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Melmelsmom

Please Help Me...new To Celiac

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Hello everyone I hope I have found the place that is going to help me get it together again for my daughters sake.

Ok so a run down of how things got started....

I believe it started when my daughter was in 3rd grade and she became very ill running very high temps all the time like 105 and 106. Well she missed about 3 months school because of that and they never really got to the bottom of it and we never had an answer.

So as time has gone by things that were noticed over the years between 3rd grade and now 7th grade were the fact that she complained alot of nausea and stomach pain but mostly nausea all time and she was having these really bad anxiety attacks as I called them because she would freak out and tell me that she felt like she couldn't breath and was going to die. She spent most of her nights curled up in our room because she felt horrible. She has always been on the thinner side and was weighing in at about 82lbs and wearing a size 12 when her sixth grade year ended in June of this year.

During the early part of this year she started becoming more aggitated with her issues as they seemed to become more severe and she started missing days of school again and if she went to school more times than not I would get a call to come and get her. She was on her way to missing 6th grade science camp because of how she was feeling and was crying all the time telling me she felt like she was never going to get better. Her pain and nausea became so severe about a week before science camp that I took her to the ER thinking that maybe she was having problems with her appendix (sp?) well of course nothing came back and after spending about 8 hours at the hospital and her experiencing a pretty severe alllergic reaction to Moriphine (sp?) we were sent home and she decided that she would tough it out and join her class for science camp. Well after that things seemed to tapper off a bit but she still had the nausea daily and was having a very hard time doing any activity because she was always tired.

Well summer started and my once uppity daughter just wanted to lay around all summer and never wanted to get in the pool or have friends over or even go to Disneyland so I just let her as I called it relax all summer until a little over half way through the summer my family started asking me if she was losing weight. So one night I decided to put her on the scale and to my horror she had lost 20lb and was now down to 62lbs after being at 82lbs prior to summer starting.

Well panic set in for me and I really started feeling lost and felt like I was watching my daughter slowly die infront of my eyes and worse than that I had not been able to do anything to help her.

Well back to the DR we went and of course by now her Pedi got very worried and told me the weight loss was not a good sign and the prevacid he had her on for 4 months at this point should have helped and that he was sending her to a GI DR for children and that he no longer believed that the way my daughter was feeling was due to stress from being a good student.....(Thank the Lord he finally believed me)...oh yeah but did have to ask if I thought maybe she could be anorexic? Of course not.

Well at the GI of course he went into all the paper work and trails of it that followed her including every blood test and stool sample under the sun that her pedi had done months before we ended up at his office and it all showed nothing so he said due to the severity of her symptoms and the loss of weight he wanted to do a endoscopy on her asap with biopsy so that was set up and 2 days later we were back for that.

After the endoscopy he came out to talk to me and informed me that he was very surprised at the condition of my daughters insides so to speak as they did not appear normal and she seemed very swollen and had lots of damaged looking areas in her small intestines....so he said we would talk more after the biopsy reports came back and sent us off that day with some sort of RX for her to take for 5 days called carafat (sp?) I believe.

Anyhow we got the call and he informed me that the biopsy showed severe damage to her villi and swollen lymph glands in her intestinal track and this looked like Celiac but he wanted to run the blood test on her to know for sure so he faxed the lab in and then a week later or so another call to tell us to come in and speak to him that my daughter for sure had Celiac and that we need to see some one in regards to her diet over at the childrens hospital.

Ok so that is my long story and so I sent my daughter back to school 3 days after being diagnsed for sure and starting her gluten free diet and it was so hard for me to do as my little girl is so tiny weighing only 62lbs and wearing a size 8 in the kids clothes it is horrible for me everytime I drop her off because I feel like I am dropping her off in a pool full of sharks because she is so tiny and weak.

She was told not to participate in PE by the DR because she is so weak and he wants her to gain some weight and start feeling better before she gets back to do physical activity.

Here is whey I need some help!!!!

My daughter has been gluten free for 6 weeks now and nothings chaged for her she still feels sick all time and she has not gained even a pound.

Am I doing somthing wrong??? I am feeling so sad because I am failing her as a mother and I just want her to be her happy self again.

I just found this site today and I see some of you all talking about shampoo and tooth paste and vitamins......am I harming my daughter by letting her use certain shampoos and tooth pastes or vitamins?????

This is all so overwhelming for me and all this ingredient stuff is starting to get really confusing???

Has anyone every heard of someone with Celiac not responding to the Gluten free diet...oh I should mention that she is also lactose intolerant so she gets none of that as well.

Gosh I hope someone here has some answers for me because this is just so hard and I want her to feel better.

Thanks so much for your time and any responses.

Blessings,

Melmelsmom

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Guest lorlyn

My 10 year old aughter was diagnosed last November and it was overwhelming at first. She just turned 11 last week and has almost been on the diet for a year now. It does take time to get better, my daughter had very little visable damage but she is happy and feeling good again and not sick any more :) She made her own B-Day cake all by herself. The kids at her party as well as the adults loved it. It all has to be done and good health should follow.

Good LUCK

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Might you share what her daily diet is like?

Pretty much anything that might go in her mouth would have to be gluten-free, including vitamins, toothpaste, lipstick, Chapstick, etc. The verdict is probably still out on shampoos and such, but I keep ours gluten-free *just* to be safe. My DD is 10 and was just diagnosed last May so we're still pretty new to this as well.

If I were in your shoes (my DD was never as sick as yours), I would probably revert to only whole foods--fruits, veggies, lean meats, and rice. You pretty much can't go wrong with those unless there is a true allergy to one of those foods. Avoid dairy which is sometimes harsh on newly diagnosed Celiacs also. That way you're not doing a lot of guesswork on what ingredients are and you can take some time and get familiar with the goods and bads of gluten free. It is very challenging at first, and sometimes discouraging, but it will get better once you determine if your daughter has been getting gluten without you even realizing it.

I hope your daughter gets to feeling better soon!

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There is a wonderful book called Kids with Celiac Disease, A Family Guide to Raising Happy Healthy Gluten Free Children by Dana Korn. This book really helped me when my DD was diagnosed a year ago. It will take you through the disease step by step and help you learn how to shop, cope and help your daughter cope as well. It takes a little of the "overwhelming" aspect out of the diagnosis. It will give you some quick meal ideas and also point you in the direction of commonly missed foods with gluten in them, along with so many other things dealing with celiac disease. There are also some gluten free cookbooks out there for kids that help as well.

As stated in another post before, stick to whole foods if your daughter eats them. Fruit veggies, meat, and rice. Check out her shampoo/cond chapstick, makeup, soaps, creams. I have recently done some research and palmolive dish soap will not garuntee gluten free nor will Arm & Hammer laundry soap. However Joy and Dawn are gluten free as well as tide detergent. There are more however these are the brands I use. Here is a very short list on some companies I recently called (last month) when I was on a desperate search for gluten in my daughter's diet. It turns out that Mrs. Butterworth's syrup is not gluten free. Under the ingredient of "natural flavors" they use barley. Since barley is not one of the major allergens it is not listed separately.

http://www.glutenfreeforum.com/index.php?showtopic=37987

Kraft will label their foods clearly. Yoplait is gluten free. Tinkyada is a very good rice pasta. My dd seems to prefer Kinnickinnick brand everything the best. A great contact here is Mightymouth1234. I am sure Lynn will put some good advice for you, she has helped me more than I could ever thank her for!

My biggest advice is read, read, read! The more knowledge you gain the less overwhelmed you will feel. Your email took me back the feelings of frustration and standing in the middle of the market crying cause I had no idea what to buy. There are a lot of lists on the internet and on this forum of safe and unsafe foods. Do research, call companies and find out if they are gluten free. Most will send you lists of their products that are safe. Put together a binder and take it shopping with you until you get your bearings. I annoy everyone in the market cause I stand there with my cell phone and call the 800 numbers on the package and find out before I buy new things. If it says natural flavoring CALL! If someone else tells you it's gluten free... CALL. If it looks gluten free... CALL! You can't be too safe! I learned that lesson with the syrup! It will take a little bit of time for your daughter to heal but she will get there. She has a wonderful mother to take care of her. Hang in there it will get easier! Use this site for support and information, there is another forum on the site specifically for products, that might be a good place to start! Take care and keep us posted!

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There is a huge learning curve. You will need to read a lot of posts on this board. You will need to read a couple of books, like Gluten Free for Dummies, Dangerous Grains & Kids with Celiac Disease by Danna Korn.

You will need to clean out your kitchen & decide if you are going to have a gluten free house. At the very least you cannot cook with wheat flour because it poofs up & gets on everything...

You will need stainless steel pans to cook your daughters food in - not scratched up non stick pans that the gluten can hide in. You will also need to replace wooden spoons, cutting boards...etc etc.

anything that is porous & cam in contact with wheat...

& yes only meat, seafood, veggies, fruits, nuts & seeds, rice & eggs should be the starter diet. Whole foods prepared simply is the best for healing.

good that she is dairy free now as it can also cause damage & prevent healing.

wishing you the best - it is hard at first, but gets much easier after a few months...

also, your daughter needs to eat a lot of mini meals to help her gain weight.

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Hello to the both of you who have replied so far and thank you so much from the bottom of my heart! I am and was feeling very desperate today and have had a couple moments of tears.

This is very hard and I feel like I have been failing and that as a mother and caregiver I should be able to learn this much quicker so my daughter does not have to suffer any longer.

As far as her diet this is what she had yesterday:

Breakfast = Enviro Kids Peanut Butter Panda Puffs (Gluten Free right on the box) with about 8 oz Lactaid milk because she does not get any dairy.

Lunch = Peanut Butter and Jelly Sandwhich with Skippy peanut butter and Knotts Berry Farms seedless red raspberry jam both are Gluten Free....she had it on Gluteno Bread (the corn bread kind)

Also She had 1 of those enviro kids crispy bars some fruit salad (home made and cut in the house) and 2 Peanut butter cookies from a great recipe for gluten free quick cookies for her made with 2 eggs, 1 cup of sugar and 1 cup of peanut butter and mixed all together real well then we add chocolate chips to the dough and chill for 2 hours the roll into balls and bake (they are the best non flour cookies I have ever tasted!) And with her lunch she had a bottle of water.

Dinner = I cooked rice pasta and we had pasta with sauce and a fresh veggie

So this is a sample menu but really like what we have alot of around here. More times than not it is a meat with white rice and a veggie and she always has her cold cereal for breakfast and close to the same lunch for school.

Anyhow let em know what you think about her diet and if I am doing this right so far.

Oh and am I supposed to be using a certain kind of tooth paste or shampoo for her?

Once again thank you all for you help.

Blessings,

Melmelsmom

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My daughter is only 5 so we still use Johnson's Buddies however I recently read here that Paul Mitchell is gluten-free as well as Dove shampoo and conditioner. I am sure that there are others. Crest toothpaste for Kids is Gluten free.

Oral B is not. Make sure that your cutting boards are new, if they are wood or plastic there could be gluten built up from before. If you use a toaster for her bread, make sure it is new as gluten crumbs in your old one can contaminate her bread. Also her jams, peanut butter, butter, anything you stick a knife or spoon in must be her own. If you put a knife that was on wheat bread in the container, the product will have cross contamination. Make sure your mixing bowls for the cookies are glass or metal. You may want to send her to school with a wipe in her bag to clean her eating area or maybe a small place mat. Make sure she washes her hands before eating. We got rid of all our plastic storage containers and went to glass just incase of build up.

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......am I harming my daughter by letting her use certain shampoos and tooth pastes or vitamins?????

No! You are not harming her, although the toothpaste and vitamins may, if they contain gluten. There's a big difference. You are doing everything you can to help her.

Like gfpaperdoll said, there's a learning curve involved here. The more you read, the more you'll learn.

Tip-- with some of the items that you normally wouldn't consider food, like vitamins and toothepaste, etc... It really is essential to contact the company and ask. I had no idea Flintstones vitamins were not gluten-free until I read it on this forum. I had looked at the bottle and they looked ok. But vitamins don't always list what each nutrient is derived from. I was giving my son these vitamins for a full month into his gluten-free diet, until I realized that they are not gluten-free! :(

I related very strongly to what you said about feeling horrible when you drop her off at school. Reading that brought me to tears. I felt this way every single morning last school year when I would take my son to Kindergarten (before we knew he was gluten-intolerant.) He was so sick all the time... But this year is sooooo much better!!! That's the best thing I can tell you. It takes time, but she will begin to feel better, and she will begin to gain weight.

You may already know this, or you may have taken your whole household gluten-free, but...

I see that she is eating gluten-free bread. If you toast it (like most of us do) are you using a dedicated toaster? I have two toasters-- the old one is for wheat bread, and we bought a new one that is strictly for gluten-free bread. This is a must!!! I also keep a kitchen towel draped over the gluten-free toaster, when not in use, so that no stray wheat crumbs can fall in.

Other traps for crumbs:

* microwaves

* wooden or plastic cooking utensils

* strainers/collanders

* kitchen towels/dishcloths/sponges

* cracks in a wooden dining table (I just discovered this one a couple days ago! :o )

* dish drainer

* cafeteria table at school

* Jars of food that are dipped or scooped out- i.e. butter, mayonaise, peanut butter, jelly, etc.

* As someone else mentioned, scratched non-stick pans. Also unglazed stoneware, like a pizza stone. These are made of clay and are very porous.

Another non-food thing to remember, is that many envelopes, stamps, and stickers have gluten in the adhesive. Obviously, you have to lick some of these to use them, and she should not do that!

As for using a certain type of toothpaste and shampoo, there are lots of people here that prefer to use organic gluten-free hygiene items, but there are plenty of mainstream ones that are gluten-free as well. Whatever she's using now needs to be checked; it may be fine.

Even if you're doing everything 100% perfectly, she may still need more time for her body to heal. It sounds like she had a lot of damage when she was diagnosed. Keep reading posts here, keep asking questions. Everyone here will help you!

-Sarah

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Breakfast = Enviro Kids Peanut Butter Panda Puffs (Gluten Free right on the box) with about 8 oz Lactaid milk because she does not get any dairy.

Hi Melmelsmom,

I'd call that lactose-free, but not dairy-free.

Very common for a celiac to have problems w/ casein, the milk protein. (Lactose is the milk sugar)

There are many choices for a milk substitute to put on cereal. I use either an almond milk or a hazelnut milk.

Just don't use a Rice Dream product! There is barley in those and the weasels recently stopped even *listing* it on the pkg, which seems to somehow be legal because it's just barely under the labeling threshold. (That's my understanding anyway)

Oh and am I supposed to be using a certain kind of tooth paste or shampoo for her?

Definitely need to verify the toothpaste is gluten-free. Ppl are mixed on the shampoo requirement, but I say why mess around? No one needs gluten for better hair!

Not sure if it still has gluten, but years ago my Aim toothpaste was the last thing I found glutening me..

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Crest toothpaste for Kids is Gluten free.

Oral B is not.

I thought that Oral B Stages toothpaste (kids') was gluten-free. It's not? :o Where did you discover that?

-Sarah

*Edit- Never mind, I found the posts from earlier this year where you and JennyC and others were talking about it. Uggghh! I had checked the Oral-B website months ago, and it says this:

"Question: Gluten in Stages Toothpaste?

Answer: There is no gluten used in the formulations, nor on the equipment used to produce any Oral B Stages toothpaste product."

That sounds pretty safe. But now I see where people here contacted Oral-B and asked about gluten, and the company says this:

"Thank you for contacting us, in regards to your inquiry, we cannot exclude the possibility that gluten or nuts may be used in the manufacturing of the raw materials, or used as a processing aid." ...Furthermore, they specifically recommend that Celiacs do NOT use their product.

Now, I ask you... if they specifically tell Celiacs not to use the product, then why don't they say that in the FAQ, instead of giving misleading info??? :angry: It's bad enough that they don't just put it on the darn package!

... I've been telling my mom and my husband for weeks now that I suspect Lucas is getting a low-level glutening from somewhere, but was at a loss as to where it could possibly be from. :wacko: I even had a conference with his school teachers about it. Now I know.

And so, melmelsmom- here is a perfect example of why reading labels isn't enough... and apparently researching on the company's own website isn't enough either!

-Sarah

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Hello everyone I hope I have found the place that is going to help me get it together again for my daughters sake.

Ok so a run down of how things got started....

I believe it started when my daughter was in 3rd grade and she became very ill running very high temps all the time like 105 and 106. Well she missed about 3 months school because of that and they never really got to the bottom of it and we never had an answer.

So as time has gone by things that were noticed over the years between 3rd grade and now 7th grade were the fact that she complained alot of nausea and stomach pain but mostly nausea all time and she was having these really bad anxiety attacks as I called them because she would freak out and tell me that she felt like she couldn't breath and was going to die. She spent most of her nights curled up in our room because she felt horrible. She has always been on the thinner side and was weighing in at about 82lbs and wearing a size 12 when her sixth grade year ended in June of this year.

During the early part of this year she started becoming more aggitated with her issues as they seemed to become more severe and she started missing days of school again and if she went to school more times than not I would get a call to come and get her. She was on her way to missing 6th grade science camp because of how she was feeling and was crying all the time telling me she felt like she was never going to get better. Her pain and nausea became so severe about a week before science camp that I took her to the ER thinking that maybe she was having problems with her appendix (sp?) well of course nothing came back and after spending about 8 hours at the hospital and her experiencing a pretty severe alllergic reaction to Moriphine (sp?) we were sent home and she decided that she would tough it out and join her class for science camp. Well after that things seemed to tapper off a bit but she still had the nausea daily and was having a very hard time doing any activity because she was always tired.

Well summer started and my once uppity daughter just wanted to lay around all summer and never wanted to get in the pool or have friends over or even go to Disneyland so I just let her as I called it relax all summer until a little over half way through the summer my family started asking me if she was losing weight. So one night I decided to put her on the scale and to my horror she had lost 20lb and was now down to 62lbs after being at 82lbs prior to summer starting.

Well panic set in for me and I really started feeling lost and felt like I was watching my daughter slowly die infront of my eyes and worse than that I had not been able to do anything to help her.

Well back to the DR we went and of course by now her Pedi got very worried and told me the weight loss was not a good sign and the prevacid he had her on for 4 months at this point should have helped and that he was sending her to a GI DR for children and that he no longer believed that the way my daughter was feeling was due to stress from being a good student.....(Thank the Lord he finally believed me)...oh yeah but did have to ask if I thought maybe she could be anorexic? Of course not.

Well at the GI of course he went into all the paper work and trails of it that followed her including every blood test and stool sample under the sun that her pedi had done months before we ended up at his office and it all showed nothing so he said due to the severity of her symptoms and the loss of weight he wanted to do a endoscopy on her asap with biopsy so that was set up and 2 days later we were back for that.

After the endoscopy he came out to talk to me and informed me that he was very surprised at the condition of my daughters insides so to speak as they did not appear normal and she seemed very swollen and had lots of damaged looking areas in her small intestines....so he said we would talk more after the biopsy reports came back and sent us off that day with some sort of RX for her to take for 5 days called carafat (sp?) I believe.

Anyhow we got the call and he informed me that the biopsy showed severe damage to her villi and swollen lymph glands in her intestinal track and this looked like Celiac but he wanted to run the blood test on her to know for sure so he faxed the lab in and then a week later or so another call to tell us to come in and speak to him that my daughter for sure had Celiac and that we need to see some one in regards to her diet over at the childrens hospital.

Ok so that is my long story and so I sent my daughter back to school 3 days after being diagnsed for sure and starting her gluten free diet and it was so hard for me to do as my little girl is so tiny weighing only 62lbs and wearing a size 8 in the kids clothes it is horrible for me everytime I drop her off because I feel like I am dropping her off in a pool full of sharks because she is so tiny and weak.

She was told not to participate in PE by the DR because she is so weak and he wants her to gain some weight and start feeling better before she gets back to do physical activity.

Here is whey I need some help!!!!

My daughter has been gluten free for 6 weeks now and nothings chaged for her she still feels sick all time and she has not gained even a pound.

Am I doing somthing wrong??? I am feeling so sad because I am failing her as a mother and I just want her to be her happy self again.

I just found this site today and I see some of you all talking about shampoo and tooth paste and vitamins......am I harming my daughter by letting her use certain shampoos and tooth pastes or vitamins?????

This is all so overwhelming for me and all this ingredient stuff is starting to get really confusing???

Has anyone every heard of someone with Celiac not responding to the Gluten free diet...oh I should mention that she is also lactose intolerant so she gets none of that as well.

Gosh I hope someone here has some answers for me because this is just so hard and I want her to feel better.

Thanks so much for your time and any responses.

Blessings,

Melmelsmom

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Your story sounds a bit like ours. My daughter took 6 weeks to feel better and then six months later still has trouble with a lot of foods. She has had 5 surgeries this year on top of the gluten intolerance diagonosis, so we think that the anesthesia has torn up her intestines as well. But the good news is that she seems to be getting better, albeit slowly. After 6 weeks gluten free, the terrible pain she was having completely went away. Now it's nausea and acid reflux that bother her primarily. Check all products for gluten and check with the companies to see what is gluten free and what isn't.

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Also, as suggested to me here, make a safe medication list and have those meds on hand. Many common OTC meds have gluten in them. Speak with your pharmacist about prescriptions as well as many use gluten based starches as fillers.

FYI to those of you who have dairy issues and are taking Prevacid for reflux, last I checked when my son was on it the SoluTabs had trace amounts of dairy in them. Michael would begin gagging in the night and refluxing hardcore when I tried giving those to him.

Also lactose intolerance is different than a dairy allergy. Lactose is the sugars in milk where with a dairy allergy you are actually reacting to the proteins in the milk not the sugars. Michael had a true dairy allergy where in the beginning Katharine was lactose intolerant. (she has outgrown this as some celiacs do once the villi is repaired) If she is LACTOSE intolerant then the lactaid milk is ok, if she has a dairy ALLERGY than it is not since it is still dairy minus the lactose. Also my ped gi told me that straight milk and ice cream has the most lactose but do to processes they go through yogurt and cheese sometimes won't give someone with lactose intolerance a problem which is what I found with Katharine. She would only have bellyaches and gas right after drinking a cup of milk, but if she had a yogurt or cheese for a snack she was fine. This maybe something you will want to talk to your doctor about before you try. It might be better just to stay away from everthing until she is feeling better.

I have been thinking of you... hang in there!

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Hello to the both of you who have replied so far and thank you so much from the bottom of my heart! I am and was feeling very desperate today and have had a couple moments of tears.

This is very hard and I feel like I have been failing and that as a mother and caregiver I should be able to learn this much quicker so my daughter does not have to suffer any longer.

As far as her diet this is what she had yesterday:

Breakfast = Enviro Kids Peanut Butter Panda Puffs (Gluten Free right on the box) with about 8 oz Lactaid milk because she does not get any dairy.

Lunch = Peanut Butter and Jelly Sandwhich with Skippy peanut butter and Knotts Berry Farms seedless red raspberry jam both are Gluten Free....she had it on Gluteno Bread (the corn bread kind)

Also She had 1 of those enviro kids crispy bars some fruit salad (home made and cut in the house) and 2 Peanut butter cookies from a great recipe for gluten free quick cookies for her made with 2 eggs, 1 cup of sugar and 1 cup of peanut butter and mixed all together real well then we add chocolate chips to the dough and chill for 2 hours the roll into balls and bake (they are the best non flour cookies I have ever tasted!) And with her lunch she had a bottle of water.

Dinner = I cooked rice pasta and we had pasta with sauce and a fresh veggie

So this is a sample menu but really like what we have alot of around here. More times than not it is a meat with white rice and a veggie and she always has her cold cereal for breakfast and close to the same lunch for school.

Anyhow let em know what you think about her diet and if I am doing this right so far.

Oh and am I supposed to be using a certain kind of tooth paste or shampoo for her?

Once again thank you all for you help.

Blessings,

Melmelsmom

Her diet seems pretty heavy on wheat-replacements (carbs), and pretty light on protien and fat. A lot of people have found that even gluten-free grains (including corn) are hard on their intestines for the first couple of months of being gluten-free. I totally understand how difficult lunch at school is, but will she eat deli meat, or cold chicken? A couple of slices of deli meat (check on this board and call the companies to make sure your brand is gluten-free) will provide more protein than peanut butter. Also, milk protein (which is found in lactaid) can be hard for celiacs to digest. A lot of people are able to add dairy back in after a few months when their intestines are in better shape.

You may also want to look into finding a gluten-free, dairy-free meal replacement shake. I don't actually know of any off the top of my head, but I'm sure someone on this board may know of something. If she feels self-consious (sp?) drinking that at school, you could probably get permission for her to go to the nurses office right before or after lunch time and drink it there.

Does she have a good appetite? Or is she so sick of feeling sick after she eats that she doesn't want to eat anything? Good luck, and hang in there!

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Everyone has given great advice.

I suggest keeping a food journal. This can help you pin point possible gluten mistakes and identify other foods that may be a problem. Some gluten free foods may be a problem until her tummy heals.

Laura

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i'd recommend you have follow up blood work done-----this can really help to see how well you are doing with the gluten free diet. we check our girls' blood work about every 6 months, but we have done it sooner when the need arose.

if it helps----there have been alot of us that have cried in the early days of diagnosis.

one of my twins is going on her first date next week to the homecoming dance and i keep having to remind myself that she is old enough to take care of her eating arrangements----she hates it when i say too much about it.

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Oh my goodness thank you all so much for the wonderful support! You are all so kind to take the time to respond to me and the advise you have given is wonderful. I am so surprised at how many things I was not thinking of because when we spoke to the dietician (sp?) there are many things that you all arementioning that she never mentioned.

I do how ever have her own toaster for her...I went out and bought the day I got the call and started my intial research and we also bought a whole set of food storage containers just for her and her things.

I can say though that I have been giving her Flinstones vitamins on a daily basis so I took them away right away this morning when I read the post that they have gluten.

Can I ask you all a question??? When does the feeling of being very overwhelmed with all this go away???? Will I ever really learn it all because it seems so complicated? I am hjoping after time this will get better and I will not feel so overwhelmed by this any longer.....so please someone tell me that this feeling goes away and that I will become professional at this.

I love al your advice and I am headed out today to get some books and I have a binder that I will start a guide in and take it with me whenever I go food shopping or any kind of shopping.

You all have no idea how thankful I am for finding you all and for the help you have given me and my family.

I found a home here and will be sticking around....hey maybe years down the line I will be able to give advice to newbees like you all are doing for me and know that I am helping someone as well.

Blessings to you all.

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It will get better. There will always be new information out there but once you get the main stuff down the new stuff won't be quite so overwhelming and it will seem like second nature. You will find your brands that you use and you will be able to shop easily once again. I am a year into it and still sometimes I get a shocker or have a bunch of questions pop up, that's when everyone here is a blessing. Take care and be strong, you can do it! :D:D:D:D

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Hi Melmelsmom,

It plain takes time to heal when you are as sick as your daughter is. I'm sure you are doing nothing wrong. It took me a little over a year to stat to gain any weight and to feel like I was going to live afterall.

Denise

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It is still fairly new to me too, and it is definitely overwhelming. I know I felt better about it when I saw my daughter feeling better--something you haven't accomplished yet--but you'll get there.

It is a tedious process always, but it doesn't seem troublesome at all once you see what a difference it makes. This forum has been so valuable to me I really don't know what I would do without it.

Hang in there and stick around. You are definitely not alone, and neither is your daughter. It takes time but you can do it!

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Hi Mel's Mom,

We were in exactly your shoes in June. My son wasn't nearly as sick as your daughter was, but I knew we had to be really careful about this. My son is 4, so our issues are a little different, but here's what helped us. I think now that you pulled the vitamins, you will see some better results. All Crest and Colgate toothpaste are gluten free.

At home, EVERYBODY eats gluten free. All the time. Once we got the dx, I spent an entire weekend 'hosing' down my kitchen. Everything in the house is always gluten free except for when we get take out after the kids are in bed. But it's not being cooked and the dishes go in the washer and the containers are out with the trash before he wakes up. This way, if I make a mess while trying to churn out dinner, nothing in the house will hurt my son if it touches his food. I always make a big mess when I cook, no matter what I do. This way, this is his safe place to eat. There's nothing in the house that he can't eat. It helps that I love to cook, but most of my old standards have converted really easily.

Handwashing. This is difficult to drill into a 4 year old, but he absolutely has to wash his hands before he eats. People in my area tend to treat the climbing structures at our local parks like a picnic area, so we pretty much assume that there will be gluten on his hands once we've been off our property.

I have been consistently amazed at what microscopic amounts of this stuff can cause a reaction in my son.

And my son was touch and go with this for the first couple of months. Now after 3 months on the diet, he's growing like CRAZY, and he's gained 4 pounds in a month!

So, it sounds like her digestive system has sustained a lot of damage, so give it some time. A lot of people really like to see results after 3-6 months. It sounds like the foods she's eating are just fine. But I would worry about cross contamination if your house is not gluten free.

We thought we would need to pull the dairy when things didn't get better quickly, but the nutritionist said unless he had blood in his stool, it was unlikely that it was a cascien allergy, it was most likely a lactose problem like your daughter. I know a lot of folks on this site pulled dairy, but that may not be part of the problem. I'd do a RAST (this is a blood test that checks for food intolerances) before I'd pull dairy from a kid that needed to gain weight as much as yours does.

Best of luck you and if you need some simple meal ideas, feel free to send me an e-mail with more questions.

Best of luck.

Margaret

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