New Here- My Story And Concerns

[WorshipfulHeart]

Hello all,

I am new here and have been looking around a little bit. I have a 13 yo daughter, she has not had actual celiac testing but recently had some allergy testing done and tested positively allergic to wheat, rye, barley, corn and a few other things.

I don't know if anyone else has experienced the frustration I have with the medical community but I knew NOTHING about food allergies. My daughter has had health issues since she was a toddler and some things became increasingly worse. She has almost always had really dark circles under her eyes, ADD, severe mood swings, etc- nothing that I knew would be tied to food allergies. I had taken my daughter to several doctors all who either wanted to put her on medication or send her to a psychiatrist. Nothing helped and most of the time I was looked at as if I were exaggerating things or insane myself. I homeschool and had my daughter in school for one year when we moved- we were on the verge of being looked at by child protection because of her problems at school and here severly unhealthy looks. Finally, I became friends with someone who is a nutritionist and suggested to me that she may have food allergies. she suggested we take her off of dairy and see what happens. No results came of this and finally I took her to an allergist and had her tested - after testing positive to a large amount of the foods on the list and everything containing gluten- this doctor suggested no special diet. He said take her off of these foods for a while, then reintroduce them and she should be fine and again medication was suggested! I never heard of gluten intolerance, celiac disease, etc. Just before this my daughter started throwing up- she would have three or four day bouts of not being able to keep anything down. This allergist told me that this and all of the other symptoms I described had nothing to do with her allergies- only the exzema was directly related.

At this point I feel I am hitting a brick wall, getting nowhere and my daughter is getting sicker.

I gave my friend her list and she suggested a gluten free diet- it took a little bit to get understanding and get in the swing of things but she has been on a 100% gluten and corn free diet for a few months now. Everything that was supposed to have nothing to do with food allergies according to the doctors i had seen has cleard up almost completely.

The ADD is GONE!!!! The mood swings are almost nonexistant, her eyes are clear and sparkly, throwing up has stopped (one more issue had to be dealt with for this - I will get to that in a second) she is gaining weight and able to get her schooling done- she is so much more joyful and pleasant - it is amazing!!

For a little while we had troubles with her getting sick in the shower- I did not understand this and the significance of gluten in bath products. She would be fine all day, go to take a shower and get very nauseated and come out with her eyes slightly dark. I never knew this could be a problem. So now we are in the process of becoming a gluten-free household, I find that it is so much easier to prepare all the same meals , ensuring no cross contamination or other problems. We have gotten rid of all of the glutenous bath products (BTW - if anyone has any suggestions about where I can get reasonably priced gluten-free bath products or what brands are the best I would really appreciate it- I often spend too much time reading ingredients and I don't always know what to look for just yet)

Right now my biggest issue is travel and eating out. We do not do this very but on the occasions we do, it has been a challenge. My daughter is getting very frustrated because she feels no matter where we go she can only have a salad. Aside from the gluten, we really have to be careful of corn - corn, corn starch, corn syrup has caused some extreme reactions for her. I am writing from a hotel room right now feeling frustrated and my daughter is a bit upset. We were able to accompany my hubby on a trip w/ his company. Because he would be in class all day, I prepared easy to deal with breakfasts and lunches to carry in our picnic baskeyt and cooler, but last night we went to dinner with him and his coworkers and it was rough - I did not know where we were going, I did not have time to preplan nad I had no clue how to approach the staff and talk to them about our needs. My daughter ends up feeling bad like she is making things difficult for people and I am just not familiar with how to do this at all. We will be going out again tonight and I just want to hide in the hotel room! Aside from this no one at the table had any understanding of why we had to order differently for her. I only have two friends that are familiar with food allergies and their severity and neither one of them is celiac savvy so I am feeling like I am wandering in the dark all the time, and I know that my ignorance and frustration is not helping my daughter to cope any better, though I have to say that aside from eating out - she has an amazing attitude about this and an amazing self control regarding staying away from things that she has eaten all of her life, knowing that it will make her sick.

I am sorry this has been so long. I am looking forward to learning what I can, meeting others who are going through the same things and one day helping others in the same situation I am in now.

Thank you ,

God BLess!

Angela <><

[KaitiUSA]

I have some lists if you need some suggestions on the good brands and safe brands that will not hide anything. I am glad to hear she is doing better. Unfortunately being careful with eating out is always a must for us so I am not sure I can help there. Although, there is some places that are completely gluten free and in those places we can have fun:)

[judy05]

Hello all,

I am new here and have been looking around a little bit. I have a 13 yo daughter, she has not had actual celiac testing but recently had some allergy testing done and tested positively allergic to wheat, rye, barley, corn and a few other things.

I don't know if anyone else has experienced the frustration I have with the medical community but I knew NOTHING about food allergies. My daughter has had health issues since she was a toddler and some things became increasingly worse. She has almost always had really dark circles under her eyes, ADD, severe mood swings, etc- nothing that I knew would be tied to food allergies. I had taken my daughter to several doctors all who either wanted to put her on medication or send her to a psychiatrist. Nothing helped and most of the time I was looked at as if I were exaggerating things or insane myself. I homeschool and had my daughter in school for one year when we moved- we were on the verge of being looked at by child protection because of her problems at school and here severly unhealthy looks. Finally, I became friends with someone who is a nutritionist and suggested to me that she may have food allergies. she suggested we take her off of dairy and see what happens. No results came of this and finally I took her to an allergist and had her tested - after testing positive to a large amount of the foods on the list and everything containing gluten- this doctor suggested no special diet. He said take her off of these foods for a while, then reintroduce them and she should be fine and again medication was suggested! I never heard of gluten intolerance, celiac disease, etc. Just before this my daughter started throwing up- she would have three or four day bouts of not being able to keep anything down. This allergist told me that this and all of the other symptoms I described had nothing to do with her allergies- only the exzema was directly related.

At this point I feel I am hitting a brick wall, getting nowhere and my daughter is getting sicker.

I gave my friend her list and she suggested a gluten free diet- it took a little bit to get understanding and get in the swing of things but she has been on a 100% gluten and corn free diet for a few months now. Everything that was supposed to have nothing to do with food allergies according to the doctors i had seen has cleard up almost completely.

The ADD is GONE!!!! The mood swings are almost nonexistant, her eyes are clear and sparkly, throwing up has stopped (one more issue had to be dealt with for this - I will get to that in a second) she is gaining weight and able to get her schooling done- she is so much more joyful and pleasant - it is amazing!!

For a little while we had troubles with her getting sick in the shower- I did not understand this and the significance of gluten in bath products. She would be fine all day, go to take a shower and get very nauseated and come out with her eyes slightly dark. I never knew this could be a problem. So now we are in the process of becoming a gluten-free household, I find that it is so much easier to prepare all the same meals , ensuring no cross contamination or other problems. We have gotten rid of all of the glutenous bath products (BTW - if anyone has any suggestions about where I can get reasonably priced gluten-free bath products or what brands are the best I would really appreciate it- I often spend too much time reading ingredients and I don't always know what to look for just yet)

Right now my biggest issue is travel and eating out. We do not do this very but on the occasions we do, it has been a challenge. My daughter is getting very frustrated because she feels no matter where we go she can only have a salad. Aside from the gluten, we really have to be careful of corn - corn, corn starch, corn syrup has caused some extreme reactions for her. I am writing from a hotel room right now feeling frustrated and my daughter is a bit upset. We were able to accompany my hubby on a trip w/ his company. Because he would be in class all day, I prepared easy to deal with breakfasts and lunches to carry in our picnic baskeyt and cooler, but last night we went to dinner with him and his coworkers and it was rough - I did not know where we were going, I did not have time to preplan nad I had no clue how to approach the staff and talk to them about our needs. My daughter ends up feeling bad like she is making things difficult for people and I am just not familiar with how to do this at all. We will be going out again tonight and I just want to hide in the hotel room! Aside from this no one at the table had any understanding of why we had to order differently for her. I only have two friends that are familiar with food allergies and their severity and neither one of them is celiac savvy so I am feeling like I am wandering in the dark all the time, and I know that my ignorance and frustration is not helping my daughter to cope any better, though I have to say that aside from eating out - she has an amazing attitude about this and an amazing self control regarding staying away from things that she has eaten all of her life, knowing that it will make her sick.

I am sorry this has been so long. I am looking forward to learning what I can, meeting others who are going through the same things and one day helping others in the same situation I am in now.

Thank you ,

God BLess!

Angela <><

Hi Angela,

So glad your daughter is improving. I've been gluten-free/Cf for 3 years and have noticed much improvement. I still have some issues but I am working on those. I know Dove products are gluten-free and I use Garnier Fructis shampoo. My scalp itched for a long time and I couldn't figure out why until I read the ingredients on my expensive Nexxus shampoo, it contains wheat.

As far as eating out I have had good luck in my hometown. The waitresses call us the "clean the grill couple", all of the waitresses know me and my problem. I usually get a steak or eggs, hash browns, and sometimes coleslaw. When I first started to eat there I made sure their steak wasn't marinated and we insisted that they use clean utensils and "clean the grill" or else use a clean skillet or aluminum foil. I have also read the ingredients in their mayo, ketchup and tea bags. They have been very accomadating. Their french fries are not cooked in a dedicated fryer so i can't eat them. When traveling I have had good luck eating at Outback Steakhouse, Denny's and MacDonalds I all else fails. I have never been contaminated at Macdonalds but I have at Wendys and Burger King. I hope some of this helps you, keep coming to this board, it has been a lifesaver for me.

[wolfie]

SO glad that your daughter is doing better! What a rough road it has been for you all! ((HUGS))

The best investment that I have made has been the Triumph Dining Cards. The are laminated cards that spell out what we can and can't eat for the staff at restaurants. They come in different languages for different cuisines, too! I ordered the book that goes along with it and got both for under $30. I have used the cards twice now and it makes eating out SO much easier! These might be helpful for you if you don't have the option of eating in while traveling.

Here is the link:

Open Original Shared Link

Good luck!

[flagbabyds]

HI and welcome to the board!

I'm 15 and am also corn free because of allergic reactions(anaphalyxis) to corn and was getting really sick. For eating out you can go to www.glutenfreerestaruants.org and they have gluten free restaruant cards to give to the witers so they know what you can have and can't have. For bath products Dove i am pretty sure is all gluten-free and they will label if it contains gluten, so i use all their bath products. FOr eating out I just tell the waiters that i have an allergy so they know that it is more severe than it is so they will take extra caution with my food, sometimes you can ask the chef to come out and they are usually better than the waitresses, just talk to them, and my fall back food is a plain baked potato because that is almost always safe.

if you want her to talk to me about stuff, my e-mail is celiacmolly08@mac.com and AIM is missmolly3001

~molly

Glad she is feeling better!

[TCA]

Ihave a Celiac 101 sheet I did for my son. PM me with your e-mail if you'd like it. As for bath products - Suave, Dove, anything by unilever will list gluten as wheat, rye, barley, or oats. Garnier Fructis is gluten-free too. I applaud your efforts. You are doing a great job and it will get easier. Most restaraunts list gluten-free menus on their websites. PF chang's is great. We don't eat out much, but this is a great resource. Good luck!

[Ursa Major]

Hi Angela, I am glad you found us. You are doing a great job advocating for your daughter, and looking after her. Unfortunately, it will likely always be somewhat frustrating when going out, especially with a severe corn allergy on top of celiac disease. I have stopped going out completely, because I have many more intolerances and can simply not risk it at all.

But seeing the amazing positive change in your daughter must surely be worth it! To see a truly unhealthy child, both physically and mentally be transformed into a beautiful, healthy, happy young girl sounds like watching a true miracle (which it is, I guess).

You might try cooking or baking ahead of time and bringing some of your own food to restaurants. Then, if you can order only salad, it will just round out the meal, rather than being the only thing she can eat. Make sure you get hotel rooms with a fridge and a stove, to be able to do this. It's a little more expensive, but worth it. It makes life so much easier!

[Chako]

Hi! I am new here and I had no idea that shampoos, etc are a source of gluten as well?! Seriously? Omigosh! How do I know if my stuff contains it as I am sure I will not find "gluten" on the package, right?

My 4 year old always has dark circles under his eyes. We do not even see it anymore and whent the GI brought it up last week along with his pallor I told her we are just so used to it. Quite frankly, he looked "healthy" last week.

My son was labelled ADHD and such at JK this year. Due to his constant blowouts of diarrhea and extreme GERD induced vomitting we pulled him from school in December and have only returned him in the last 2 weeks. This was after we had him screened by a psychiatrist to basically find out if we were missing something with him as his behaviour can be awful to deal with. The diagnosis was that he is a delightful and intelligent child but pain management is an issue for him and as he is in such pain he will act out during those times. Once I got that I told the school and they do not ride me about ADHD anymore.