16 replies to this topic

[Minette]

Poor Sarah, who is 6, found out she had celiac over a month ago. After her bloodwork, we waited a month to see a pediatric GI close to us, but I was underwhelmed -- then we got a referral from a doctor friend to a pediatric celiac specialist at Children's in Denver, but still couldn't get in till June 1. So she can't go gluten-free for at least another month.

Her symptoms are not terrible (minor but frequent tummyaches, headaches, occasional joint pain, and moodiness which may or may not be related), and she's been living with them for years. But it feels cruel to keep telling her that giving up gluten will make her feel so much better, and then tell her that she has to stay on it for at least another month.

Will eating LESS gluten make her feel better in the meantime? (Not so much that it would mess up the tests -- but she eats tons of gluten now, so we could cut back without risk of that.) Are there any other things that might help her feel better physically, or ways to explain it to her so she doesn't feel so put-upon?

[Skylark]

How certain is her celiac diagnosis? Have you checked with the office of the specialist and made sure she needs to keep eating gluten?

If she absolutely needs to keep eating gluten, you can explain that the specialist will help write a special note for school so her teachers will understand the diet, but that he needs to see that she is sick to write the note.

[Carebear]

I would think less gluten would definitely be better. I cut down on most wheat things when I first suspected a wheat "allergy", but did not remove all gluten. I felt SO MUCH better. Then my sensitivity went up after going fully gluten free to the point where tiny traces destroy me (I am celiac, not a wheat allergy like I originally thought). I think a lot of people work like this. I agree with Skylark. Check with the physician's office to make sure she has to remain on a gluten-free diet, and how much she needs to eat. I refused to continue eating gluten, had positive blood tests over a week after going gluten-free, and had visible villi damage a month after going gluten-free. But I was diagnosed at 23 and have likely reacted to gluten my entire life. My symptoms were too devastating to continue the gluten challenge. I hate that the gold standard is the biopsy... shouldn't improvement on a gluten-free diet be the real test? Oh modern medicine...

[rosetapper23]

If you KNOW she has celiac, why are you continuing to feed her gluten? I don't understand. What more can the expert in Denver tell you that you don't already know? Did she have a positive blood test and you're now waiting for a biopsy? If so, it's really quite unnecessary. False positives on blood tests for celiac are quite rare. You can pretty much take it to the bank that she has celiac if her bloodwork was positive. Please....she needs to stop eating gluten.

[Darn210]

If you need a diagnosis from the doctor, don't stop the gluten. If you've got a doctor (pediatrician or your initial "meh" GI) that will diagnose her based on the blood test alone then switch to gluten free. If you want to just go gluten free without a diagnosis, there is nothing stopping you.

I will say this. I had a lot more "power" at my daughter's school with an official diagnosis. There were some big-time changes made there and it wouldn't have happened without an official diagnosis.

I don't know how far you live from Denver, but if you've got the flexibility to get into the GI at a somewhat quick notice, I would call the doctor's office and get on their cancellation list. Tell them how much notice you would need (4 hours? 24 hours?) You may be able to get in much sooner.

Good luck.

[Mizzo]

We were told we could eliminate up to a 1/2 cup pasta equivalent till the biopsy and the test would still be accurate.

[Cara in Boston]

My son was diagnosed at age 5. We spent our waiting time (seemed so long!) trying out new foods each week so that when it came time to stop gluten 100% we were already ready with a favorite pasta, frozen waffle, etc. He also loves to cook so we did lots of cooking "experiments" making gluten-free treats and things. I think it helped him (and me) realize that there would still be lots of choices and lots of good food ahead of us.

The best thing that happened was when we joined the support group at our hospital (after diagnosis). A big box arrived in the mail full of gluten-free foods of all kinds (Children's Hospital, so lots of the food samples were cookies and snacks) He was thrilled and his brother was so jealous.

Two books from the library helped a lot too:

"The gluten-free Kid" (sort of comic book made by a kid with celiac disease) and "Eating Gluten Free with Emily" (describes endoscopy and coping with diet at school and play dates).

Good luck - the waiting is hard but it will be over before you know it. Be thankful the symptoms are mild.

Cara

[Minette]

How certain is her celiac diagnosis? Have you checked with the office of the specialist and made sure she needs to keep eating gluten?

The diagnosis is pretty certain, but the specialist's office said she should stay on gluten until we see him, in case he wants to do a biopsy. If he decides a biopsy isn't necessary, we'll stop gluten right away. They also said that if he does want to do a biopsy, hopefully we won't have to wait more than a few more days.

I do want to have an official diagnosis. She has years and years of school, camp, college, etc. ahead of her and I don't want it to be "Mom says she can't eat gluten" -- I need a piece of paper with a doctor's name on it.

My son was diagnosed at age 5. We spent our waiting time (seemed so long!) trying out new foods each week so that when it came time to stop gluten 100% we were already ready with a favorite pasta, frozen waffle, etc. He also loves to cook so we did lots of cooking "experiments" making gluten-free treats and things. I think it helped him (and me) realize that there would still be lots of choices and lots of good food ahead of us.

The best thing that happened was when we joined the support group at our hospital (after diagnosis). A big box arrived in the mail full of gluten-free foods of all kinds (Children's Hospital, so lots of the food samples were cookies and snacks) He was thrilled and his brother was so jealous.

Two books from the library helped a lot too:

"The gluten-free Kid" (sort of comic book made by a kid with celiac disease) and "Eating Gluten Free with Emily" (describes endoscopy and coping with diet at school and play dates).

Good luck - the waiting is hard but it will be over before you know it. Be thankful the symptoms are mild.

Cara

I am definitely thankful for this!

We have "Eating Gluten Free with Emily," but so far she's refused to look at it. I think it makes her feel self-conscious. She's interested in talking about celiac and whether things are gluten-free or not, but for some reason the book just makes it feel too formal.

I've also been trying out new foods, but so far they've all gotten a "thumbs sideways" (her version of something in between "thumbs up" and "thumbs down"). I think I need to get more creative with this and make it a game or something. Maybe I could give her a little "rating book" where she can write down everything we try and give it a grade.

The support group is a great idea -- I'll have to see if our Children's Hospital has one!

[Cara in Boston]

I like the food critic idea - my son would enjoy that - maybe create a kid's blog or something.

One last suggestion: when we started out, we simply found acceptable gluten-free alternatives for the food we were currently eating instead of changing the way we eat. This was fine for my very active son, but I quickly put on about 10 pounds. The gluten free baked goods and pastas are really quite empty of nutrition and full of starchy carbs. Now, instead of just swapping regular cereal for gluten free cereal, we are trying to move to other breakfast items (scrambled eggs, fruit and yogurt smoothies, etc.) His school lunches are more "bento" style rather than a standard sandwich on gluten free bread. You get the idea. I think this will help in the long run too - gluten-free specialty food is expensive and sometimes hard to find when traveling. Now that he is used to rice instead of gluten-free pasta, he seems more flexible and easier to feed.

Working for me too . . . a pound or two of gluten-free flab is coming off each week.

His favorite "new" breakfast is the "1 minute flax muffin" (just google it - very popular with low carb dieters). We use real sugar in ours, and add chopped fruit (today was apple, yesterday banana) and serve it with vanilla greek yogurt drizzled on top like frosting. I make them in a ramekin so they are shaped more like a muffin or cupcake. Now, everyone in the family is eating it . . . not just us gluten-free people. It is pretty good.

Cara

[melaniesilvers]

This is exactly what we are going through with our 3.5 yr old. His blood work came back positive, but we had to WAIT to see a ped GI and now we are WAITING for our endoscopy. I feel so guilty as a parent feeding my son food that makes his belly hurt. Glad to know I'm not alone. Luckily our endoscopy has been scheduled for next week.

[Darn210]

I will say that my wait for the GI appointment was a LOT longer (months) than my wait for the endoscopy (a week). Of course, while we were waiting for the GI, we didn't know what the heck was wrong so we weren't left with the same kind of dilema of knowing what will fix it and having to wait to start.

Something that may or may not help with the symptoms . . . you could have her take a digestive enzyme and/or lactaid pills with dairy.

[Minette]

That 1 minute flax muffin sounds great! What a good idea. Plus, she actually eats muffins and is reasonably flexible about what's in them as long as they're basically sweet. And it puffs up on top if you make it in a shorter container? It was a little unclear from the picture I found, whether the consistency would be solid like a muffin, or more like a molten chocolate cake.

I've never bought flax seed meal in my life, but I'm going to try this! (I assume that's different from ground flax seed... or not?)

[Cara in Boston]

Ground flax = flax meal. We buy Bob's Red Mill.

We've been making a different "flavor" every day. I think I will take your idea and have my boys rank them best to worst. (but they have all been good.)

They are a weird texture . . .when warm, more like a cross between a muffin and bread pudding. When cool, they are like a very dense muffin. Not light and cake like at all. So far we've done pear/cinnamon, apple cinnamon, and chocolate/zucchini. Tomorrow is chocolate/banana . . . Comes out of the ramekin like a muffin/hockey puck. (Thats why we did the "frosting" on top . . . made it much prettier.) Be warned: there is lots of fiber in flax seed. Only eat one a day (my boys wanted them for snack and lunch too . . .)

Also - I subbed applesauce for the oil (since I'm not trying to reduce the carbs) and it worked perfectly.

[kb27]

I agree with a lot of what the others said: the wait for the GI felt really long, esp. since we had a positive blood test and kind of knew we would be going gluten-free. But I did want a diagnosis in hand for school/camp/etc.

We spent the wait time testing out recipes for things like pizza crust, birthday cake (one of my son's had a birthday right after the endoscopy), pancakes, etc. Some were miserable failures and I let my kids give me their honest feedback. When we did hit upon recipes that worked, they were clearly thrilled. By the time we had to go completely gluten-free, we could make pizza, pie, muffins, pancakes, etc. It made the transition a little smoother because some things worked and the boys were in the right mood to realize that mom was floundering a bit here and in "testing" mode. They didn't expect perfection.

[mamaupupup]

Hi Minette,
I know-the wait is terrible. I did one thing to ease my mind in terms of the kids: I made gluten free dinners. One of my girls' joint pain improved a bit.

I did a lot to make myself feel better: I started cleaning! I put all things with gluten in a box in the corner of the kitchen...I cleaned cabinets...I researched for a new toaster...I put together a gift basket for each girl to give them after their biopsies...somehow all that activity helped me.

Also, you might try calling the doctor every week to see if there is a cancellation.

Thinking of you!