Advice On 10 Year Old Glutening Herself

[tazallie]

Hi I just wondered if anyone had any advice for me as I am at my wits end.

In April after a long three/four years of illness we embarked on a gluten-free diet, my GP refered us to a specialist who confirmed she was Gluten intollerant based on her history and the elimination diet but couldnt confirm if it was Coeliacs as the blood test was negative but one test had not been done (The one that checks for anitbodies that can give a false negative???) anyway he has told us to start a challenge in January and he will redo the blood tests and a biopsy in March.

However he explained that if it is intollerance my dd may or may not out grow it...well by DD is clinging to this and keeps eating Gluten foods to see if she is better yet.

Depending on what she has she will either get a severe stomach ache or not, but she always ends up hyper and then crashing with severe tiredness and general feeling unwell. No matter what I say to her she still does it. I have tried to explain the consequences but she is convinced she is going to outgrow it TOMMORROW!

Has anyone had this? what did you do?

I get so frustrated as she admits she sees how much better she is, and that she always feels ill when she eats gluten but she still does it again. I cant afford for us to have a completly Gluten Free house as the foods for her cost far to much, so there is often wheat bread at least in the house. If i have to I will have to go back to a fully gluten-free house as I did when she was first diagnosed but that nearly crippled my meagre finances and I am dreading the extra cost if I do.

I finally have a little girl who looks well, can concentrate and can go more than two weeks before she gets a bug and ends up off school again (and her pot belly is gone!!). And I want to keep her that way so any adivce would be appreciated.

[Ursa Major]

Apparently, you have a pretty ignorant doctor. Whether it is actually celiac disease or gluten intolerance is irrelevant, you simply DO NOT EVER outgrow it! If she is gluten intolerant now, she will always be gluten intolerant. So, she needs to give up on that idea and accept the fact that she has to be on the gluten-free diet for life. No more testing if she has outgrown her intolerance, that is entirely useless, as that won't happen.

If your daughter's blood test was negative, what would your doctor want to put her back on a gluten diet for to redo the tests in January? The chances of her tests to be negative will be much higher this time around, even after a gluten challenge for three months. Not to mention that she will get VERY ill again, and it may cause irreparable damage to make her eat gluten again for three months.

Three months are usually not even enough to destroy the villi again to such an extent, that either the blood test or the biopsy would be positive. That's right, your doctor is telling you to purposely destroy your daughter's villi, causing malnutrition and severe illness in the process. He is ordering you to torture your daughter and making her ill, just to confirm something you already know, namely, that the child is intolerant to gluten. Please don't listen!

[Fiddle-Faddle]

I agree with everything Ursa said, and want to add that your daughter is ADDICTED to gluten. It's like telling a crack addict that they can't have it now, but that there's a chance that they could outgrow the problem and be able to have it again, isn't it? Of course she will keep checking! Gluten does that to us--it affects the opiate receptors in our brains and we want more and more and more....

The cravings do go away COMPLETELY if you are 1) totally gluten-free long enough (for me it was only two weeks, but it was a very, very difficult 2 weeks) and 2) have a truly good-tasting gluten-free substitute for whatever it is you are craving.

Make gluten-free cookies, cakes, cupcakes, pizza, bread, whatever your daughter is craving. There are some terrific recipes (check out the gluten-free archives at www.foodphilosopher.com) that taste just as good or even better than the gluteny originals, I kid you not. There are also lot of good recipes on this board.

I was stunned to find out htat I could eat 3-4 gluten-free chocolate chip cookies and feel satisfied. Before, I could always eat the entire batch at one sitting and still want more (anybody else ever feel like this???).

Prove to her that she can eat everything she used to eat, just made with different flours. And don't bother with most of the pre-made stuff, it tastes like styrofoam compared to homemade.

[EBsMom]

I was stunned to find out htat I could eat 3-4 gluten-free chocolate chip cookies and feel satisfied. Before, I could always eat the entire batch at one sitting and still want more (anybody else ever feel like this???).

Yes, definitely! I eat way less sugar in general, now that I'm gluten-free. So do my kids. That really shocked me. My ds was a junk food junkie - loved potato chips, donuts, cookies - and would eat to excess if I didn't watch him. He still likes that stuff, but he's satisfied with a couple of gluten-free cookies, or a handful of chips. He's actually lost a few lbs since going gluten-free. His symptoms were all neurological, BTW, so I suspect that there was some sort of addictive or opiate-type reaction going on. He's so much better, in so many ways, off of gluten.

To the OP....would it be possible for you to take your house completely gluten-free for a while (or forever?) Then there's not the temptation right in front of your dd. If not, then I second what someone else said....make sure you have good replacements available for her. I do a lot of cooking from scratch now, so that the gluten-free stuff is *better* than the gluten-filled stuff that my kids used to eat. That has helped a lot. Are you gluten-free also? I went gluten-free with my dd (she was the first to go gluten-free) to support her....and guess what? I ended up finding out that I have a gluten intolerance as well. And then came my ds. It's ended up being a family affair here....and that's made it easier for all of us. Good luck to you!

Rho

[Nancym]

Going gluten free doesn't have to be expensive. You can simply opt to not replace items with expensive gluten free ones. Simply eat meat, veggies, eggs, fruits, nuts and you'll not only be much healthier but you'll be avoiding gluten and sugar and refined carbohydrates that we really don't need.

[tazallie]

Thanks for your responses,

I hadn't really thought about gluten being addictive but that actually makes a lot of sense, so thanks for pointing it out. As to alternatives, thats what has me stumped I have found alternatives that she loves for most things. I bake great cakes, biscuits and she loves the bread I make her. I have found alternatives and modified receipes for everything she loved before gluten-free and some of the receipes as better now than they were before.

As to the cost, it is a lot more expensive going gluten-free, the things to make her bread cost me

[Fiddle-Faddle]

Keep in mind that it is possible that she may very well HAVE celiac, but if the villi sample he takes happens to be undamaged, he will say that she doesn't have celiac. If he only takes 6 1/2" samples, and she has 22 feet of intestine, with only partial villi damage, he only has 1 6 in 1200 chance of getting an affected sample. And villi damage is often NOT visible to the naked eye.

Pretty poor odds, if you ask me.

But I totally understand your reasons for wanting a firm diagnosis.

If you can get to an Asian grocery store, they generally sell fine white rice flour, tapioca starch, and potato starch for 69 cents (American) per pound. (Groceries and health food stores here sell it for $4 per pound. )

[Ridgewalker]

He wants the biopsy because in the UK my daughter will be entitled to free prescriptions of gluten-free food (bread, pasta, flour etc) if she is coeliac but the only way she can have this is if she is diagnosed by biopsy. This will benefit her in the long run throughout her life. He also wants to know and pass on to the medical community her diagnosis...which is vitally important for us all to do to aid the next generation of GI/coeliacs

.....

And lets face it where would we be today if the all the people before us had refused challenges and biopsies...we wouldnt have a fraction of the answers we have (And we still only have a fraction of the answers that have yet to be discoverd) but to challenge or not is a personal decision that should be respected either way, to challenge isnt a decison for everyone but it is a valid one both medically, personally and ethically as a mother and I am no more torturing my daughter than if I gave her chemotherapy for cancer.

It's always a tough situation, and tough decisions have to be made. I think you made some very good points.

-Sarah

[mommyagain]

Do you have any pictures of your daughter from when she was sick? Especially ones that REALLY show her pot belly? And any other physical signs of her illness? In the pre-teen years, a lot of girls are really starting to worry about their looks. I'm not saying that you should encourage her to be totally focused on looks, but if you show her some pics of when she was sick, that may cause her to want to stay off gluten! Maybe you could tape a few pictures (before and after?) on whatever mirror she uses in the morning. That way, she can see for herself how she looked when she was sick, and how much better she looks healthy.

Also, you can drop subtle hints about how much better her clothes fit/look now that she's healthy.

[tazallie]

Yeah I do have some photo's and in one of them she looked awful, I will try anything at the moment so I'll dig out the photo to remind her of what she looked like on gluten and how much better she looks now.

Thanks for all the advice

[prinsessa]

My daughter has the same problem with glutening herself. Our house is 95% gluten free (DH still buys regular bread for lunch) but she gets things from her friends. Last time she had to miss a day of school because she was so sick from eating a piece of cake. When she was sick she talked about how that piece of cake wasn't worth it and she would never do it again. Then two days ago SIL was making crepes and DD wanted some. I told her that I would make gluten free crepes some other day. She told me that she didn't care if she got sick....she wanted them right then. I think it is just hard for children (and adults) to accept that they won't be able to eat what everyone else is eating all the time.

[tazallie]

Princessa, I think you are so very very right about them wanting to eat what everyone else eats. I know my daughter is very aware that she eats different foods and I think no matter what great foods I make her its still not going to be what her friends are eating. I know for myself and Im not GI but when we are fully gluten-free (as we are again now) I sit sometimes and want a wheat bread sandwich but I can console myself with the fact that when I go to work in the morning I can have a wheat bread sandwich if I want...our kids cant, it really is so hard for them.

My daughters birthday is in two weeks and I'm throwing her a party with all her school friends, when I discussed the menu with her tonight (Its all gluten-free) she threw a fit and said she didnt want to make her friends eat weird food...it was awful that she feels that way but at least I have some insight into how she really feels about gluten-free food and why she is glutening herself. We had a discussion on the fact that all of the food is things some of her friends have had before at our house and that it is good that her friends get to try her food...that some might even like it better than their own. She got excited that she might have something they want so I'm going to have to make sure I make the best gluten-free party food ever!!! (And the cake she wants is going to be interesting!)

But at least because of it we were able to have a good discussion, and she admited 'again' that she hates how she feels when she glutens (so far we have had the extreme tiredness that is still there, the horrid snappy moods and now she has a rash...)this is the longest lasting glutening effects since she started self glutening, so maybe this one will sink in better, and hopefully if the food goes down well at the party it will all go to making her see the benefits of gluten-free again.

And Princessa I hope you and I and everyone else in this postition can help our kids understand what they are doing to themselves and feel better about their diet.

[mommyagain]

Your daughter's friends MAY be old enough to help! I have seen at least a few posts where someone said their 13yr old's friends won't LET her eat something that has gluten in it.

Also, if your daughter is still thinking that she's going to outgrow this and wants to know as soon as that happens, maybe you could set up a schedule where every couple of months, she can have a cracker. That way, she has some control over what is going on with her body. She probably feels like she is old enough to make her own decisions about food, and now there are these adults telling her "you can't have this, you can't have that..." Probably feels like she is back to being a baby where someone else has all the control.

[Juliebove]

My house is not entirely gluten free either, but I do keep as much of it gluten free as I can. For instance, I do not have any wheat flour in the house.

My daughter's food is kept separately. She has her own little fridge and her own shelves for food. For some things that might possibly get CC, I buy two. One for her fridge, one for ours. She is very good not to get into anything she is allergic to (she has more allergies than just gluten) because she doesn't like to get sick.

In your case, you might have to buy some sort of cabinet with a lock on it and lock up all the gluten. Of course it's possible she could still get it at a friend's house or buy it at the store.

As for the addictive part, this might be true. My daughter and I find it odd that anyone would continually eat that which they are allergic to because we hate feeling sick. Yet my mom also has food allergies and keeps eating what she shouldn't because she says she craves it. I guess we're all different.

[KellyBlakey]

This is my first time ever posting on a forum before. I totally sympathyse with you about the shock and optimism. My daughter was diagnosed with type 1 diabetes at age 4. I was so overwhelmed and panicked. I didn't know how I was going to measure out all of her food and get her to take 7 shots a day plus 7 finger pokes and that was on a good day. But we did get used to it. Then we got the pump which was supposed to help regulate her blood sugars. She seemed to be getting worse. She was classified a brittle diabetic. We were just chasing her numbers and didn't know why she would shoot up so high for no reason eating the exact same thing as she did the day before with no raise in blood sugar. Now she is 6 and two months ago she got the high numbers on her blood tests. I don't even remember what the tests were exactly except her numbers were supposed to be under 5 or 8 I think and they were all over 100. That's when her doctor started talking about Celeiac disease. I thought I had enough with diabetes plus she had no symptoms. Just a somach ache when her blood sugar was low but that is a typical sypmpom of low blood sugar. We went to the G.I. for a consult and boy was she the opposite of your doctor. She was very very strict and frightening. She told me my daughter could never ever ever eat a crouton for the rest of her life. If she ordered a salad at a reastearunt and it had croutons they had to make her a whole new salad. She could never have this or that or the other thing. It was still so hard to believe since she has no symptoms we went ahead and go the biopsy and the specialist reported that she does have celieac disease. I meet with the nurtrition specialist in 3 days from now but I feel like she has diabetes all over again. Most of the Gluten free food is high is carborhydrates and the cost is so difficult. But here is my biggest problem everyone so if someone has ideas I really need the help. The packaged food not only is more expensive but tastes worse than the fresh food. With the packaged food I know that two cookies equals .... amount of carbs. When I make anything from scratch I am having difficulty maintaining her blood sugar due to protion sizes. I made brownines and I cut them into 12 servings just like the box said but didn't work out well. Or cookies make them into 1.5 inch ball = this amount of carbs but very difficult to get outcome to be exactly like the box measures and assumes the portion size to be in relevance to the carb count.

Thank you,

Kelly

Thanks for your responses,

I hadn't really thought about gluten being addictive but that actually makes a lot of sense, so thanks for pointing it out. As to alternatives, thats what has me stumped I have found alternatives that she loves for most things. I bake great cakes, biscuits and she loves the bread I make her. I have found alternatives and modified receipes for everything she loved before gluten-free and some of the receipes as better now than they were before.

As to the cost, it is a lot more expensive going gluten-free, the things to make her bread cost me

[dilettantesteph]

I didn't read through all the replies, as I am in a hurry, but I think I can offer a different perspective. My son was diagnosed by diet alone. The doctor wanted tests, but I didn't understand the importance of testing before going gluten free and messed things up.

My son was 10 too. I figure he should be responsible for his own diet at his age. We decided together to do a gluten challenge to try to get the testing done. I could tell he was reacting immediately. He denied it and kept eating gluten or three days until he was so sick, even he had to admit it. I bought him all his favorite gluten containing foods. It was like a last big blow out for him. At the end of it he was convinced that gluten was the problem. It took a couple of months for him to completely get over it. Now he won't even consider eating gluten. He will go to any extreme necessary to avoid it. I hope that he didn't suffer irreversible damage from that. As far as I know that only comes after many years of being sick. After all I was sick all my life and not diagnosed until 48 and seem to healing. I don't think policing her or having a gluten free household will work. It has to be her decision. There is gluten everywhere. If she wants it she will get it. I agree with the addiction statement. Even the smell used to drive me crazy, and it lasted much more than 2 weeks. More like 7 months.