What Would You Do?

[Guhlia]

Ok, I know there's a good chance that my kids won't have Celiac, but I also understand that there's a chance she will. She started preschool a few weeks ago and has been eating gluten there (just at snack time). Everything seemed to be going well with it until today. She tells me that she doesn't eat snacks there, but today she said she did eat the snack. DH said she screamed the whole way home from school that her belly hurt. Then, when she got home she had an accident in her pants. Then, she proceeded to have diarrhea.

My question is how many of these episodes should I allow to happen before I pull her off gluten again. She's been gluten free for most of her life because she kept glutening me every time she ate it either by kissing me or wiping her hands on me. Also, we suspected Celiac very early on. We thought it best to keep her gluten free until school. Anyway, I know she could just have a stomach bug or something, but I can't help but think this is probably Celiac.

I have an Enterolab kit to test her, but she hasn't been on gluten long enough to test. Plus, she refuses the gluten snack most days so I don't know if she's even eating enough to test positive. We can't afford to have her test positive through the doctor because we have private insurance and our rates already sky rocketed when I got pregnant. We can't afford to fork out any more money on insurance. Plus, if its off her medical records it will save her money down the road.

What do you guys think? I'm just looking for others' opinions.

[buffettbride]

Overall, the most important thing is to keep your child healthy--whether you remove gluten on your own or you choose to do so after a doctor's diagnosis.

I think it would be important to get her diagnosed by a doctor and I would worry less about what it would cost so I could have a confirmed diagnosis (because that is important to me). I guess I don't see the connection between it being off the medical records and it saving her money down the road.

If she is Celiac and goes undiagnosed, then it kind of skews the playing field for others who are trying to raise awareness about it and encourage people to be diagnosed.

If a confirmed diagnosis is not important to you, then just take her off gluten that is what keeps her feeling well. However, realize down the road if you want a positive test officially documented for her, she would need to start eating gluten again to confirm. Kind of a scary prospect, IMO.

Just my 2 cents.

[amandadn]

Ok, I know there's a good chance that my kids won't have Celiac, but I also understand that there's a chance she will. She started preschool a few weeks ago and has been eating gluten there (just at snack time). Everything seemed to be going well with it until today. She tells me that she doesn't eat snacks there, but today she said she did eat the snack. DH said she screamed the whole way home from school that her belly hurt. Then, when she got home she had an accident in her pants. Then, she proceeded to have diarrhea.

My question is how many of these episodes should I allow to happen before I pull her off gluten again. She's been gluten free for most of her life because she kept glutening me every time she ate it either by kissing me or wiping her hands on me. Also, we suspected Celiac very early on. We thought it best to keep her gluten free until school. Anyway, I know she could just have a stomach bug or something, but I can't help but think this is probably Celiac.

I have an Enterolab kit to test her, but she hasn't been on gluten long enough to test. Plus, she refuses the gluten snack most days so I don't know if she's even eating enough to test positive. We can't afford to have her test positive through the doctor because we have private insurance and our rates already sky rocketed when I got pregnant. We can't afford to fork out any more money on insurance. Plus, if its off her medical records it will save her money down the road.

What do you guys think? I'm just looking for others' opinions.

I am kind of in the same boat as to get my 9mo old tested or not. I have decided to. We are getting the panel test done along with allergy. I am fully expecting the celiac results to be neg, she has been off gluten free (except bites here and there from the floor) for 3 mo now. But hopefully the allergy test will give more info. If the tests are neg then her doctor puts money that she has celiac, but if the allgery tests come back positive, then we still are not sure about celiac. Sorry if all of this is confusing, we just made decisions today and they are still spinning in my head

[hez]

Is is possible (just thinking out loud here) that she is reacting but not because of celiac? Maybe her body is just not used to gluten. For example, when my mom was a vegie and started eating meat again it caused havoc on her system. However, after eating meat for awhile her body got used to it again. Does that make sense?

I do think you need to keep the door open to it being a bug as well.

Maybe for now you decide not to decide Just keep an eye on her and continue to see if there are correlations between the big d and eating gluten. Then decide to decide!

Hez

[Guhlia]

Is is possible (just thinking out loud here) that she is reacting but not because of celiac? Maybe her body is just not used to gluten. For example, when my mom was a vegie and started eating meat again it caused havoc on her system. However, after eating meat for awhile her body got used to it again. Does that make sense?

I do think you need to keep the door open to it being a bug as well.

Maybe for now you decide not to decide Just keep an eye on her and continue to see if there are correlations between the big d and eating gluten. Then decide to decide!

Hez

Yeah, I had thought about the whole gluten being new to her system thing, but she's had gluten at snack time before without any negative effects. That's why I assumed it was either a bug or a Celiac reaction. I'm definitely going to give it some more time and see what happens. Luckily her teachers are great and very alert to what's going on. I trust they'll work with me in determining whether or not there's a problem.

I definitely don't want it to go on her medical record. We have private insurance and it costs an absolute fortune to insure someone with Celiac Disease. With growing up in a Celiac family I don't expect her to "need" a doctor's diagnosis if she has a positive gene test and a positive dietary response. That's good enough for me. She has seen me really sick after getting glutened and it really scares her so I don't think she'll have a problem with not eating it if that's what it comes to. She really doesn't like anything that has gluten in it anyway because she's so used to eating gluten free foods. That's what she's been raised on.

[kbtoyssni]

I can definitely see not wanting a celiac diagnosis on her records. Not to mention you'd have to pump her full of gluten for months if you want a positive doctor's diagnosis which I don't think you're going to be able to do. Even Enterolab at this point won't be accurate. Unless you go for the gene test. It's not going to give you a 100% diagnosis, but if she does have some of the known genes for celiac, you might feel better about taking her off gluten for good.

[kbtoyssni]

Oh, and I know I've already said this, but it makes me so mad that insurance charges more for celiacs. Hello!!! A diagnosed celiac on a gluten-free diet is going to be a million times healthier and cheaper than an non-diagnosed celiac. Major pet peeve of mine...

[Guest andie]

I concur.

I think you mentioned that she has eaten gluten before with no ill effects. ie when she kisses or touches you after gluten. I vaguely remember hearing something about the human body not designed to eat the genetic wheats now being produced. These are relatively new in the human diet over the past few decades as compared to ancestors eating the wheat that God created. Thereby making them even harder on the body to digest.

Is this her first year at school. Sometimes that anxiety along with being exhausted from a full day will precipitate these feelings. Volunteer in the classroom if possible a day a week. Ask the teacher if she is the only one complaining of these symptoms. What gluten is she getting? Are they homemade goodies from home sent to school by well meaning parents? or prepackaged?

My 4 children come home in various stages of needing repair. My son is the only one that is gluten free. His sister does not have symptoms. The other 2 have a different gene pool. Can she relate to you what she has eaten that day while away from home? Your home and her lunch is gluten free, right? That will narrow down some sources.

It is very important to know, I think. From personal experience my 10 year old went many years without his mother figuring it out. He is now better, but not totally. However, I did not get him tested as the diet is just as good a test!

When she is at home on a weekend and feeling well try some prepackaged gluten and see what happens. if nothing the next weekend give her homemade gluten and see what happens. (get a friend to make a small amount) Each weekend try different things that have gluten. Just in small amounts. See what happens. That way it is in a way a controlled test and you are right there for her. Eliminate other confusing factors. ie feeling well pre gluten, not too tired, not recently around someone with a bug. Might take awhile, but certainly cheaper. If she gets symptoms, then does it matter whether she tested positive. it makes her feel bad and as a mom that's all you need to know!

No positive results on a record either.

Andie

Is is possible (just thinking out loud here) that she is reacting but not because of celiac? Maybe her body is just not used to gluten. For example, when my mom was a vegie and started eating meat again it caused havoc on her system. However, after eating meat for awhile her body got used to it again. Does that make sense?

I do think you need to keep the door open to it being a bug as well.

Maybe for now you decide not to decide Just keep an eye on her and continue to see if there are correlations between the big d and eating gluten. Then decide to decide!

Hez

[Ursa Major]

You said you have suspected she has celiac disease before. If it was my child, I would have the gene test done to see what her genes are. If she has the celiac disease genes or the gluten sensitive genes, and she has those episodes after eating gluten, I'd take her off it permanently.

I don't believe she dislikes gluten foods because she isn't used to them, but because they cause her to feel bad. Screaming all the way home with a tummy ache, and getting diarrhea, plus the embarrassment of soiling her clothes would be good enough for me to make her 100% gluten-free. Why torture a child like that?

Especially the diarrhea and not making it to the bathroom should be a major clue that this kid definitely can't tolerate gluten. I have my doubts that feeding her more gluten will fix anything, but rather make her ill. I don't believe in the stomach bug in this case.

[blueeyedmanda]

Oh, and I know I've already said this, but it makes me so mad that insurance charges more for celiacs. Hello!!! A diagnosed celiac on a gluten-free diet is going to be a million times healthier and cheaper than an non-diagnosed celiac. Major pet peeve of mine...

I know, enough said! We don't have to take meds or anything. I think we take better care of our bodies than most people do.

Angie, you are in a tough boat...I think I would use the diet response.

[jerseyangel]

Hi Angie,

Yea, this is a difficult one. I do understand your reasons for not wanting to persue an "official" diagnosis. Even if you did, that would mean feeding her lots of gluten for a few months--and there would still be no guarantees that the tests would be accurate.

I would consider the possibility of a virus. Kids tend to start getting sick a few weeks after school starts--I remember that well. I would just watch her for the next week or so, and give it time to run it's course.

If after that, she is still having the stomach aches and D (and any changes in behavoir), I would consider doing the gene test and putting her back on the gluten-free diet.

I doubt she is refusing her snacks because she doesn't like them--I'm thinking that Ursa is right and she feels that they are making her sick. Remember, Tori has been there throughout your illness and is more attuned to how foods can affect how a person feels.

[Guhlia]

Hi Angie,

Yea, this is a difficult one. I do understand your reasons for not wanting to persue an "official" diagnosis. Even if you did, that would mean feeding her lots of gluten for a few months--and there would still be no guarantees that the tests would be accurate.

I would consider the possibility of a virus. Kids tend to start getting sick a few weeks after school starts--I remember that well. I would just watch her for the next week or so, and give it time to run it's course.

If after that, she is still having the stomach aches and D (and any changes in behavoir), I would consider doing the gene test and putting her back on the gluten-free diet.

I doubt she is refusing her snacks because she doesn't like them--I'm thinking that Ursa is right and she feels that they are making her sick. Remember, Tori has been there throughout your illness and is more attuned to how foods can affect how a person feels.

Perhaps I should clarify snack time. At her school there is no set snack time. Snacks are brought in by the parents and the children can choose to have a snack as one of their activities. She's not actually turning down snack time, she's just choosing other activities instead. She's never liked eating, especially not if she has to sit still at a table, so skipping snack is not surprising to me. She doesn't eat snacks here at home either, even when offered, especially if its not exactly what she's hungry for at that moment. Its also very hard to get her to try new things, even if they're similar to things she already eats (like cheese flavored cracker instead of regular cracker) and all these gluteny items are new to her.

We also (ugh) have had problems with her complaining of belly aches many times before. She complains that her stomach hurts when she's hungry instead of saying she's hungry. We've tried eliminating soy, dairy, nuts, and obviously gluten and she still occasionally cries that her belly hurts when she gets hungry. She's on a normal diet now and it doesn't happen any more or less than it did when we had eliminated possible problem foods. Eating makes her belly aches go away, so I'm assuming they're hunger related, at least usually.

She hasn't had diarrhea since Wednesday, but she has been wetting her pants daily. Again though, we go through phases where she wets herself every day for a week and then stops. We also thought this was food related, but couldn't trace any patterns whatsoever and we were looking at week long trends trying to track things back as late as a week prior. Nothing.

So, you can see why I'm completely torn... In addition to all of that, everyone always tells me that I "think everyone has Celiac". It really makes me doubt myself. I'm sure there's also a little bit of denial in there too. I really don't want Tori to have Celiac. Not that it matters if she does, she'll adjust just like I did, it would just suck for her to have to deal with it too.

[Guhlia]

Well, so much for the not having D again... Its not actually D, but its definitely not normal...

She's had a really bad cold though, so it could just be from that. She sometimes gets loose stools when she has a cold.

Thanks for everyone's input. Its really helpful to hear others' opinions.

[kbtoyssni]

Is is possible (just thinking out loud here) that she is reacting but not because of celiac? Maybe her body is just not used to gluten. For example, when my mom was a vegie and started eating meat again it caused havoc on her system. However, after eating meat for awhile her body got used to it again. Does that make sense?

I know that veggies often have trouble digesting meat again because the body has stopped producing the enzyme needed to digest meat. The body will start producing the enzyme again when you start eating meat again. But how does this work with gluten? Is there an "enzyme" or something that the body needs to produce to digest gluten?

[CarolAnne]

Hello, pardon me but I'd like to add my 2cents. I work in the medical field, as an insurance specialist...and I advise everyone I talk to with Celiac NOT to get diagnosed if possible. I'm sorry, I understand the need for bringing this disease to the American attention...but the AMA still lists Celiac as a 'rare, incurable, life-threatening' disease...which means once diagnosed you can NEVER risk allowing your insurance to lapse or you may never be able to obtain insurance again. Or you may be forced to add a rider excluding any or all of the illnesses that can be caused by Celiac. And your premiums will certainly go up...something you may not even be aware of if you have group insurance through work.

I've also heard that none of the tests available today can offer a 100% certain diagnosis. The only 100% positive diagnosis is reaction to food. I have Celiac, my kitchen is gluten-free, my friends and family understand the importance of protecting myself and that EVERYTHING I make or create is gluten-free. If anyone brings something containing gluten into my home, they are very careful to keep it contained, they are very conscious of any cross-contamination and when they go home they take any left-overs with them. Whether your child has Celiac or not...I can certainly see no harm in raising your child Gluten-free for the rest of her life with you. It certainly won't cause any harm...and will teach her a far better and more nutritious way to eat for her adult life.

I understand what you mean about seeing Celiac's everywhere...I've been accused of doing the very same thing. In my immediate family of 9 people...I can see at least 5 others who suffer with the disease - 6 of us out of 9 - that's more than 50% of my family!! They choose to ignore the problem, because admitting to it would make their lives so much more difficult. They see what I have to go through. So instead my family suffers with arthritis, heart disease, diabetes and cancer and say that I am the only one with Celiac. And not a single Doctor has even attempted to consider Celiac as an underlying cause. Celiac is still a rare disease in this country because there is no profit in it for the pharmaceutical companies.

[Guest andie]

this sounds exactly like my son. He has no interest in food unless he is starving! I have to practically force feed him.

he has only been gluten free for about 5 months.

i believe his disinterest in food stems from the fact that every time he ate it would make him feel bad and therefore food has no interest to him. That he grew up (he's 10) with the understanding that food was a necessary evil. I have seen improvement with the gluten free, but he is still not free of the symptoms he had before. ie vague abd pains that can't be pinpointed to food, nausea esp. at night. I have tried lactose free and nightshade free, with no difference.

I have however noticed an increase in appetite since being gluten free and his blood work is pending to rechech his iron, B12, and anemia.(These were extremely low)

Has your daugther ever had blood work that was abnormal?

When Andrew has a sustained illness, he is known to be neutropenic. (immune system shuts down)

Extensive testing has revealed nothing, including a neg. celiac blood test.

If you have any thoughts or suggestions or have noticed any observations, I would appreciate putting our heads together to find results.

thanx

andie

Perhaps I should clarify snack time. At her school there is no set snack time. Snacks are brought in by the parents and the children can choose to have a snack as one of their activities. She's not actually turning down snack time, she's just choosing other activities instead. She's never liked eating, especially not if she has to sit still at a table, so skipping snack is not surprising to me. She doesn't eat snacks here at home either, even when offered, especially if its not exactly what she's hungry for at that moment. Its also very hard to get her to try new things, even if they're similar to things she already eats (like cheese flavored cracker instead of regular cracker) and all these gluteny items are new to her.

We also (ugh) have had problems with her complaining of belly aches many times before. She complains that her stomach hurts when she's hungry instead of saying she's hungry. We've tried eliminating soy, dairy, nuts, and obviously gluten and she still occasionally cries that her belly hurts when she gets hungry. She's on a normal diet now and it doesn't happen any more or less than it did when we had eliminated possible problem foods. Eating makes her belly aches go away, so I'm assuming they're hunger related, at least usually.

She hasn't had diarrhea since Wednesday, but she has been wetting her pants daily. Again though, we go through phases where she wets herself every day for a week and then stops. We also thought this was food related, but couldn't trace any patterns whatsoever and we were looking at week long trends trying to track things back as late as a week prior. Nothing.

So, you can see why I'm completely torn... In addition to all of that, everyone always tells me that I "think everyone has Celiac". It really makes me doubt myself. I'm sure there's also a little bit of denial in there too. I really don't want Tori to have Celiac. Not that it matters if she does, she'll adjust just like I did, it would just suck for her to have to deal with it too.