higher overall mortality rate, (for celiacs, versus the general population). If you read the details of the studies, however, you can readily see that the higher mortality rates being reported, are not due to disease - they are due to higher rates of suicides, and accidents. While it is true that celiacs are maybe five times as likely to develop a form of non-Hodgkins lymphoma, when compared with the general population, the statistical odds of anyone in the general population developing non-Hodgkins lymphoma, is a very tiny number. Five times a very tiny number, is still a very tiny number - it's hardly worth mentioning. It is clear from the data, that the problem appears to be connected with the fact that many celiacs are, (or become), either depressed, or risk takers, or both - thus making them much more vulnerable to suicide, and/or fatal accidents.

No one has come fourth with proven evidence of why that is occurring, of course, but it is speculated that some celiacs may be predisposed to risk taking, possibly because of the existence of neurological damage caused by gluten, or genetic factors, or because they may be depressed at being "required" to follow such a rigid diet, and being restricted in their social activities, because of the diet. IOW, they feel "deprived", and this may inspire some individuals to develop an "I don't care", or "mad at the world" attitude, thus causing them to occasionally take unnecessary risks, because they feel sorry for themselves. Risk takers obviously have a much higher mortality rate than the general population, and suicide attempts are an added risk with depression, of course.

I don't believe that we've ever discussed that sad connection on this board, before, though we are all well aware of the depression issues so often connected with these gluten-linked diseases. The fact that some in the medical community, and a few self-appointed, "don't-follow-the-diet-without-a-diagnosis-of-CD", lay "experts", seem to have attached a stigma to the GF diet, doesn't help any.

Thanks for posting that information.

Tex

[kscolorado]

I can see that Tex. My BIL who is a diagnosed Celiac, WAS drinking a TON of alcohol. Mainly Ciroc (a very expensive grape distilled vodka) and tonic to the point where he was always drunk. He used to kid that he can't eat anything but he CAN drink! Luckily he got pulled over for a DUI and now after having to attend alcohol classes he only has a bottle or two socially of redbridge. So if he kept going the way he was, he could easily have had a car accident ect. He suffers from gluten ataxia, anxiety, panic attacks, ect and all celiac related. He was using the alcohol as a quick fix and to help him not focus on these issues. He is very faithful to gluten free though to the point of outsiders thinking he is crazy. He is seeing a counselor and was put on Prozac 6 months ago. He is now engaged to be married next March to a wonderful girl that likes to make him gluten free cookies. We hope the best for him and that he will keep healing. Thanks for bringing it up, I am hoping that i am only gluten intolerant but just discovering my gene's I will try even harder to stay as gluten free as possible!

[no-more-muffins]

I have been reading in the "Healthier Without Wheat" book by Dr. Wangen and it has given me a new direction to look. He says:

"Gluten seems to be responsible for most reactions to wheat. It is also possible to have an allergic reaction to wheat without gluten being involved....With a non-gluten reaction to wheat, all gliadin, gluten and celiac testing will be negative. But tests that measure your reaction to whole wheat (rather than only to gluten) will be positive....This is not a traditional wheat allergy. It is really a chronic wheat allergy, equivalent to a gluten intolerance but to another component in the wheat....Some component of the grain other than gluten (gliaden) is the problem."

So, he basically says what the others said earlier. There could possibly be something else in the wheat that I react to.

I am trying to see if I can find a place that does IgG testing for whole wheat or maybe the glutenin proteins. I think the lab that Dr. Wangen is associated with does that testing but I don't know yet how to go about it or whether it would really be worth it.

My hubby and I decided to get our other kids tested, at least the blood tests to start with. If those come back negative I think we'll move on to stool.

I actually convinced my husband to get screened as well, even though he is sure he doesn't have it. I wanted to get him checked because he has been having abdominal cramping, looser stools, lots of headaches, neck pain, carpal tunal syndrome, acne, and weight gain, nasal congestions, "allergies", red eyes, heartburn, tired all the time, dark circles under his eyes.... (Sounds like symptoms to me... I guess I just figure if we are already doing gluten free at home he might as well do it all the time.
Besides, if our baby has it, maybe she got it from HIM.

Which brings me to another question: If I don't have a gluten problem, but a different wheat intolerance, how does that fit with my daughter's gluten intolerance? Could we both share a same gene and develop a different intolerance, or would she have to get that gluten intolerance from her Dad?

[kscolorado]

Sounds like a good plan NMM. I remember reading on the CSA (celiac sprue association) library archives that up to 40% of americans carry celiac genes and never develop it because the gene never gets turned on. She could have got them from you, your husband, or both. Good job of convincing Hubby! Mine only had the blood work and when it came out negative he took it an ran and still keeps gluten in his diet. His brother is a diagnosed celiac with negative blood work, negative biospsy, but positive dermatitis herptiformis diagnoses. My husband doesn't get the rashes so he thinks he's good to go. He has hypothyroid and has to take prilosec every night for heartburn....good luck to your family and keep us posted!

[tex]

His brother is a diagnosed celiac with negative blood work, negative biopsy, but positive dermatitis herptiformis diagnoses.

You know, one would think that cases such as your BIL's, (with both negative blood work, and negative biopsy, and yet an indisputable marker of CD), would be enough to suggest to the medical "experts" that their diagnostic criteria are sadly lacking.

One thing you have to admit - your husband is a dyed-in-the-wool optimist, isn't he. I'm sure both genders are prone to that attitude, but I suspect that men are probably more likely to think that way, (speaking from experience. ).

Tex

[tex]

NMM,

You might be sensitive to one of the other gliadins in gluten, rather than the alpha-gliadin, on which sensitivity tests are based. Or, you could be sensitive to one or more of the problematic glutenin peptides, (which most celiacs are sensitive to), without being sensitive to the alpha-gliadin.

Here's a research report where the researchers demonstrated that the intestinal T cell response to alpha-gliadin in celiac disease is centered on two immunodominant, DQ2-restricted peptides that overlap by a seven-residue fragment of gliadin. This offers some insight into the way that the reaction takes place, in the case of sensitivity to the alpha-gliadin, (as is the case with most celiacs).

http://www.ncbi.nlm.nih.gov/pubmed/10684852

Which brings me to another question: If I don't have a gluten problem, but a different wheat intolerance, how does that fit with my daughter's gluten intolerance? Could we both share a same gene and develop a different intolerance, or would she have to get that gluten intolerance from her Dad?

Actually, you probably do have a gluten problem, you just may not have a problem with the alpha-gliadin that is used as a basis for sensitivity testing. To answer your question, though - Sure. Having the gene, simply confers susceptibility/predisposition. It's a necessary condition, but the presence of the gene is not sufficient in itself, to guarantee development of any disease, nor does it dictate the details of how a disease might manifest itself in any particular individual, who also has those genes, in the event that disease does develop. Your daughter got one HLA-DQ gene from you, and one from your husband. If you order a gene test for her, you can see which genes those are, but you still won't know which one she got from you, and which one she got from your husband. You might be able to figure that out, though, if both you and your husband order gene tests, and you compare the results.

Tex