3 week gf trial for son

[beckyhiker]

Hi all! My 7 year old son just had a positive b.t. only for anti-gliadin ab and nothing else in his huge panel of blood and stool tests. I have been dxd w/ celiac for 4 years and my dad (son's grandad) has been dx'd for about 30 years, so it runs in the family. The pediatrician said that my son, Max, should do a 3 week trial of the gf diet to see what happens and then get back to him. In the meantime I should also make an appt with a ped. gastro.

So, I have 2 problems. One, I know the gf diet since I live it myself, but somehow it seems hard for me to think of things for my son to eat. Just like most other kids, he is picky. He was fine with doing the gf diet, not 1 complaint, but he likes next to nothing (except cookies and Glutino pretzels). One of his "symptoms" is the he is incredibley thin. Not eating now that he is gf isn't helping with that! The worst so far is school lunch. He's only gone through 2 so far, but has eaten only 1 bite of each.

The second "problem" that I see is that if the gastro should agree that he may have cd and he want's to do a biopsy, if Max is still doing the gf trial then I'll have to put him back on gluten foods for the endoscopy to show anything. What have other people done about this? Or do you either pick, a) not doing a gf trial and going straight for the biopsy (and I haven't made the gastro appt yet, be doing that today) or b) just doing the gf trial and if it works, skipping the endoscopy?

I'd really appreciate any words of wisdom on either of these matters! Sorry to come here to vent and sorry if this is in the wrong topic!! Thanks!

[cardine45]

I would highly recommend getting the endoscopy before changing his diet. Once you change his diet, there really isn't much going back without doing a gluten-challenge. I don't know if he displays a lot of symptoms, but he could wind up really hating food if he has to try that. You can also change his diet and try the gf trial immediately after he has the endoscopy, even without the results back yet. At least it will be done.
On the topic of having symptoms, I would think that if he has a lot of gastro problems, he may not be eating because he knows he gets sick. I was always incredibly thin, and I had to struggle with whether I wanted to eat and get sick or not eat and pass out. I can imagine it is hard for a child to convey why they aren't eating and really understand the logic behind it in the first place.
Good luck, and sorry if this is a jumbled mess. I was in a hurry. I'm sure others will chime in with even more/better suggestions.

[Home-Based-Mom]

I second the notion of getting the biopsy before changing the diet.

Also many gluten intolerant kids are picky because they have made the connection between food and discomfort. Once that connection no longer exists, they begin to eat more.

I'm sure Colleen (cruelshoes) will be along with helpful hints for what her son likes to eat.
_________________
Sandi ~ learning to live in a world obsessed and infested with wheat.
"If it wasn't food 100 years ago, it isn't food now." Mike Huckabee
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[cruelshoes]

[beckyhiker]

Hi everyone, and thank you for the replies. I'm sorry that I didn't get back earlier.

Well, I couldn't get an appointment with the recommended gastro before the end of July, which seems a really long time to wait to me! I'm going to see if there isn't someone else that my son's pediatrician can't recommend.

My son has been gf for 1 week today. Although Iagree with all of you that doing the endoscopy first would be preferable (and I would definately do this if it were me) I decided to go this way, because a) I'd already told his school about it and sent them a bunch of info (wimpy, I know not just to tell them forget it), but also because if we can't get into a gastro for forever I want to explore the celiac/gluten intolerant possibility before he goes to see a Developmental/Behavioral doc in June. His teacher is convinced that he has sensory processing disorder, which may be the case, but I wanted to rule out any physical reasons for his "behavioral" problems before just assuming it was something else. His symptoms are fatigue, very low muscle tone (especially upper body), constipation alternating with loose stools, headaches, being very thin (I think he was 1st percentile for his age), and not wanting to participate in most physical activities. Additionally, his teacher complains that he has trouble sitting still, especially on the floor, and that he takes offense too easily from imagined slights from his friends. There are other odd things he does too, such as he will only eat from one particular plate at home. His pediatrician says that he doesn't seem like other kids he's seen with Asperberger's but I guess that's what the Developmental/Behavioral doc is for. I know that these symptoms are not necessarily diagnostic for cd, but when the only blood test of the many that were drawn to come back positive was anti-gliaden I decided that it was a possibility.

Anyway, with the lunch food - I have been trying to make him his usual types of lunches just with gf breads, etc., but he doesn't like them very much (I've used store bought and home- made). I like the idea of cutting deli meat and cheese with cookie cutters; I will have to get some. I tried an Allergaroo (sp?) pasta in his thermos, but he didn't think that was so great either. Rice cakes and cheese seemed to work out ok last Friday. I've had no feedback from his school, so I only know what he tells me about how he eats his lunch because the leftovers don't come back with him. He doesn't really seem any hungrier that he did before trying the diet. He's always been a grazer as far as eating goes.

Ok, thanks again for being so nice as to respond to my original post! have a good day!

[mrsppmrxky]

For a picky eater, maybe you could entice his palate with using the Japanese style of lunches (bento)
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[Kathie]

Blue Diamond makes GF nut crackers in about 6 flavors if they don't contain anything else he may be allergic to. The cheese flavor is very good and kids like them. We've also had the Ranch and my favorite is the Smokehouse but that may be a more adult taste. Glutino also makes a good cracker that's kind of like a Ritz, if you're looking for something to use with the meat and cheese to make it more like a lunchable.
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CD by Biopsy 3/25/88

[jeant]

How much does he participate in his lunch planning and making? For a lot of kids, the more they help plan and make their own lunches the more they want to eat the food. My friend started letting her picky eater help when he started school (he didn't have Celiac, but another condition that adversely affected his appetite) and it really helped get him eating.

[cardine45]

[smalltownslackermom]

Hi beckyhiker -

I'm new to this site and to celiac.
My 7yo ds had the blood panel done a couple of weeks ago and his ttg was 185 (pretty high I guess.) His biopsy will be next week. In the meantime the pediatric GI said to administer one slice of bread per day as the "dose" of gluten to keep his system in the celiac state. It is just so sick that this is the way it is done even with such a high ttg but we (dh and I) decided to go ahead with the biopsy so we would have an "official" diagnosis.
The reason we ended up having the blood tests in the first place is that we did "gluten-lite" as it were this past winter. I weaned ds off of wheat by making cinammon toast with the gf bread and by gradually reducing the amount of wheat in pancakes and any baked goods. He was not fooled by gf crackers or pasta however. He occassionally got glutened in social situations and his symptoms (primarily ADHD-like sensory defensiveness and slightly looser stools) came back immediately.
So, depending when your son's biopsy would be, perhaps you could try something like the weaning plan we did. My son's ttg was still high even after having gone thru this reduction for a few months but he did eat half a small regular pizza the evening before the blood test.
On the how to feed him side if/when you do put him on a gf diet, my ds is also a picky eater but he loves the Pamela's pancake mix and I make a similar one from scratch with the rice flour, almond flour, etc... I put about a tablespoon of pumpkin puree in them and I use walnut oil in them since it is high in O3s. He likes the Ian's chickn nuggets ok, I think he will adapt to them. We haven't found replacements yet for mac n cheese or his vegetarian tofu dogs but we are not full on gf yet so I am not worried.
In a book I've been reading through Kid-Friendly ADHD & Autism Cookbook and the MD author seems to think that some kids' pickiness will diminish over time after they get off the gluten, so we shall see about that in our case!
Good luck - I will be watching your thread with interest.
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative blodwork 5/09, pos. biopsy 11/09
sister - gf for 2 years and is a new person

[beckyhiker]

Hi, and thank you once again for all your helpful suggestions. Last night I let ds help me pick out ingredients for and help make a gf "Lunchables" meal for school today. He seemed to eat more of it than his other lunches, but I have to get better crackers.

Well, according to our pediatrician, we are unlikely to get an appointment with any gastro before the end of July, so I guess that we will just wait. At least that will give us a chance to feed ds lots of gluten after his gf 3 weeks is up. I'm not sure if I see any differences in him or not. At least he hasn't complained about having a headache, nor has he spent a lot of time sitting on the toilet, but he didn't do that all the time anyway. I'm waiting to see what his teacher and speech, OT, and PT say at the conclusion of this experiment. I'm going to steel myself for "no change noticed".

Smalltownslackermom, I was interested in your post. Maybe your son is like mine with the behavioral issues. I was sure that something would show up in his bloodtests because of all of the fatigue, but the ped just labelled it "chronic fatigue". It is, of course, possible that my ds complains of fatigue just to get out of doing things, but since he does it with everybody consistently I tend to feel that the fatigue is real. I like the idea of the pumkin puree for fiber and the oil for O3's. DS isn't a pancake guy, but maybe I can sneak them into something. Two Mac n' cheeses that we found to be really good are Annie's Rice Pasta and Cheddar (light blue box) and Amy's frozen. I think they are both yummy and so does my non-gf daughter (ds won't touch them). Maybe I'll look up the book you mentioned.

Thanks again everyone!

[smalltownslackermom]

As a mom who had a nagging feeling that ADHD wasn't the "real" diagnosis for my son, I stayed on alert with my son and observed and started putting the little puzzle pieces together. After my little experiments, I would have been VERY surprised if he had a negative TTG. No one else in his life ever thought of celiac, it was my mom instinct setting off the alarm to be observant, and look around for info and keep an open mind even when our medical community often does not.
This is all to say, "trust yourself." I'm not saying that I think your son's issues necessarily are or are not latent celiac. Just remember to trust yourself.
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative blodwork 5/09, pos. biopsy 11/09
sister - gf for 2 years and is a new person

[beckyhiker]

Hi again. Well the three weeks is up, so here is an update for what it is worth! At the end of last week, DS's teacher says that she has noticed no change in him (sigh). I've just sent a request for any observations to his speach teacher, so I don't know if she's seen anything. As far as my own observations go, I can't find any extremely clear cut difference. He says that he hasn't had any headaches and that he thought his stomach felt better. I haven't noticed any problems with toilet issues since early in the 1st week gf. Everything that I think that I might notice is subtle, so I can't be sure that it is real. The last few days he has eaten a lot more food at dinner time than is his norm. He's eaten from a different plate w/o complaining (!). I think I detect a slight (positive) difference in his overall behavior. But maybe it is all wishful thinking. Unfortunately nothing is day/night!

Now I have to decide about putting him back on gluten. I feel bad doing it, but I can see no reason to keep him gf. If he has a reaction to it, I hate to say it, but good! We really feel that he shouldn't be gf when we see the gastro in July. He'll be very happy to eat real pizza and chinese food (but I have to say, he's been great about being gf - I'm proud of him!). However, I worry that if he doesn't have celiac, but is gluten sensitive that his behavior will go downhill slowly with only gradual changes in how he feels. That the Developmental/Behavioral doc in June will see him in a glutened condition, not in an "optimal" gf condition. Ack - maybe the whole thing is a red herring anyway! Sorry, but it seems like such a quagmire and as I'm sure you other moms out there know, it is so much harder to tell what is going on with your child than with you!

Again, thank you all very much for your previous suggestions and for reading these posts! Have a great day!

[beckyhiker]

Oh, I forget in my other post to ask...does any one have an opinion about re-introducing gluten containing foods? Do we just drop the gf diet completely and let him eat whatever he wants, or take it more slowly and , e.g., just let him eat a bagel tomorrow?

Thanks again for all of your help!!

[smalltownslackermom]

Hi beckyhiker,
This past winter I would get my son to be GF for a couple weeks and then he'd have a day or two when he got to load up on grandma's homemade bread or Goldfish crackers or something. The bread brought on noticeable immediate behaviour degradation and usually the day after he'd be on the toilet a few times and need some help, iykwim. For us, going back and forth on gluten made it much easier to tell that he was affected by gluten and cleared up uncertainties.
I've read that reactions to gluten can be stronger after being gluten-free so that might be why it was more obvious for our ds. I understand how knowing if gluten makes him sick would be Good! because then you know what to do.
DS has been hard-core GF now for about a week and the weepiness has eased up and gone over those days. He's still got some attitude about things but I know from experience this gets a bit better and even then, we know not to expect a "Leave it to Beaver/Brady Bunch" household, don't we?
I would let him just go for it and hold onto your seat and patience! just in case.
btw - my ds was worse when he had to eat bread _every_ day before the biopsy. Even gluten-lite, where he would only get wheat once or twice a week, was easier than every day.
I understand the uncertainties. I had that for months. It took the going back and forth, as I said, to lift my doubts. By the end of a few months of it, my husband basically said that _I_ diagnosed our son and that getting the tests were just a formality...
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative blodwork 5/09, pos. biopsy 11/09
sister - gf for 2 years and is a new person