It Looks Like My Daughter Has It Too

[TenKLady]

Hi Everyone,

I was diagnosed by blood and biopsy four years ago. I have been reading this forum for over a year and it has been very helpful and therapeutic for me to know that there are others out there going through the same things that I do.

I suspected that my 12 year old daughter might have celiac disease because she has been getting a lot of migrain headaches, stomach pain, nausea, gastrointestinal problems, etc. When she had her well child check-up last week, I asked for her to have the celiac panel done. I was really hoping that everything would come back normal but it didn't. Her blood test came back positive for celiac. Now the next step for us is to see a pediatric GI doctor. I am not putting her on the gluten free diet until all testing is completed but ultimately I know that she will have to go on it.

My husband told her about her test and she was very upset about it initially but she seems to be O.K. with it now. I know this is going to be so hard for her at her age to not be able to eat the same things as her friends. I feel so bad for her.

Those of you with kids- How do your children deal with this at school, going to birthday parties, etc.?

Laura

[aklap]

Hi Laura,

OH NO! I am sorry to hear that. It's hard enough to deal with this as an adult, but for a child...it's got to be a lot harder.

I'm sorry I don't have any kids, so I can't offer much help in that area. Just know that I'll do whatever I can.

Do you have a GF household? I think with kids, it'd be much easier to have it that way. We have a split house, but there's only Peg and I. And since Peg is great about cleaning up crumbs and such...I don't have to worry. Now....If I was the NGF person in the house...cleaning up crumbs...might be a bit more difficult

On the bright side...you caught it early and she will not have to suffer needlessly for years. She may not understand this now...but give her a few years and I think she will.

One other positive thing...This will be a great bonding point for a mother and dauther. You might find it will bring you two closer than ever. Keep it positive and you gals will do OK!!

Good luck TenKLady & TenKDaughter (or would that be 5KDaughter hehehe). Keep us updated.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[cruelshoes]

My son is 7, so his situation will be a little different than your daughter's, but here is what we do. I have a written agreement with the school that they are never to feed him anything that I have not pre-approved. They are to notify me ahead of time for any cooking events and I provide gluten-free alternatives if needed. Since birthday parties often come up without notice (the dreaded cupcake event), I have a stash of treats in his class (envirokids crispy rice bars and M'azing bars (the PB one, the crispy one is not GF)). That way he doesn't feel totally left out.

For birthday parties or get togethers, I talk to the parents ahead of time and find out what they are serving so I can give him the same thing. Usually I will send along a personal sized pizza that I make from scratch and a cupcake or two in the same flavor as the other kids are having.

I also volunteer to help out on thing he is involved in so I can keep an eye on things. He does not try to cheat (so far), so I am not worried about his compliance, but I am always concerned about some well-intentioned adult that might give him something he can't have. There was
a children's activity at church a month or so ago, and they were serving chicken nuggets, french fries and cupcakes. I volunteered to help out, and they were only too happy to have me. That way I could make sure he got the GF nuggets, fries and cupcakes I brought. I force myself not to hover over him, though, which is really hard sometimes.

I think one of the reasons he does not try to cheat is because he gets to eat the same kinds of things as the other kids, just the GF variety. We are also totally GF in our house, so the food he is used to is GF anyway. I also keep a stash of treats and granola bars in the car for unexpected events.

HTH.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[Guest]

I keep cupcakes in the freezer, her teacher has a goody jar just for my daughter which I keep stocked, lunches come from home whether it's for school or visiting. I keep a few snacks in a small cooler type lunch box in the car just in case. I find this really works well. I am the cooking leader for our 4-H group and I RARELY swchedule gluten containing projects. It allows for my daughter to have a group she would never otherwise belong to. It helps minimize her left out feelings in other areas. We also have a standing rule in our house... If it isn't GF it doesn't go in my oven! Nothing is worse than smelling a freshed baked goody you cant eat.

[TenKLady]

Thank you all for your advice regarding my daughter. Our household isn't entirely GF at this point although I am the one who does the cooking and all of the meals that I prepare are GF. We are very careful about cross contamination issues, too.

We have an appointment scheduled with the pediatric GI on the 25th and I was told that they will probably want to do a biopsy.

I really appreciate the support and I will keep you posted on the outcome.

Laura

[annasmamma]

Hello, we are new to the group. My daughter is almost 7 and she was gluten sensitive so we kept her off of gluten since birth. Anytime she had gluten we knew, I suspect celiac but we never got a biopsy and her last blood test turned up negative. We had taken her off of gluten before the test and our GP knew nothing about any of this. Recently she was having the same problem with dairy as when she gets gluten. We realized that she is dairy intolerant and took out all lactose. She is feeling worlds better after three days of gfcf diet. Has anyone had experience with becoming intolerant of other things after eating them for years? She has had dairy since she was a little one but never had the cramping, ibs etc.

On a lighter note we love the Rogers and Dowd Italian CHestnut flour cake mix. It does contain buttermilk in the mix so we are staying away from that. I think that we may introduce goat or sheep milk in a small quantity in a few weeks, does anyone have any thoughts on that?

Thanks

[Noatak]

I don't see what the harm would be in trying out different types of milk. The only way you'll know if your daughter will be able to tolerate it is if she tries it. So if dairy is missed in the diet, I'd try it out in small amounts. Can't hurt and then you'll know!

As a person with other allergies, it is very common for people to become intolerant of some foods after years of eating them. Your body may go into overload and all of a sudden, the food no longer agree's with you. I am hoping I don't have that experience because being gluten free is enough!

The Rogers and Dowd cake mixes are phenominal! I tried the lemon one and made a GF cocoanut buttercream frosting for it and my husband, who is not Celiac, said it was absolutely delicious and he never would have known it was GF if I hadn't told him. Although he would know as when would a Celiac make a regular cake? They are expensive but we're talking cake here, people!!!!

Does anyone have the experience when smelling regular wheat toast as it's cooking in the toaster, of it having a certain smell that's really disagreeable? Since going GF, I notice smells I used to like are not so good anymore. My husband will be using the toaster out on the deck soon.....

[aklap]

Hi Anna's Mom,

Like Lisa said, it's not uncommon for you to "aquire" a sensitivity to a food. Lactose intolerance is very common in Celiacs. Often times they will find once the stomach heals (the tips of the villi produce lactase - an enzyme the breaks down lactose) they find they can tolerate some dairy. In Anna's case, if she's gluten free, she should have no damage.

It may also be a casein sensitivity. Casein is the protein compontent of milk. Lactose is a sugar component. Usually thinks like aged hard cheeses have little lactose - does she react to those type of cheeses?

Some have had good luck with goats milk. Some called it the "mother milk" or "universal milk". While goats milk still has lactose and casein...it is lower than cow's milk.

It's certainly worth a try.

Good luck...let us know how things go!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[duchessisa]

I feel like a cheater but I have to ask....Does anyone else simply take lactaid when eating dairy? It works wonders for me (mildly intolerant) and really well with my daughter unless it is some highly sweetend, lots of additives, lactose off the scale food--like In n' Outs strawberry shake.

[Guest]

Hi, I am new to this forum but your delimna with your daughter reminds me of mine. My daughter is 11 and when she was 5 she tested postive on the blood test and negative in the biopsy. Doctor said he had NEVER seen that happen before. He did the blood test again and sure enough that is the way she tested. SHe is a gluten hog. Loves noodles and breads. However I now see her having alot of nausea. I think it is time for another biopsy. At the time of her first one she was not damaged yet. Maybe now we can start a gluten free home. I have found a great natural juice that promotes digestion called Mangosteen juice. It is from the Mangosteen fruit grown in Thialand. It is by Xango. Wonderful for all sorts of ailments. You can learn more at the Library of Medicine on line at www.pubmed.com and put in Mangosteen and learn about all they have learned about the benefits. Hope this helps.
Karen Klotz

[TenKLady]

Hi,

My 12 year old daughter was supposed to have an endoscopy done in February, but she wasn't thinking and ate a miniature candy bar an hour before we were supposed to leave for the hospital. We had to reschedule the procedure for March. We got her results back this past week and they were positive. The doctor said it was a text book case with damage showing in every sample he took.

I've tried to let her have some control in the situation and let her decide when the day would be to go completely gluten free. She decided that Monday is the day. We went shopping yesterday and loaded up with gluten free things that she would like to eat.

Now I need to have my 10 year old screened. The doctor said that if her test came back positive for antibodies, he would not think it necessary to do a biopsy on her but just start the gluten free diet.

Laura

[Kimmus]

That was a great idea to let her have some control over when to start the diet. My daughter was diagnosed right after her 14th birthday. She has pretty much taken it in stride, although I know there are times when it bothers her that she cannot eat what the other kids are eating. The middle school teachers were wonderful as they let us know when there were going to be food days. I gave them a list of the safe 'candy' so they usually had plenty of choices of things to have on hand. The same with her youth group leaders. They usually have microwave popcorn at the youthgroup meetings now -- I think that is better than candy anyway! She always takes a sack lunch to school. Her friends have been wonderful and are very much the 'watchdogs' over what she is eating -- it cracks me up. We are pretty much a GF household -- except for a loaf of bread and some cereal that my other children and husband eat. My daughter does 'check in' here occasionally. I think her login name is Peach. Please feel free to have your daughter ask her any questions that she may have as well!
_________________
Kim --
Mom of a celiac teen (GF BD Oct-04)

[gamom]

My 10-yr old daughter has been diagnosed with a wheat allergy, along with 18 other things. She has been on allergy shots for about 7 months, which has helped the other problems. We took the dairy out of her diet for the most part because we can tell what it is doing to her. The wheat, however, did not appear to be affecting her, so we let that stay. She has recently started having a migraine that will not go away for anything - it gets a little better, but never completely goes away. The doctors have ruled out the obvious brain tumors and just keep telling me she has a migraine. A 10-yr old should not have a severe migraine for 5 weeks without a break, but until this week, we did not have a doctor who would test her for anything else. (We were even told that our straight-A student just didn't want to go to school...) She's fatigued, pale, dizzy, and generally doesn't want to eat because she feels bad, but her lab work is text book normal. She apparently hasn't been feeling "right" in months, and it has just been getting worse.

We came across this possibility last night - my daughter simply asked when we could start the diet...she just wants to feel better.
Any suggestions? Am I on the right track or not even close? HELP

[TenKLady]

Kimmus,

Thanks for the suggestions. Our household is like yours where we are pretty much gluten free except for some snacks and bread that everyone else in the family eats. I have spoken to the principal of the middle school that Jessica will be attending next year and she said the teachers are good about dealing with this sort of thing. Jessica was thrilled to know about your daughter and may be asking her questions as time goes on. She just got braces on her teeth yesterday so she has that to deal with too.

Gamom, my daughter had symptoms similar to yours which started a year ago. She would complain of severe headaches, dizziness, and she was very pale. I thought it had something to do with her allergies. As time went on the symptoms became worse with vomiting and intestinal problems. I decided to have her screened for CD at her well child checkup and the test came back positive. If your daughter has not had the CD panel done, I would start with that.

Laura

[aklap]