Do I Really Have To?

[Lunabell]

Do I really have to make my poor child eat things that contain gluten until she can have an endoscopy? She had a positive blood test. She hardly eats stuff with gluten in it anyway...I think it is an instinctive choice on her part. However, when she does have it, poor kid is in soooooo much pain.

Yesterday I went to a cookie exchange. She had some cookies and some pizza. Today she is absolutely miserable. She is lying next to me, curled up in a ball with her tummy hurting, and just looks so sad. I just can't continue to put her in positions where she eats stuff that makes her feel this way simply so we can look inside to confirm the external observations. When she doesn't have gluten, she doesn't hurt. When she does, she hurts. That really is enough for me. It is breaking my heart to see her this way.

[tarnalberry]

No one is forcing this. It's important to remember that. Your doctor may be expecting it, and may want it, but that is not the same as forcing it. You may not be able to get a biospy diagnosis, but that is also not the same as forcing it. You can keep your child gluten free whenever YOU want to, making the decision on when to do so making the best tradeoffs.

Many people here do not have biospy diagnoses.

[SilverSlipper]

When is the biopsy scheduled? Our experience is that they are done fairly quickly (within a week) of a positive diagnosis.

If my child were that miserable, I'd call the doctor doing the biopsy and tell him that I wasn't going to put her in that much pain any longer and I was putting her on a gluten-free diet. My guess is that the doc will either try to move up the biopsy or will at least take that into consideration when reading the results.

[Lunabell]

We don't even have the biopsy scheduled. We have her first GI appt next Friday and will discuss scheduling the biopsy then. The GI nurse told me that she should continue to eat gluten foods until then. I know they aren't forcing me to do this. It's just that everything is so new to me. I think I am going to go start cleaning out my kitchen, so I can start shopping. If they don't like it, then too bad. I don't have a problem going against doctors when I think it is right. I just like to be sure that I am doing the right thing for my daughter when I do it. Today definitely drove that point home. She is finally perking up, but definitely not her crazy, zany, ball of energy self.

[Skylark]

You need a medical diagnosis if you run into problems with field trips, classroom snacks, and later on with college meal plans. See if your doctor is willing to diagnose celiac on the basis of a positive blood test and strong reactions to eating wheat. If he'll write the letter, you're good to go.

[mushroom]

The principal reason to secure a doctor-confirmed biopsy diagnosis for a child is so that the schools are forced to take into account her diagnosis and make specific provision during her education of her need to be gluten free - no using play doh, not eating birthday treats, etc., keeping her safe from gluten. Some doctors will give a positive diagnosis based solely on the blood tests and a positive response to the diet; others require the biopsy confirmation to certify the diagnosis. Without that piece of paper from a doctor you do not have the same hammer to hit the schools over the head with, so to speak. And if she goes to college and lives in a dorm she will need a special meal plan based on that diagnosis.

Apart from that, I think it is really cruel to continue to harm a child when you believe you know how to make her feel better. It is truly a dilemma which this post is probably not going to help you solve. You have to make this decision for yourself and your child. Perhaps you could call the GI's office and ask them to pencil in a date for the endo so that it can be done as soon after her appt. as possible. Unfortunately, if you were to take her off gluten you would decrease the chances of a positive biopsy result.

[CeliacMom2008]

I've seen posts about others who specifically did NOT want an official diagnosis on their record for future insurance purposes. As we move to the scary world of nationalized healthcare, I think there's a good case for not getting the official diagnosis.

As for school, we've never had any problem with the schools we've been at. No one has ever asked for anything official to prove his condition. He does not have any formal plan in place. We just work with his teachers each year and it has worked very smoohtly. In fact, I just had a teacher that he will have NEXT year stop me to ask if he could do this lesson they were doing where they would be using various candies in class. He's a year away from the lesson and she was already worried about him. I know that hasn't been everyone's experience, but we've never had any problems with school officials.

There is also the monetary portion of a biopsy. We have very good insurance and our out of pocket expenses were still very high.

When our son's blood test came back at our first GI appt. the dr. looked at his chart and then said, "So you're here because your son has Celiac." He of course then went on to say he wanted to do the biopsy to determine the extent of the damage. We were totally unfamiliar with Celiac and thougth we were there because there was "a chance" he had Celiac. In retrospect I'm not sure we would've done the biopsy if we'd known more about the disease and the accuracy of the blood tests.

It's a very personal choice. You and your husband need to weigh it all out and decide what you can live with.

[Lunabell]

The principal reason to secure a doctor-confirmed biopsy diagnosis for a child is so that the schools are forced to take into account her diagnosis and make specific provision during her education of her need to be gluten free - no using play doh, not eating birthday treats, etc., keeping her safe from gluten. Some doctors will give a positive diagnosis based solely on the blood tests and a positive response to the diet; others require the biopsy confirmation to certify the diagnosis. Without that piece of paper from a doctor you do not have the same hammer to hit the schools over the head with, so to speak. And if she goes to college and lives in a dorm she will need a special meal plan based on that diagnosis.

Ahhhh yes.....the almighty label. I really should have thought that through. I know how important it is for my oldest to get her services. I think I am going to push the GI for a diagnosis without an endoscopy. Luckily we know her because my oldest is also her patient for other reasons. If it works, great. If not, we will decided what to do then. I don't think I am going to put Laura in positions where she ends up eating a lot of stuff containing gluten, but I am not going to go completely gluten free. Sorta walk a middle line on this one. That way she is still exposed to gluten, but doesn't eat so much that she is miserable. She seems to have a tolerance level at this point, though I know that can change when she goes gluten-free.

I've seen posts about others who specifically did NOT want an official diagnosis on their record for future insurance purposes. As we move to the scary world of nationalized healthcare, I think there's a good case for not getting the official diagnosis.

As for school, we've never had any problem with the schools we've been at. No one has ever asked for anything official to prove his condition. He does not have any formal plan in place. We just work with his teachers each year and it has worked very smoohtly. In fact, I just had a teacher that he will have NEXT year stop me to ask if he could do this lesson they were doing where they would be using various candies in class. He's a year away from the lesson and she was already worried about him. I know that hasn't been everyone's experience, but we've never had any problems with school officials.

There is also the monetary portion of a biopsy. We have very good insurance and our out of pocket expenses were still very high.

When our son's blood test came back at our first GI appt. the dr. looked at his chart and then said, "So you're here because your son has Celiac." He of course then went on to say he wanted to do the biopsy to determine the extent of the damage. We were totally unfamiliar with Celiac and thougth we were there because there was "a chance" he had Celiac. In retrospect I'm not sure we would've done the biopsy if we'd known more about the disease and the accuracy of the blood tests.

It's a very personal choice. You and your husband need to weigh it all out and decide what you can live with.

I don't know that a diagnosis will matter with the current health care laws. At least currently there are no exclusions for pre-existing conditions. If that part gets repealed, then there will be something to worry about. If we do go the biopsy route, I want it done by the end of the year, so I can put off paying the deductible. Not that I can put it off forever, but I don't feel like getting hit with it right after Christmas.

After dealing with special education for the last 7 years, I think I would prefer to have a 504 in place. So I definitely need to think about that if the GI will not give us a diagnosis without an endo. Decisions, decisions...

Poor kid is still tired today.

[SilverSlipper]

Lunabell, I'm so sorry, but I think I'm going to come across as critical and I don't mean it that way. I can tell that you already have a lot on your plate with your oldest child. I, too, have an oldest child with significant problems and I can also sympathize with the thought of squeezing in all you can before the end of the year.

I wanted to clarify something. If your youngest child tests positive for celiac disease, you need to go gluten free, not gluten-lite. There is long term damage from gluten, even if there are no outward visible symptoms.

I agree with getting a 504. It's been great for us and helpful especially for absences due to accidental glutenings (sp?).

All the best and I hope you don't take offense to my concern.

[tarnalberry]

We don't even have the biopsy scheduled. We have her first GI appt next Friday and will discuss scheduling the biopsy then. The GI nurse told me that she should continue to eat gluten foods until then. I know they aren't forcing me to do this. It's just that everything is so new to me. I think I am going to go start cleaning out my kitchen, so I can start shopping. If they don't like it, then too bad. I don't have a problem going against doctors when I think it is right. I just like to be sure that I am doing the right thing for my daughter when I do it. Today definitely drove that point home. She is finally perking up, but definitely not her crazy, zany, ball of energy self.

I certainly didn't mean to sound snarky with my "no one is forcing this". Especially in areas of medicine where we are not yet informed, it's very, VERY easy to have the doctor's "require" a test and for us to go along with the mindset of it being required. Not because we are "forced" directly, but conditioned to go along with their suggestions even against our instincts (which I think of as indirect forcing ).

I don't think anyone can tell you what the right thing to do for your daughter (and family) is, other than you. The others have posted excellent points to consider when weighing the cost/benefit to skipping the biospy and going gluten-free now or waiting and getting that biospy done. It may be worth finding out if the doctor would diagnose without a biopsy given the dietary information that you have now.

You're doing a great job for being so patient, thorough, and inquisitive in order to help your daughter feel her best!

[Lunabell]

Lunabell, I'm so sorry, but I think I'm going to come across as critical and I don't mean it that way. I can tell that you already have a lot on your plate with your oldest child. I, too, have an oldest child with significant problems and I can also sympathize with the thought of squeezing in all you can before the end of the year.

I wanted to clarify something. If your youngest child tests positive for celiac disease, you need to go gluten free, not gluten-lite. There is long term damage from gluten, even if there are no outward visible symptoms.

I agree with getting a 504. It's been great for us and helpful especially for absences due to accidental glutenings (sp?).

All the best and I hope you don't take offense to my concern.

I understand that we need to go gluten free. However, we are still at that crossroads where GI nurse told us to keep her on gluten until she has an endoscopy. Since we are still not 100% sure what we are going to do, I don't want to put her in a position where she will have a false negative on a biopsy, but I don't want her in pain. This grey area pretty much only lasts until Friday, when we see the doc. A lot rests on whether she will give us a diagnosis without the endoscopy.

Besides, it is going to take me the rest of the week to clean out every nook and cranny in this kitchen, plus get a few new things(pots, toaster, etc). While she is pretty much eating gluten free by choice, there is no way that there is no cross contamination going on right now. Like the gluten free waffles that she stuck in the gluten-y toaster...

Thanks for your concern. I wouldn't want parents running around damaging their kids through ignorance either. I just want this week to be over so we can fully move forward. I feel like we are existing in limbo because the endoscopy issue. If I didn't feel that she needs the "label", this would be a lot more clear cut for me.

[SilverSlipper]

Gotcha, I completely mis-read your post. I thought you were saying that if she were diagnosed with celiac disease you would still have her eating gluten. Sorry!

[Lunabell]

I certainly didn't mean to sound snarky with my "no one is forcing this". Especially in areas of medicine where we are not yet informed, it's very, VERY easy to have the doctor's "require" a test and for us to go along with the mindset of it being required. Not because we are "forced" directly, but conditioned to go along with their suggestions even against our instincts (which I think of as indirect forcing ).

I don't think anyone can tell you what the right thing to do for your daughter (and family) is, other than you. The others have posted excellent points to consider when weighing the cost/benefit to skipping the biospy and going gluten-free now or waiting and getting that biospy done. It may be worth finding out if the doctor would diagnose without a biopsy given the dietary information that you have now.

You're doing a great job for being so patient, thorough, and inquisitive in order to help your daughter feel her best!

Thanks and no worries! I took it sarcastically because that is something I would say.

Gotcha, I completely mis-read your post. I thought you were saying that if she were diagnosed with celiac disease you would still have her eating gluten. Sorry!

My husband accuses me of assuming that he can read my mind when I jump ahead of myself. Sometimes I make things far more confusing than they need to be.

[Tay Tay's Momma]

Do I really have to make my poor child eat things that contain gluten until she can have an endoscopy? She had a positive blood test. She hardly eats stuff with gluten in it anyway...I think it is an instinctive choice on her part. However, when she does have it, poor kid is in soooooo much pain.

Yesterday I went to a cookie exchange. She had some cookies and some pizza. Today she is absolutely miserable. She is lying next to me, curled up in a ball with her tummy hurting, and just looks so sad. I just can't continue to put her in positions where she eats stuff that makes her feel this way simply so we can look inside to confirm the external observations. When she doesn't have gluten, she doesn't hurt. When she does, she hurts. That really is enough for me. It is breaking my heart to see her this way.

If you don't let her eat things with gluten in it, the biopsy can be a false negative, then you will have to go through the whole thing all over again. I just went through this last week with my 8 year old. He is still in pain and we had the biopsy and changed his diet. It takes a little while to get their systems straightened out.

[Lunabell]

If you don't let her eat things with gluten in it, the biopsy can be a false negative, then you will have to go through the whole thing all over again. I just went through this last week with my 8 year old. He is still in pain and we had the biopsy and changed his diet. It takes a little while to get their systems straightened out.

True, but I am questioning whether she should go through it the first time. I am willing to listen to the doctor's side of things. But I can safely say that she would not go through it twice if she does have a false negative.