Giveing Emmah Gluten

[vampella]

I'm crying and shaking. I called her Dr today. He called back and we had a talk. he's going to find out about gene testing for me. If they will let us, we are going to do it.

He said we have 2 other options.

ONE- since we saw a GI here who was terrible, he can and would refer us to Toronto. That's not an option for us at this time.

TWO- give her gluten and do the tTg again, if we see a rise then we know and she can be Dx'ed right there.

My mother told me I was abusing her for even thinking about option number 2. I agree but it seems like my only choice at this point.

Right now she's having a PB sandwhich on wonder bread(whole wheat).

Wish me luck.

[vampella]

forget that above post, I can't do it, I just can't.

I am going to wait for the Dr. to get us gene testing because I'm not strong enough to challenge it.

I can not do it. sorry about the waisted post!!

Run a long, now!!

[Lisa]

Char:

You know, the choice is yours to make. I can only assume how difficult it is to feed you daughter things that will make her sick.

I think a gene test would be the thing to do. And return to gluten free. I hope with this decision will relieve you anxiety.

You sound like a very good mom.

[Jestgar]

Not wasted.

Sending you all the support I can through the atmosphere.

[jerseyangel]

I want to add my support, too. And, for what it's worth--if I was in the same position with one of my boys, I'd have done the same thing.

[Ursa Major]

Not a wasted post at all. It shows what people with celiac disease or gluten intolerance face these days, because doctors refuse to diagnose just by diet response. I don't think he should have even suggested option no. 2.

I am glad you can't do the diet challenge with Emmah. Poor little tyke has suffered enough already.

Can you afford Enterolab? I asked them, and just the gene test is $145.00 (US). I think I'll do that some time soon, just to know what my genes are, and if I have celiac disease or 'just' gluten intolerance.

If you are in Canada, OHIP will likely not cover gene testing (they didn't even cover the regular celiac panel for my youngest daughter, we had to pay $125.00, and then they didn't even give us the numbers, just a general 'everything negative', not even my doctor got the numbers-what a waste of money). You might as well just do Enterolab, it will be less trouble, faster and easier, without having to draw blood from Emmah, unless you have additional insurance coverage.

[vampella]

I feel so bad for thinking I could do option number 2 because Emmah vomited and wont eat her dinner. She say's her tummy hurts.

I have thought about enterolabs but I'm unsure of them. If no one in manitoba will do it for me, then I will do gene testing with Enterolabs.

Manitoba health will not cover the gene testing for me, that I know. I'm ok with paying for it. here or enterolabs.

I told my dh atleast if I get gene testing done and she has the gene, I'll know it's celiac & if she doesn't have the gene then I'll know it's gluten intolorence.

I also had problems when I tried to get "numbers" from my doctor and from Emmah's, they don't even tell the doctor, just that they say it's neg. So you could be on the inconclusive line and it would stuill be neg.

Thanks for your support. I don't know why I seem to ned to know these day's, I was fine until we saw that GI.

Now I will know, with the gene testing.

I don't know if I said this already but I got Dr. peter greens book in the mail today, LOVE IT. Thanks to all that recommended it.

[vampella]

One mroe thing, Ursa, what a beautiful baby. you must be such a proud Oma!!

[rez]

Char, I know this is hard, but follow your gut. It's a huge decision to make for a child and I know we have talked about this before. One VERY important thing I wanted to tell you about the gluten challenge is that a gluten challenge is meant for a biopsy, not a blood test. The blood test will not show abnormalities as quick as the biopsy. Also, if you're going to do a gluten challenge, it takes a month of ingesting gluten. I think it talks about the Marsh system and a gluten challenge in Dr. Green's book. The key is to have a great GI and an even better pathologist reading the tests. You need to have a plan with a GI before you start a challenge. They need to be looking for the slightest little abnormalities. Marsh 1 damage is very subtle and the pathologist needs to stain and count the cells. It's a huge decision to make, I know. I'm living it. This is my philosophy. An adult makes their own choices. For my child, I need to do the best I can with what I know. I know Thomas feels better on a gluten free diet, but there are many conditions that will respond to a gluten free diet, not just Celiac. I want to TRY to get an accurate diagnosis for Thomas, notice that I said TRY. My fear is that, yes I could keep him gluten free at home until he turns 18, but then what happens. He goes back on gluten and has no symptoms. Does he have Celiac or doesn't he? It could takes months or years for symptoms to reappear. This disease is strange in the fact that it affects everyone so differently. For me, I am doing the best I can. Thomas is undergoing a gluten challenge and we have partnered with a fabulous GI. He is world renown. He started the University of Chicago Celiac program and he said he has an unbelievable pathologist. I trust him. Another thing, if you think you need a diagnosis, after going gluten free for over a year it's very hard to attain one with a gluten challenge. It's probably something you'll need to have sooner than later if that's the path you decide to take. Everyone has their own opinions and I DO NOT want to start a debate. I think too many times on this board things turn into a debate instead of supporting eachother. I can understand both sides to your story and you are not alone. We all struggle as parents and we're all just trying to do the best we can for our children. Also, we can't generalize. What's right for one, might not be right for another. We also can't generalize and say gluten challenges never work. This is untrue. It depends on your doctor and pathologist and the individual patient. There is a lot of information floating around out there and it's hard to tell know what to do. If I had a crystal ball, I would read it for both of us!!Follow your gut as a mother and don't let anyone push you around or tell you what's best for you. All you can do is look at the facts and follow your heart. If this disease wasn't so unpredictable it would be so much easier to manage. Good luck and please keep me posted. Again, I don't want to get into a debate with other posters on Gluten challenge vs. non-gluten challenge. I just wanted to post to show Char that I understand completely and support her either way.

[rez]

Just read your new post. Sounds like you've decided against the challenge. I'm glad you're feeling better, and I hope the gene test will bring you even more peace of mind. Hang in there!!!

[rez]

PS. Just re-read it again. If her reactions are that quick w/ vomitting, I think you HAVE your answer and diagnosis. I'm not sure if it's good or bad, but Thomas' reactions aren't that clear cut. Sorry for the three posts!! Have a great night!

[Ursa Major]

One mroe thing, Ursa, what a beautiful baby. you must be such a proud Oma!!

Thank you, yes, she is awfully sweet (and so are the other six grandkids, of course)

As said before, if Emmah vomited and has tummy aches so soon after one sandwich, you really have your answer. Also, you simply can't keep feeding her gluten with such a strong reaction the first day! It could kill her. So, obviously, it's not even an option any more.

The problem with regular gene testing is, that they only test for the officially known celiac disease genes (and they admit that they aren't all identified yet). While Enterolab tests for those celiac disease genes, as well as for gluten sensitivity genes. So, with them, it's not just a matter of a diagnosis of elimination (if she doesn't have the celiac disease genes), but you'll know for sure.

Isn't it pathetic that the lab won't even supply the numbers to the doctors? Of course, if the doctors would be smarter and better informed, and insist on getting the numbers, I am sure they'd get them. But because doctors are happy with just getting an answer of either 'negative' or 'positive', why would the labs bother supplying more info?

Of course, if more patients made a fuss about having to pay out of pocket for such incomplete information, maybe they'd all smarten up. In fact, when I see my doctor next week for a follow up visit for my thyroid, I'll mention that I would appreciate it if she could get me those numbers for Susie from the lab. I am sure they must have them! Since that lab uses outdated values for thyroid testing, why should I trust them to interpret the celiac panel right?

For that matter, why is it that we have to pay out of pocket for essential testing, when they'll use our tax dollars to pay for sex changes and abortions, which are not essential, and cost a fortune (not to mention that a lot of people don't agree with having to pay for those, but are forced to, because they are not asked what they'll want to support with their taxes)?

[happygirl]

Char,

Definitely not a wasted post! I'm sorry that you are having to go through this. Sometimes we have to tell ourselves to do the right thing, even if its not the easiest (not having a definitive answer)....and you are doing just that.

I'm happy you are enjoying the book. There are some points that I don't agree with, but as a whole (about 98%), it really is the best reference/medical book out there about Celiac.

Laura

[vampella]

so Emmahs tests from enterolab are in the mail. I cant wait to get them. and then the results.

[Fiddle-Faddle]

For what it's worth, I'm convinced that celiac disease (i.e., the damaged villi) can and does occur in gluten-intolerant people who don't even have the celiac genes (there are some on this board!) . It happens when they continue to eat gluten

At this point, I'm not sure it matters what the tests say. Your daughter vomits after eating gluten. Her body is obviously treating it as a poison.

IF that doctor's own daughter had such reactions, you can bet your boots he wouldn't force-feed her gluten. I mean, WHY? But that's like saying, "Gee, we know eating peanuts can cause an anaphylactic reaction in people severely allergic to peanuts, so we want to you to feed your daughter peanuts and not stop UNTIL she has that anaphylactic reaction. Then, and only then will we admit that she shouldn't have peanuts."

I think there are many causes of gluten intolerance, and it's very complicated. Because there is so much unknown territory here, a lot of the testing is kind of like a fishing expedition. The doctors don't exactly know what they are looking for, so they rely on the outdated practice of trying to find villi damage caused directlyand obviously by gluten. Then they can say with confidence, "Yes, this is celiac." But if you don't have damage--then what? What if your body (for whatever reason) simply vomits out the gluten before it even GETS to your intestines? So then, you would have perfect, healthy villi, and they would say, what that it's not celiac? Does that mean they think you should still eat gluten?

I think that what is causing gluten intolerance (celiac genes or "something else") in your daughter is less important than what the effect of gluten ingestion is on her, at least for now.

Hopefully, by the time she is an adult, there will be much more information and better tests available. Or else, dietary response will be the standard of diagnosis by then. In the meantime, I would think that the most important thing is to keep her as healthy as possible, not wait around for someone with a high-priced education and an even higher-priced career to condescend to validate what you already know--that your daughter can't tolerate gluten.

Unfortunately, it seems like only the doctros who have lived with this themselves are able to believe it.

Ah--I see you are going the Enterolab route. I bet that will provide you with some more information!

[jmoody74]

Seems like I may be having to make this decision soon also. My 10 yo son was told right off to start gluten free diet without having any celiac specific blood tests, now I have to wait 7 weeks for him to see a ped GI doctor. He is going so well on the gluten free foods that I do not want to have to make that choice between making him sick or finding out for sure. I am very new with this (doctor just suggested celiac as a possibility 3 weeks ago) so not sure what the outcome will be. Glad to know there are others going through this and having a hard time with the choice. Hang in there!

For what it's worth, I'm convinced that celiac disease (i.e., the damaged villi) can and does occur in gluten-intolerant people who don't even have the celiac genes (there are some on this board!) . It happens when they continue to eat gluten

At this point, I'm not sure it matters what the tests say. Your daughter vomits after eating gluten. Her body is obviously treating it as a poison.

IF that doctor's own daughter had such reactions, you can bet your boots he wouldn't force-feed her gluten. I mean, WHY? But that's like saying, "Gee, we know eating peanuts can cause an anaphylactic reaction in people severely allergic to peanuts, so we want to you to feed your daughter peanuts and not stop UNTIL she has that anaphylactic reaction. Then, and only then will we admit that she shouldn't have peanuts."

I think there are many causes of gluten intolerance, and it's very complicated. Because there is so much unknown territory here, a lot of the testing is kind of like a fishing expedition. The doctors don't exactly know what they are looking for, so they rely on the outdated practice of trying to find villi damage caused directlyand obviously by gluten. Then they can say with confidence, "Yes, this is celiac." But if you don't have damage--then what? What if your body (for whatever reason) simply vomits out the gluten before it even GETS to your intestines? So then, you would have perfect, healthy villi, and they would say, what that it's not celiac? Does that mean they think you should still eat gluten?

I think that what is causing gluten intolerance (celiac genes or "something else") in your daughter is less important than what the effect of gluten ingestion is on her, at least for now.

Hopefully, by the time she is an adult, there will be much more information and better tests available. Or else, dietary response will be the standard of diagnosis by then. In the meantime, I would think that the most important thing is to keep her as healthy as possible, not wait around for someone with a high-priced education and an even higher-priced career to condescend to validate what you already know--that your daughter can't tolerate gluten.

Unfortunately, it seems like only the doctros who have lived with this themselves are able to believe it.

Ah--I see you are going the Enterolab route. I bet that will provide you with some more information!

[Jestgar]

IF that doctor's own daughter had such reactions, you can bet your boots he wouldn't force-feed her gluten. I mean, WHY? But that's like saying, "Gee, we know eating peanuts can cause an anaphylactic reaction in people severely allergic to peanuts, so we want to you to feed your daughter peanuts and not stop UNTIL she has that anaphylactic reaction. Then, and only then will we admit that she shouldn't have peanuts."

Since this was brought up

YEAH!! I mean what the H***!! How barbaric is it to ask someone to do what amounts to poisoning themselves or their child just to prove to the doctor that something bad is going on!!

I cannot believe that reputable physicians still assume they have the right to expect someone to do this and hope that everyone can get up the nerve to tell off anyone who suggests it!!

OK, climbing off high horse now.

That's been building up ever since I read vampella's first post and the anguish she was clearly in for being forced into that position. Thanks for listening.

[Gentleheart]

I have the highest respect and admiration for what the medical profession can do. There are some scoundrels amongst them, like in every profession. But most doctors I know are very smart, way too busy and really do care. So I'm asking this in all honesty.

Is it common practice (except on "House") to purposely do tissue damage at a drastic level (like destroying substantial amounts or all villi in the small intestine) in order to have an 'official diagnosis' to satisfy insurance companies, standard of care rules, doubting health professionals, or skeptical friends and family members. And in this case we are NOT talking about wanting a precise diagnosis because of the need to prescribe potentially dangerous medications. That might be justified. But the treatment in this odd disease is mere dietary compliance.

I'm really confused. "First Do No Harm." If it is difficult for me to force myself to purposely harm my body or the body of a loved one, what must it further mean for a medical professional who has actually taken that oath.

Somebody needs to reevaluate the protocol on this and change the entire standard of care here. It sure sounds foolish to me the way it is.

One more observation.....I was happy to do that survey from another thread to help the govt determine labeling procedures. One of the questions required me to state whether I was actually biopsy-diagnosed or just following the diet. I realize why they included it, but isn't it a bit demeaning? If I don't have the golden biopsy diagnosis, I don't REALLY have this and don't count 'quite' as much.

[Fiddle-Faddle]

I have the highest respect and admiration for what the medical profession can do. There are some scoundrels amongst them, like in every profession. But most doctors I know are very smart, way too busy and really do care. So I'm asking this in all honesty.

Is it common practice (except on "House") to purposely do tissue damage at a drastic level (like destroying substantial amounts or all villi in the small intestine) in order to have an 'official diagnosis' to satisfy insurance companies, standard of care rules, doubting health professionals, or skeptical friends and family members. And in this case we are NOT talking about wanting a precise diagnosis because of the need to prescribe potentially dangerous medications. That might be justified. But the treatment in this odd disease is mere dietary compliance.

I'm really confused. "First Do No Harm." If it is difficult for me to force myself to purposely harm my body or the body of a loved one, what must it further mean for a medical professional who has actually taken that oath.

Somebody needs to reevaluate the protocol on this and change the entire standard of care here. It sure sounds foolish to me the way it is.

You put this so beautifully, I'm going to quote you at my next doctor's appointment!

[rez]

Our doctor told us that the reason they don't like to officially diagnose patients until they know absolutely 100% is because then the patient has a pre-existing condition on their medical chart and it may cause problems getting insurance in the future. This is what he told us. I'm not sure how accuate it is, but he said it's a very serious disease and it's life long and they want to be 100%. I think most physicians would be okay with charting "gluten intolerant". I think this is such a different issue when you're referring to a child vs. and adult. It's so much harder, in my opinion, when you have to make the decision for your child. The hard thing is there's so much gray area in this disease. All the symptoms and reactions vary from person to person. There's no such thing as a "typical celiac". The ongoing debate. :)

[Gentleheart]

Like I said. If insurance coverage issues have become so skewed as to dictate a person purposely injure their intestines in order to possibly NOT get a certain unpopular diagnosis, we are in serious trouble. If the doctor is right and that is honestly the REAL reason for all these intestine-shredding gluten challenges and invasive testings, it's a lousy one.

[Crayons574]

I'm crying and shaking. I called her Dr today. He called back and we had a talk. he's going to find out about gene testing for me. If they will let us, we are going to do it.

He said we have 2 other options.

ONE- since we saw a GI here who was terrible, he can and would refer us to Toronto. That's not an option for us at this time.

TWO- give her gluten and do the tTg again, if we see a rise then we know and she can be Dx'ed right there.

My mother told me I was abusing her for even thinking about option number 2. I agree but it seems like my only choice at this point.

Right now she's having a PB sandwhich on wonder bread(whole wheat).

Wish me luck.

Vampella~

What were the results of the Enterolab tests?

[Maiko]

I'm so sorry you were put in that position, it's a horrible feeling. My 3rd child was being tested (DNA cheek swab) and had the endo w/biopsy but while we were waiting for results I was told to continue feeding him gluten.

I'm very new to this lifestyle and this is my first post, I'm honestly thrilled to find such a community of experience. Thank you everyone for sharing your knowledge.

Maiko

[JennyC]

Somebody needs to reevaluate the protocol on this and change the entire standard of care here. It sure sounds foolish to me the way it is.

Yes, it is ridiculous. It is slowly beginning to change. Unfortunately, it was stated in an article in the New England Journal of Medicine that after new research comes to light it takes an average of 17 years for doctors to adapt new practices with their patients!

[cadesmom]

forget that above post, I can't do it, I just can't.

I am going to wait for the Dr. to get us gene testing because I'm not strong enough to challenge it.

I can not do it. sorry about the waisted post!!

Run a long, now!!

i am confused did you get a neg blood test for her? my sons justcame back neg and my gi doc who is wonderful said she wants to do gene testing but i removed all gluten so i now have to add small amouts back daily for one month which is the scariest thought ever but i am going to do it because since 6 days ago when i removed gluten my son sleeps no more up all night with him screaming,i am just as scared as you to do this to him.now that i see the how peacefull is is when he sleeps i feellike i will be the one hurting him,and why does your gi doc need to find out about testing mine said that was her next step ,good luck to us both let us know ,