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What To Do Next For My Son?

jnclelland

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jnclelland Contributor
jnclelland
Posted

First, a brief history of me: I stopped eating wheat and dairy about a year ago, and went completely gluten-free in October. This was at the suggestion of my acupuncturist, and by the time it occurred to me to pursue a "real" diagnosis, I had been off gluten too long to get a positive test. I hemmed and hawed about doing Enterolab for awhile, and finally did it after 8 months wheat-free (and 4 completely gluten-free), and it also came back negative. However, a few of my numbers were fairly high in the negative range, and I did have a positive gene test, so I may have just waited too long to do the test.

As for symptoms, I never had typical celiac GI symptoms, but I had terrible rashes on my hands and face (not DH as far as I can tell, though) for over a decade that have completely gone away, my anxiety level has decreased dramatically, and I just feel better in a thousand little ways and have no desire to ever eat gluten again.

Yay for me, right? Well, since I don't have anything like a real diagnosis, my hubby clearly thinks I'm overdramatizing how much better I feel. Don't get me wrong; he has been perfectly supportive of my eating restrictions, but I think he kind of thinks I'm making it up.

Now to the current problem: I've been debating with myself for awhile as to whether or not I should get my son tested. Like me, he doesn't have "typical" celiac disease symptoms, but he does have a hard time gaining weight even though he eats like a horse, and he has MAJOR anxiety issues. This is the real red flag for me, simply because MY anxiety issues have improved so much off gluten.

So I finally called his ped and asked for the test. After consulting with the GI specialists, she agreed to order ONLY the ttG test, since according to the specialists, that's the only one that's "evidence-based." And it came back negative - which I expected, because my hunch is that he's gluten-intolerant, but NOT celiac.

So now what do I do? I'm really annoyed that they wouldn't run the full panel, but welcome to managed care. I could have him tested by Enterolab, but my hubby isn't going to believe anything less than a diagnosis from our doctor, so what's the point? I can't possibly put a 6-year-old on a gluten-free diet without hubby's support. And I don't even really WANT to put him on the diet, because that's a very tough thing to ask of a kid who doesn't have any symptoms that bother him. But his anxiety level is off the charts, and my heart aches for him and all the social and emotional difficulties is causes him, when I can't help but wonder if the diet could really help him. I do NOT want to put him on any kind of medication, that's for sure! But I'm all out of ideas for what to do next. :(

Jeanne

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CarlaB Enthusiast
CarlaB
Posted

Were you ever tested for an allergy to wheat rather than a gluten intolerance? I was off wheat for three years and off gluten for three months and got a 60 Iga and a 44 Ttg from Enterolab. I'm not suggesting you don't have it since you're feeling better, but maybe you're allergic? I know that my non-celiac. non-gluten intolerant husband feels much better off gluten, so I'm also thinking that maybe gluten is just bad for all of us ... some more than others.

People around here have some great ideas, I'm sure you'll "hear" lots of them.

Oh, my blood tests and endoscopy were both negative.

jnclelland Contributor
jnclelland
Posted
  • Author
Were you ever tested for an allergy to wheat rather than a gluten intolerance? I was off wheat for three years and off gluten for three months and got a 60 Iga and a 44 Ttg from Enterolab. I'm not suggesting you don't have it since you're feeling better, but maybe you're allergic? I know that my non-celiac. non-gluten intolerant husband feels much better off gluten, so I'm also thinking that maybe gluten is just bad for all of us ... some more than others.

People around here have some great ideas, I'm sure you'll "hear" lots of them.

Oh, my blood tests and endoscopy were both negative.

Yes, I had a wheat allergy test and it was negative too. I'm inclined to agree that gluten probably isn't good for anyone! But after reading Dangerous Grains, I recognized soooo many signs of gluten intolerance in my extended family; that, combined with the fact that I had a positive genetic test, makes me pretty suspicious. Not that it matters for me - I'm just glad I feel better!

After I posted that note, I talked to my son's pediatrician. I told her about my experience and my concerns about his anxiety, and she was actually supportive of trying him on a gluten-free diet for a few weeks, if only to rule that out as a cause of his anxiety. If it helps, great, if not, then we need to look for other causes. Perfectly reasonable, actually. Now I just hope that her endorsement will be enough to convince my hubby that we should try it! (But not till after DS's birthday later this month; it would just be plain mean to deprive him of birthday cake! :) )

Jeanne

TCA Contributor
TCA
Posted

I was too worrieda bout being able to five my son the foods he loves, but they're all out there in gluten-free form. If you want to gluten-free before his b-day, just make a gluten-free cake. That's what we do and everyone eats them without compliant. My fav is the Cause You're Special Yellow Cake Mix. YUM! Chebe Pizza crusts are delish. the list goes on and on..... I have a list of gluten-free kid foods my son eats if you would like it. Just PM me your e-mail

good luck with everything.

skipper30 Enthusiast
skipper30
Posted

I am SO glad that you posted!!

I have 6 year old who shows no GI symptoms either..but he also has major anxiety issues. He has "transient tics" which aren't actually Tourette's but they mimic it. The tics have waxed and wained over the past 2 years and we are seeing them again. He worries about all kinds of things too.

This past week, I had an "aha" moment and wondered if maybe it could be what gluten does to him. I know that this will be no help to you, but you have been a huge reasurance to me. I am also thinking about trying him gluten free for a few weeks and see what kind of shcne (if any) we might see in him.

Good luck with everything...I hope that you will find some answers for you little one!!

jnclelland Contributor
jnclelland
Posted
  • Author
I was too worrieda bout being able to five my son the foods he loves, but they're all out there in gluten-free form. If you want to gluten-free before his b-day, just make a gluten-free cake. That's what we do and everyone eats them without compliant. My fav is the Cause You're Special Yellow Cake Mix. YUM! Chebe Pizza crusts are delish. the list goes on and on..... I have a list of gluten-free kid foods my son eats if you would like it. Just PM me your e-mail

good luck with everything.

I'm definitely going to have to look into some of this stuff! I haven't been eating much in the way of sweets or "kid food" myself, so I'll have a whole new learning curve to climb. :)

I do think we'll wait till after his birthday to try it, though; it's only a week away, and we have the added challenge that his grandmother will be in town for awhile. She always wants to bake lots of treats with the kids, and there's no way she's going to change all that on no notice just for a diet trial. I'm going to have enough of a challenge convincing my hubby that it's worth trying; I don't want to spend the energy trying to convince my mom too!

Jeanne

I am SO glad that you posted!!

I have 6 year old who shows no GI symptoms either..but he also has major anxiety issues. He has "transient tics" which aren't actually Tourette's but they mimic it. The tics have waxed and wained over the past 2 years and we are seeing them again. He worries about all kinds of things too.

This past week, I had an "aha" moment and wondered if maybe it could be what gluten does to him. I know that this will be no help to you, but you have been a huge reasurance to me. I am also thinking about trying him gluten free for a few weeks and see what kind of shcne (if any) we might see in him.

Good luck with everything...I hope that you will find some answers for you little one!!

Well, hey - I think the "me too" factor is one of the most valuable aspects of this board! :)

I do wonder how I'm going to get DS to "buy in" to trying this diet for a few weeks. All I really have is, "we're going to see if this helps you feel less worried about stuff," and I can't imagine that that's sufficient motivation to get him to turn down snacks at summer day camp and whatnot. Any suggestions for selling this diet to a 6yo with no GI symptoms? (Hmmm, maybe I should start a separate thread about that...)

Jeanne

skipper30 Enthusiast
skipper30
Posted

I tried talking to our 6 year old about making diet changes like his younger brother to see "if we all don't feel better"...and it went over like a lead balloon!! He really likes a lot of Cooper's foods, but Riley LOVES his bread...all the time, hot dog buns for a snack etc...So I am not sure how we are going to get this done on our end. I know there is a way...I just have to figure that one out!! <_<

I agree with the grandmother thing...they like to do what they like to do and it may be easier just to wait till her visit is over and then give it a try. Hopefully you will see enough of a change that the others will support the diet change.

Keep me posted...especially if you happen upon any great ideas!

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Ursa Major Collaborator
Ursa Major
Posted

You know, Jeanne, I am a grandmother. My three oldest grandchildren have a ton of intolerances (and not all the same, either) and when I have them here (and I just had them for a whole week), or visit, I do my UTMOST to keep them safe and well. So, why do you think your mother wouldn't do the same if you explain things to her? You'll have to do it eventually anyway. You could buy all the ingredients for baking great gluten-free cookies and cakes! Maybe even buy a couple of gluten-free cookbooks, one for her and one for you. So that she knows what to cook and bake for you and your son when you visit her.

jnclelland Contributor
jnclelland
Posted
  • Author
You know, Jeanne, I am a grandmother. My three oldest grandchildren have a ton of intolerances (and not all the same, either) and when I have them here (and I just had them for a whole week), or visit, I do my UTMOST to keep them safe and well. So, why do you think your mother wouldn't do the same if you explain things to her? You'll have to do it eventually anyway. You could buy all the ingredients for baking great gluten-free cookies and cakes! Maybe even buy a couple of gluten-free cookbooks, one for her and one for you. So that she knows what to cook and bake for you and your son when you visit her.

I think that once we try the diet, IF if becomes clear that it helps him, she'll be supportive. But she has her own set of issues around food, and I think she doesn't want to entertain the possibility that some of HER health issues could be gluten-related, so she'd prefer to stay in denial about the whole thing.

That said, I'm going to give it a try anyway. This morning DS was talking about something he was worried about, and I took the opportunity to say, "You know how you worry about a lot of things? When I found out I was allergic to wheat (we'll deal with the difference between wheat and gluten later!), I discovered that when I didn't eat it, I worried a lot less. So I was thinking maybe we should try having you not eat wheat and see if it helps YOU worry less." Much to my surprise, he thought that was a great idea, because he would really LIKE to be less worried! So we started talking about some of the foods that have wheat in them, and how I could buy or make replacements for most of them. He didn't want to risk messing up his birthday cake, but he thinks it would be a GREAT idea to try this for a week or so (and of course, we'll re-evaluate after a week, because his doc recommended a 4-6 week trial) right after his birthday! I'm psyched; I had no idea it would be so easy to sell him on this idea!

Next up: Grandma. :) She arrived in town shortly after this conversation, and DS (not me!) almost immediately told her that he was going to try not eating wheat after his birthday to help him worry less. I quickly explained that his doctor had suggested this, and that he seems to think it's a good idea, so we were going to try it. And she pretty much just said, "Okay," so maybe it will actually work! And I think I have my hubby on board too now, so hopefully we'll give it a go starting in about a week. (Bonus: ALL food in the house will be gluten-free that week, so my mom will get to try a gluten-free diet for a week whether she wants to or not, and maybe she'll feel better too! Or maybe I'm just dreaming ...)

Anyway, I'll let everyone know how it goes!

Jeanne

jerseyangel Proficient
jerseyangel
Posted

Jeanne--That sounds great! You have a very sensible son there :) I can't wait to hear how everyone does on the gluten-free trial.

eKatherine Apprentice
eKatherine
Posted

Good luck. Looks like a good plan.

By the way, it's not impossible to have a gluten-free birthday cake.

jnclelland Contributor
jnclelland
Posted
  • Author
Good luck. Looks like a good plan.

By the way, it's not impossible to have a gluten-free birthday cake.

I know, and I told him I could make him a great gluten-free cake, but he didn't want to risk it. (Can't say I blame him - we all know how important birthday cake is when you're 6!) I don't want to push him and turn him off to the idea, and I figure there's no harm in waiting another week. Plus, he wants to have some time to do all the yummy baking that Grandma always does when she comes to town, so I figure they can do that for a week and maybe get it out of their systems!

Jeanne

ravenwoodglass Mentor
ravenwoodglass
Posted
I know, and I told him I could make him a great gluten-free cake, but he didn't want to risk it. (Can't say I blame him - we all know how important birthday cake is when you're 6!) I don't want to push him and turn him off to the idea, and I figure there's no harm in waiting another week. Plus, he wants to have some time to do all the yummy baking that Grandma always does when she comes to town, so I figure they can do that for a week and maybe get it out of their systems!

Jeanne

Why not get a gluten-free cake mix and have them make that in addition to the gluten cake. Or make a gluten-free cake when they are out. Most folks can't tell the difference with cakes if you don't tell them first. Then after everyone enjoys both cakes let them know that one of them was gluten free. :D

jnclelland Contributor
jnclelland
Posted
  • Author
Why not get a gluten-free cake mix and have them make that in addition to the gluten cake. Or make a gluten-free cake when they are out. Most folks can't tell the difference with cakes if you don't tell them first. Then after everyone enjoys both cakes let them know that one of them was gluten free. :D

That's a good idea - so, what are everyone's favorite brands of cake mix/frosting? :)

Jeanne

TCA Contributor
TCA
Posted

The BEST i've found is Cause You're Special Yellow Cake Mix. I buy it at glutenfreegourmet.com It is soooo good. I really don't think anyone would know the difference. In the big scheme of things, waiting a week wouldn't be the end of the world. It might give you a week to get things in order to make sure you have great gluten-free snacks for him. I'm so glad it seems to be working out for you!

jerseyangel Proficient
jerseyangel
Posted

Another good one--The Gluten Free Pantry Cake and Cookie Mix--delicious with homemade chocolate frosting! I can post a recipe if you like :)

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