Hi Tex or anyone else with an opinion here...just got the kids' results back from Enterolab. On the advice of Dr. Lewey, I only did the antigliadin for everyone, and the results were not very surprising...normal levels, of course, are <10. We had one at 12, one at 15 and one at 21. What was surprising was that the one with the fewest symptoms is the one with the highest number. My question for you is what your opinion is on the numbers themselves--does it matter how high they are, like cholesterol--the higher the number the worse the disease, or, is like being pregnant--you either are or you aren't, there is no continuum? I'm feeling a bit like at least 2 of them are borderline, but I'm not sure. The email does suggest that they are all gluten sensitive and should all be gluten free, but I'm having trouble wrapping my brain around there being no depth of severity.
I am also wondering if we should pursue genetic testing to see if any of them are blessed with the double celiac genes like I have. We know they each have one...Perhaps it's only to satisfy my own curiosity, but perhaps that would make the decision easier to have them go gluten free or not. Selfishly, it would make my life a whole lot easier to have them all gluten free, but I don't want to make a lifelong decision for them based on that.
Any thoughts are appreciated here!
Wendy
Tex-or anyone else-Enterolab question
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kate_ce1995
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I think Dr. Fine would say, you either are or aren't sensitive. When I was toying with the idea of going gf, I remember asking, if I'm sensitive but not allergic can I eat gluten once in a while and the answer was that it wasn't recommended because it is essentially like adding a poison (that wasn't the word he used, but you catch the drift) to your body each time you eat gluten if you are sensitive.
I think the further proof is in how the kids have reacted to being gf. Have you stuck with it so far? Are their symptoms still lessening? If I remember right, you have smart, intuitive kids. Be open with them about how big a lifestyle change this will be if that is the route you go.
Katy
I think the further proof is in how the kids have reacted to being gf. Have you stuck with it so far? Are their symptoms still lessening? If I remember right, you have smart, intuitive kids. Be open with them about how big a lifestyle change this will be if that is the route you go.
Katy
Hi Wendy,
I agree with Katy. And I know Dr. Fine would say that depth of severity is not an issue when it comes to gluten......anything over 10 is positive. It's like pregnancy, as you say, or a pass/fail test.
And I agree that the proof of the pudding is how the kids feel clinically after avoiding gluten. Not to scare you, but if one is gluten sensitive and continues to eat gluten, it is possible (but not common) to get a cancer of the small intestine. The gene tests would be interesting info but really wouldn't affect your GF decision - especially if improvement occurred on the GF diet. That said, more info is always good when it comes to dcoumenting most health conditions, so I wouldn't discoutage you if you wanted more scientific evidence.
Good luck with your new way of cooking. How is it going, BTW?
Love,
Polly
I agree with Katy. And I know Dr. Fine would say that depth of severity is not an issue when it comes to gluten......anything over 10 is positive. It's like pregnancy, as you say, or a pass/fail test.
And I agree that the proof of the pudding is how the kids feel clinically after avoiding gluten. Not to scare you, but if one is gluten sensitive and continues to eat gluten, it is possible (but not common) to get a cancer of the small intestine. The gene tests would be interesting info but really wouldn't affect your GF decision - especially if improvement occurred on the GF diet. That said, more info is always good when it comes to dcoumenting most health conditions, so I wouldn't discoutage you if you wanted more scientific evidence.
Good luck with your new way of cooking. How is it going, BTW?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Wendy,
I can only agree with what Katy and Polly have already said so well. Wow! All three tests showing positive results - that's pretty impressive.
Concerning the gene test, as Polly said, the gene test is interesting information, but shouldn't affect your decision in this situation. A positive gene test simply indicates the presence of one or more genes that predispose one to develop gluten sensitivity. It does not guarantee that gluten sensitivity will ever develop, merely that it's a possibility. Since you already know that you are all gluten sensitive, that virtually guarantees that each of you has at least one gene that qualifies you. With a unanimous response rate, I'm guessing that you all probably have at least one copy of a celiac gene, but that's just a guess. Good luck with your program.
Tex
I can only agree with what Katy and Polly have already said so well. Wow! All three tests showing positive results - that's pretty impressive.
Concerning the gene test, as Polly said, the gene test is interesting information, but shouldn't affect your decision in this situation. A positive gene test simply indicates the presence of one or more genes that predispose one to develop gluten sensitivity. It does not guarantee that gluten sensitivity will ever develop, merely that it's a possibility. Since you already know that you are all gluten sensitive, that virtually guarantees that each of you has at least one gene that qualifies you. With a unanimous response rate, I'm guessing that you all probably have at least one copy of a celiac gene, but that's just a guess. Good luck with your program.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks everyone...I have to agree with you all...with mixed feelings, though. It certainly will be easier at home with the entire house gluten free, the hard part, as you all know, is eating out and when they're away from home. The kids have been back on gluten and haven't been reporting any GI symptoms, but I think there are other ones present, so it will be interesting to see how going off the gluten once again will affect them. They all seemed like it was going to be a relatively minor blip n their radar screen, so I think they understand the importance of it.
Polly, in answer to your question, it's been going very well for me. I have had no trouble at all being gluten free, though I'm not completely convinced that I haven't been getting cc'd since my D has yet to clear up. The dairy has been much harder for me to give up! I have found some amazing recipes that I've been able to adapt to gluten free--the problem is that I'm enjoying them way too much!!
My thinking on the genetics of it all is to have some more solid scientific backup for when they all start to question why they have to be gluten free. It's going to happen at some point, and though the one test should be enough for them, in the minds of teenagers, I can see it not being enough. For now it will have to be, unless I can get the insurance company to pay for it, though!
Wendy
Polly, in answer to your question, it's been going very well for me. I have had no trouble at all being gluten free, though I'm not completely convinced that I haven't been getting cc'd since my D has yet to clear up. The dairy has been much harder for me to give up! I have found some amazing recipes that I've been able to adapt to gluten free--the problem is that I'm enjoying them way too much!!
My thinking on the genetics of it all is to have some more solid scientific backup for when they all start to question why they have to be gluten free. It's going to happen at some point, and though the one test should be enough for them, in the minds of teenagers, I can see it not being enough. For now it will have to be, unless I can get the insurance company to pay for it, though!
Wendy
Wendy,
I agree with you that at some point one or more of your kids will surely want more evidence. It's a shame that the DNA tests are so expensive, but, (like so many medical tests), analysis on a molecular level requires expensive equipment, and the necessary skills to interpret the test results. I think there are other ways to to derive gene information, (older technology), but I believe that Enterolab uses the most up-to-date technology available. Obtaining the sample is very easy - you just swab the inside of your cheek with a special, (totally sterile), swab, let it air dry, and then put it in the sterile packaging which is provided, and send it to the lab.
I have to admit that I couldn't resist getting the test myself, after the fact. I have one copy of the most common celiac gene, and a non-celiac, (but still gluten sensitive), gene. In case you haven't seen it, and you're interested, here's a compilation of the results for most of us who have been tested:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
Tex
P S Oops - I see that you are already on the gene test list, so you obviously know how the test is done, but I'll leave that information in this topic, for the benefit of newbies.
I agree with you that at some point one or more of your kids will surely want more evidence. It's a shame that the DNA tests are so expensive, but, (like so many medical tests), analysis on a molecular level requires expensive equipment, and the necessary skills to interpret the test results. I think there are other ways to to derive gene information, (older technology), but I believe that Enterolab uses the most up-to-date technology available. Obtaining the sample is very easy - you just swab the inside of your cheek with a special, (totally sterile), swab, let it air dry, and then put it in the sterile packaging which is provided, and send it to the lab.
I have to admit that I couldn't resist getting the test myself, after the fact. I have one copy of the most common celiac gene, and a non-celiac, (but still gluten sensitive), gene. In case you haven't seen it, and you're interested, here's a compilation of the results for most of us who have been tested:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
Tex
P S Oops - I see that you are already on the gene test list, so you obviously know how the test is done, but I'll leave that information in this topic, for the benefit of newbies.
No problem, Alice--I found it! If I may ask, how did you know to get tested for gluten sensitivity if you had no symptoms? I guess I had symptoms for years but never knew it, so it can go either way! I have to say it is very ironic to me that the kid with the fewest symptoms had the highest number. Though from what everyone is saying, it appears as though the numbers themselves don't matter--just the fact that you have elevated levels is enough.
So...it looks like we'll be a totally gluten free household, which, I have to admit, is pretty appealing to me! I think they'll adjust fine, especially since we have found several gf breads, etc. that they all like.
And, at least if we decide to do the gene test it will be an easy one to convince them to do--unlike the stool sample. They were none too pleased about pooping into that cool whip container!
Have a great night...
Wendy
So...it looks like we'll be a totally gluten free household, which, I have to admit, is pretty appealing to me! I think they'll adjust fine, especially since we have found several gf breads, etc. that they all like.
And, at least if we decide to do the gene test it will be an easy one to convince them to do--unlike the stool sample. They were none too pleased about pooping into that cool whip container!
Have a great night...
Wendy
Wendy
This was included in an E-mail from Dr. Fine in 2003. It made a lot of sense to me at the time and even more sense these years later with what I have discovered I can and can not eat.
"Many people assume that a lower positive antigliadin antibody value may not be as significant as a higher positive value and inquire how their
antibody result compares to the range of potential measurable values. It
seems they ask this question to determine how severely they are reacting to gluten and hence, whether or not they need to be fully strict and compliant with a gluten-free diet. Actually, this is not the case. People with low-positive antigliadin antibody values can suffer the same health consequences as those with values of 100, 200, or higher. An analogy would be trying to use the level of antibodies to penicillin in a person who has had an allergic reaction to penicillin to determine if it is safe to take penicillin again. This obviously is not done because those with demonstrated penicillin allergy could not take penicillin without the risk of suffering severe health consequences. Although gluten sensitivity is not a true allergy like penicillin allergy, the concept is the same. Thus, any positive antibody value to a food substance indicates that the immune system considers it foreign-enough to make antibodies against it (as if it is an infection), and continued consumption can have adverse consequences on your health. If you already have any symptoms or syndromes associated with gluten or other food sensitivities, and especially if you have intestinal malabsorption, damage to the body is already occurring and a strict gluten-free diet is imperative. If you do not have malabsorption or such symptoms/syndromes consider yourself fortunate and strictly follow a gluten-free diet to prevent them."
It would appear to be a long study. Then clarity. Hope this brings some clarity.
The very best from your neighbor-
Matthew
This was included in an E-mail from Dr. Fine in 2003. It made a lot of sense to me at the time and even more sense these years later with what I have discovered I can and can not eat.
"Many people assume that a lower positive antigliadin antibody value may not be as significant as a higher positive value and inquire how their
antibody result compares to the range of potential measurable values. It
seems they ask this question to determine how severely they are reacting to gluten and hence, whether or not they need to be fully strict and compliant with a gluten-free diet. Actually, this is not the case. People with low-positive antigliadin antibody values can suffer the same health consequences as those with values of 100, 200, or higher. An analogy would be trying to use the level of antibodies to penicillin in a person who has had an allergic reaction to penicillin to determine if it is safe to take penicillin again. This obviously is not done because those with demonstrated penicillin allergy could not take penicillin without the risk of suffering severe health consequences. Although gluten sensitivity is not a true allergy like penicillin allergy, the concept is the same. Thus, any positive antibody value to a food substance indicates that the immune system considers it foreign-enough to make antibodies against it (as if it is an infection), and continued consumption can have adverse consequences on your health. If you already have any symptoms or syndromes associated with gluten or other food sensitivities, and especially if you have intestinal malabsorption, damage to the body is already occurring and a strict gluten-free diet is imperative. If you do not have malabsorption or such symptoms/syndromes consider yourself fortunate and strictly follow a gluten-free diet to prevent them."
It would appear to be a long study. Then clarity. Hope this brings some clarity.
The very best from your neighbor-
Matthew
Hi Wendy,
I heard him give the results of his study still awaiting publication in Dallas the spring of '06. I knew lots of what he'd present after all the studying I'd done in the years preceding, but the results went along with what we'd already learned in this group, basically.
It was nice to learn how he came to study the topic. He followed the research that had been started a number of years ago, and then, abruptly stopped in pursuit of finding out more about the more exciting IBD's like Crohn's and UC, it would appear. Somehow, the researchers in the interim forgot about MC, that is up until Dr. Fine began his research at Baylor Med in Dallas a number of years ago.
Yours, Luce
I heard him give the results of his study still awaiting publication in Dallas the spring of '06. I knew lots of what he'd present after all the studying I'd done in the years preceding, but the results went along with what we'd already learned in this group, basically.
It was nice to learn how he came to study the topic. He followed the research that had been started a number of years ago, and then, abruptly stopped in pursuit of finding out more about the more exciting IBD's like Crohn's and UC, it would appear. Somehow, the researchers in the interim forgot about MC, that is up until Dr. Fine began his research at Baylor Med in Dallas a number of years ago.
Yours, Luce