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Just Starting This Journey

MusicMama

By MusicMama
in Coping with Celiac Disease

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MusicMama Newbie
MusicMama
Posted

I was told this week that it looks like my 14 yo dd has celiacs. She is scheduled for an endoscopy/biopsy on the 30th. The doc was very cold and offered no solutions for me other than, "It looks at this point like it's Celiac's Disease. She can no longer tolerate any glutens." And that was it. I was on my own. I thought that I would just have to change our diet to gluten-free. Um - yeah - no so fast, Mama! Trial and error made me realize that I need to find a few foods she can tolerate until she heals. At this point we are at bananas, rice and chicken. We tried eggs and it takes 3 hours before her pains go away.

I've been scouring this site and I'm thankful for all the useful info I've found. Any other tips for the newly diagnosed and how I can best help her would be greatly appreciated. She and I cleaned out a cupboard yesterday and made it hers. We have begun shopping for 'her food' even though it'll be weeks before she is probably able to eat any of it. She's tired of feeling sick all the time. It was on Oct. 25th that the 'switch' changed in her life. At least now we have a direction to go...

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cassP Contributor
cassP
Posted

what about juicing/blending fruits & veggies that provide nutrients- and putting it into juice form could be easier to digest- maybe blend a 1/2 mango with that banana... or spinach & pineapple... enough to get healthy- but not enough to aggravate "D"...

or totally mash up cooked broccoli & peas- mix it with the rice ?

also a big tbsp of L-Glutamine powder mixed with water at night is supposed to help heal the intestines.

shopgirl Contributor
shopgirl
Posted

You took her off gluten before her blood test and biopsy or am I just reading that wrong? She needs to stay on gluten until she's tested or you're risking a false negative.

Kimbalou Enthusiast
Kimbalou
Posted

You took her off gluten before her blood test and biopsy or am I just reading that wrong? She needs to stay on gluten until she's tested or you're risking a false negative.

I don't understand the need to stay on gluten before a biopsy. I had a strongly positive blood test and I don't even think I will do the biopsy. It seems like an unnecessary risk to take when I already know the blood work is positive and I have the symptoms. And if it takes 6 months-1 year to heal, I don't think the biopsy would be negative if you go off gluten for a week or so.

Kimbalou Enthusiast
Kimbalou
Posted

I was told this week that it looks like my 14 yo dd has celiacs. She is scheduled for an endoscopy/biopsy on the 30th. The doc was very cold and offered no solutions for me other than, "It looks at this point like it's Celiac's Disease. She can no longer tolerate any glutens." And that was it. I was on my own. I thought that I would just have to change our diet to gluten-free. Um - yeah - no so fast, Mama! Trial and error made me realize that I need to find a few foods she can tolerate until she heals. At this point we are at bananas, rice and chicken. We tried eggs and it takes 3 hours before her pains go away.

I've been scouring this site and I'm thankful for all the useful info I've found. Any other tips for the newly diagnosed and how I can best help her would be greatly appreciated. She and I cleaned out a cupboard yesterday and made it hers. We have begun shopping for 'her food' even though it'll be weeks before she is probably able to eat any of it. She's tired of feeling sick all the time. It was on Oct. 25th that the 'switch' changed in her life. At least now we have a direction to go...

Did she have a blood test for it? i was just diagnosed on Friday after a positive blood test. My 16 yo daughter has had signs of this disease. I am going to get her tested but she is freaked out by needles and shots. This is not going to be fun. My sympathies to you! :) This age is hard!

cyberprof Enthusiast
cyberprof
Posted

You took her off gluten before her blood test and biopsy or am I just reading that wrong? She needs to stay on gluten until she's tested or you're risking a false negative.

Well, yes and no.

The 30th isn't that far away. If she has villi destruction, it is unlikely it would heal in less than two weeks. And if the kid can't eat without extreme pain, it may be hard to convince her to eat wheat bread, wheat pasta etc. But if she's going through the endoscopy, it'd be good to have a true diagnosis for things like ADA accommodations in college dorms etc.

My advice would be to have her try to eat a few pieces of bread a day but if she can't and gets a negative biopsy, remember two things: 1) A POSITIVE blood test for celiac is rarely wrong and 2) the biopsy can be wrong...the biopsy is dependent upon sampling just the right areas. So if she were to get a negative biopsy, I would say that she should still consider herself a celiac and eat accordingly. Oh, and make sure that the GI doing the endoscopy, (insist !!) takes at least 5-6 biopsies to up the odds of sampling an area that is damaged, as damage can be patchy.

Mama, a lot of us here (me, for one) were in a lot of pain after diagnosis no matter what we ate. After the endoscopy, I suggest a bland diet with lots of rice, chicken/turkey, cooked veggies (green beans, zucchini), canned pears, sweet potatoes. Don't add back a lot of new foods (especially gluten-free treats) at once. Add one food at a time. And realize that she may be intolerant (temporarily or permanently) of dairy, soy and/or eggs.

The good news is that kids heal faster than adults (6 mos. for kids is what I read versus up to 2 years for adults). My 15y.o. son's comment at the time was: "I didn't realize that eating wasn't supposed to hurt." (Saddest moment for me as a mom to realize that he'd been hurting for years.) Best of luck to you and your daughter.

cyberprof Enthusiast
cyberprof
Posted

I was told this week that it looks like my 14 yo dd has celiacs. She is scheduled for an endoscopy/biopsy on the 30th. The doc was very cold and offered no solutions for me other than, "It looks at this point like it's Celiac's Disease. She can no longer tolerate any glutens." And that was it. I was on my own. I thought that I would just have to change our diet to gluten-free. Um - yeah - no so fast, Mama! Trial and error made me realize that I need to find a few foods she can tolerate until she heals. At this point we are at bananas, rice and chicken. We tried eggs and it takes 3 hours before her pains go away.

I've been scouring this site and I'm thankful for all the useful info I've found. Any other tips for the newly diagnosed and how I can best help her would be greatly appreciated. She and I cleaned out a cupboard yesterday and made it hers. We have begun shopping for 'her food' even though it'll be weeks before she is probably able to eat any of it. She's tired of feeling sick all the time. It was on Oct. 25th that the 'switch' changed in her life. At least now we have a direction to go...

Oh, and I forgot to say "Welcome!"

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sb2178 Enthusiast
sb2178
Posted

Sweet potatoes, squash, white fish like cod, cooked pears, cooked carrots, and time. Millet is another option instead of rice.

I'd still give some gluten for the next week. Kids heal faster, and one week of misery will probably be worth it if it makes dealing with institutions easier for her in the future, as awful as it is. Tell her it's her to hang in there and it's her last chance for pastries or other favorites until she's healed enough to have gluten-free versions.

The upside of the biopsy is that is does give a measure of the extent of damage in her intestines, a baseline, to refer back to if you should need to in the future. And some docs/institutions will only accept biopsy-based diagnoses.

cyberprof Enthusiast
cyberprof
Posted

Tell her it's her to hang in there and it's her last chance for pastries or other favorites until she's healed enough to have gluten-free versions.

Yeah, if you're in the U.S., it'll be her last time for Thanksgiving stuffing and pies. The gluten-free versions can be good but take more work. See www.glutenfreegirl.com and Open Original Shared Link for ideas for next year.

jess-gf Explorer
jess-gf
Posted

Yeah, if you're in the U.S., it'll be her last time for Thanksgiving stuffing and pies. The gluten-free versions can be good but take more work. See www.glutenfreegirl.com and Open Original Shared Link for ideas for next year.

I am going to try this gluten-free pie myself: Open Original Shared Link it's basially normal pumpkin pie but with crushed gluten-free ginger snapps as the crust. I think I'll actually like that better than regular crust! Pumpkin is pretty healthy I think and she might be able to eat that okay, though I'm not sure since you said she had problems with eggs. You can probably also sub the milk pretty easily with coconut/almond/rice milk.

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