13 replies to this topic

[BeHappy!]

Hi, I'm new to the forum. I just found out that my daughter most probably has celiac disease. she has been having problems ever since she is a baby on and off...I finally took her to a gastro who suspected celiac right away, but sent me out for lots of blood work to rule everything out. Well, it came back positive for celiac. She's three years old. She needs an endoscopy to confirm, but it looks likely. The doctor also thinks she has acid reflux and a heavy milk allergy on top of it all. This is a lot to take in right now and everyone seems to be saying the wrong things.... her school wants to kick her out because she is showing tremendous anxiety in the classroom and not keeping up (even though she is perfectly capable... this is also her first school experience ever.) I'm thinking a nice amount of her anxiety has to do with the celiac. As of now she is still eating gluten until her endoscopy. Are the two connected? I'm new to all this and could be totally wrong, and between all these new results and the school on my head to kick her out I'm one big mess. I keep saying that I will be able to do it, but everyone is just so stupid with their comments! "Oh, that's not so bad!" or "Hey! that's good! You're whole family will be extra healthy now!" Seriously?? I could use some support....

Thank you for listening

[RiceGuy]

Since the tests are very unreliable, especially for children under about six years old, I think you are fortunate to have gotten a positive. That is, if it's true that she has Celiac, which seems likely.

Do keep in mind, that the endoscopy can also show a false negative, so it is always wise to try the gluten-free diet regardless of the results.

Yes, anxiety is a common symptom for many people with Celiac, and I think chances are high that she'll experience quite an improvement there as well.

If you choose to get the endoscopy done, I'd highly recommend getting it over with ASAP, so you can start her on the diet even before the results are in.

The diet is the best test there is, so don't let anyone talk you out of trying it. It is also very normal to feel overwhelmed at first, but as many on this board can tell you, it does get easier. Really! And yes, the gluten-free diet can be a very healthy one. The typical advice is to start with whole, unprocessed foods for awhile. This helps the body heal more efficiently and effectively. It is also much easier to avoid gluten this way. Skip the prepackaged gluten-free stuff until she's doing well. If you can bake your own gluten-free breads, it will not only be more economical, but more healthy, enjoyable and satisfying (the prepackaged ones tend to be mostly disappointing). But do be prepared for a few failures until you get the hang of it, and try not to get frustrated and give up. But again, it's often best not to dive into gluten-free versions of traditional gluten-based foods until feeling better.

Welcome to the board!

[vegan lisa]

I wanted to chime in here. I'm a mom to a daughter with multiple food allergies. I'm the one with gluten issues.

As a parent who had to face food issues with a child, I totally hear and feel your anxiety! I had a real serious adjustment period getting used to my daughter's food restrictions. You will find a way to manage for your family. My daughter was diagnosed 7 years ago and it does get better and it gets much much easier. Support groups like this one are fabulous and will give you lots of ideas on how to cope emotionally and how to manage it all in a practical sense.

Hugs to you and your daughter. Once she is feeling well, you'll be really motivated and that will give you encouragement when the going gets tough. It's hard and I try to keep in mind that many illness have no good treatment.

-Lisa

[mommida]

You are right, it is hard!
Especially in the beginning. Your head is swimming trying to find information and there is a panic "what are we going to eat!!?"
You are in luck! We have some old pros around that can help you find replacements for favorite snacks, and offer taste test testimonials. We have people who have many diet restrictions.
Start finding you daughters favorite gluten, free casein free snacks and keep them on hand. Kids are offered candy and treats all the time. Have something safe to give her or else the diet will seem like a punishment.

[shopgirl]

Oh, you could definitely be on the right track with the anxiety. One of my worst, most detrimental symptoms was anxiety. It didn't disappear overnight after being diagnosed (but then, I'm 27 years old) but it has started to taper off. My panic and anxiety attacks are gone. I'm definitely less irritable. I still worry sometimes but I've been told by the incredibly grateful people around me that I'm much more pleasant where the anxiety is concerned.

I agree with the others that gluten could definitely be causing your little girl's anxiety.

[GFinDC]

It's very common for untreated (not on the gluten-free diet) celiacs to have lactose intolerance. It would probably help her to get off dairy and soy as well when starting the diet. There are hemp milks and coconut milks in many stores. Also coconut ice creams. Also check the recipe section of this forum for lots of great meal ideas. Try a search for breakfast ideas or snack ideas for starters. Welcome to the site!

[BeHappy!]

Thank you so much everyone! You've really been a great help! She has been off of dairy products for a while now, she seems to be doing very well with soy. It happens to be I just gave her milk today to see if she reacts to it (maybe I thought it was the milk, but it was really the wheat? I'm kind of testing her... it's not like she's in school now anyway....)
About how long after she stops eating gluten would I notice a difference in her anxiety? Also, when she starts this diet, does it matter if the food I prepare for her is cooked in my regular pots (if they're cleaned of course) or should I buy a couple of new pots?
So many questions!!!

[GFinDC]

I suggest using dedicated pots for cooking her food, and not using them for any gluten foods. I boiled my pots for an hour with soap and water and have been ok with them, but I wouldn't want to do that every time I cooked something. Another problem is sharing butter, or peanut butter jars or mayo etc. If you use the same knife for a gluten bread and use it in the jar then you have contaminated the whole jar. So it may be simpler to just get her separate jars of things and label them gluten-free. Same with toasters, she will need her own toaster that is gluten-free only. It would also be smart to keep her gluten-free foods on the top shelf of the refrigerator so crumbs of gluten don't fall in them.

I really think soy should be out for a few months/years though. It causes lots of problems even for non-celiacs.

Mental affects can be some of the slowest to change it seems. So it may take awhile for that to happen. She should have her vitamin levels checked for B, D, iron etc so you know if she is deficient in any of them. Celiacs don't absorb nutrients correctly when untreated and she may be lacking some critical vitamins.

[BeHappy!]

I'm intimidated. Extremely intimidated...I'm not sure how we're going to get through this. How is she supposed to get through school?? Sharing snacks and all... how much self control can she have??? How can I help her not feel deprived?? Or when we get takeout for the family...how is that going to make her feel???

[Dixiebell]

It is a learning curve but it does get easier. She will learn what she can and can't have. You will too. You will also make some mistakes along the way, everyone does.
My son told me a few days ago, the one thing he missed the most is goldfish crackers. Everything else we have been able to make ourselves or buy pre-made.

-How is she supposed to get through school?? Sharing snacks and all... how much self control can she have???
You will send safe snacks for her and notes to the nurse and all her teachers.

-How can I help her not feel deprived??
She may feel deprived in the begining, but it will pass when you find replacements that she likes.

-Or when we get takeout for the family...how is that going to make her feel???
In the begining you may have to make her some foods that are similar to the take out foods or just don't do take out for a while. Honestly, it is so much easier for the whole house to eat gluten free meals. If you need help with recipies just ask. There are a lot of meals that are naturally gluten free.

[GFinDC]

Re takeout, there are gluten-free noodles available in many stores. Tinkyada brand is well liked. You should know that most soy sauce has gluten (wheat) in it. There are wheat free soy alternatives like Tamari, if you want to make your own take-out style Chinese food at home. There are recipes on this site for soy sauce subs also.

It's not a bad thing to be a little extra careful at first when starting her on the diet. Many processed foods are a potential problem due to gluten being added as a filler or stabilizer. But there are some that are naturally gluten-free also, and can be eaten safely. Organic or natural style foods often have fewer ingredients to check.

Your school should be told about the medical situation. There are other people with celiac and peanut allergies, diabetes etc that need special diets. So they should have a basic understanding of the need for a medical diet. I don't know that I would trust them to prepare her food though. But keeping teachers from passing out gluteney treats to her or other kids sharing foods may be workable.

If she has symptoms from gluten she can learn to refuse things after a while too. Just what we need another woman saying "NO!" Ha ha just kidding!

[BeHappy!]

I have to say, I am so happy I found this site. You're all so kind! Thank you for all your help!
How would I know if regular non-gluten food that I buy isn't being processed on equipment that also manufactures gluten?

[psawyer]

I have to say, I am so happy I found this site. You're all so kind! Thank you for all your help!
How would I know if regular non-gluten food that I buy isn't being processed on equipment that also manufactures gluten?

You could call the manufacturer and ask. Many companies voluntarily place a notice on the label that the product is produced on shared equipment. But is is voluntary.

I don't get overly worked up about this. I eat at restaurants from time to time, and understand that the plates and cutlery are shared between gluten-free customers and those eating gluten. They get washed between customers. But they are "shared equipment."

[vegan lisa]

Hi! Everything will be ok. I promise. My 7 year old daughter has IgE allergies to milk, eggs, peanuts, rice, potatoes, fish, beef, chicken and pork. She reacts to trace amounts and to skin contact (hives if she even touches the food). She's had life-threatening reactions to accidental ingestion (not often) and carries (and has used) an epi-pen everywhere. Despite the long list of foods she can't have, she is surely not deprived. Over the years, I've learned to cook many a delicious treat using her safe ingredients. At school, she has a strict rule that she only has food from home that she brings. All the adults and other kids know they can't offer my child food, and my child knows she can't accept any food from anyone but me. It's a little effort to keep up with the birthdays, holiday parties, etc, but it's really not so bad. School is totally manageable.

As for take out, we don't do it. It works for many people, but just not for us. My daughter doesn't eat out, and on rare occasions (vacations, usually, maybe once or twice a year) when she has to accompany someone to a restaurant, she's been able to get a juice and brings her own food (usually something delicious and junky). It took awhile to get used to having to cook every night, but I have a few quick dinners up my sleeve that I can pull out when I need a quick dinner for everyone.

If you asked my daughter if she wished her allergies would go away, she would say no. She's happy with her food, and frankly, happy she doesn't have to eat food she doesn't like just to be polite. She's also so happy to be healthy, she doesn't want to feel sick just for a food.

Now, she's only 7, and the tough years are ahead of us where she wants to be like her friends, but she's never missed a social event that she wanted to attend, and I plan to keep doing whatever I can to make it work.

Good luck! It's hard, but not impossible. (and the panic you feel will come and go!) And truly, my daughter is happy, well adjusted, and does not feel deprived at all.

Lisa