Mom Of Celiac

[genicol]

Hi all. My name is Gail, and I am a mom of a 20 month old daughter who possibly has Celiac Disease. She had a blood test show up positive and we go in the morning for an upper endoscopy. I feel like I'm going crazy! Since I received the blood results, I've been trying extremely hard to watch what she eats, and I am seeing some improvement, but feeding her is extremely difficult. She is a very picky eater anyways, and not old enough to understand that she can't have the things that she wants! She loved Cheerios and wheat crakers, which I know was causing a lot of her problems to begin with. Since she was born, she was difficult to feed. She did not like her bottles, and when we went to table food, her eating habits quickly spiraled downhill!

Does anyone have any suggestions on feeding a Celiac toddler? She does like many fresh fruits and veggies, but too many of them and they go right through her...so I try to limit those throughout the day. (I'm really tired of changing dirty diapers !!!

Any suggestions would be greatly appreciated!! Thanks, and I look forward to chating in the future!

[CarlaB]

What about some rice mac and cheese? Does she like meat? You can probably find some rice crackers to replace the wheat ones she used to like. Also, it's sugary, but Coco Puffs (check the label, they've just changed the recipe and the old ones are not gluten-free), and both kinds of Pebbles are gluten-free. She also can have potatoes ... french fries, too, but read the labels and be sure your oil is not contaminated by previously cooking something with gluten. I use corn tortillas for "sandwiches." My daughter will even use them with peanut butter and jelly (be sure they've not been contaminated by people putting a knife in them that had touched bread).

[genicol]

What about some rice mac and cheese? Does she like meat? You can probably find some rice crackers to replace the wheat ones she used to like. Also, it's sugary, but Coco Puffs (check the label, they've just changed the recipe and the old ones are not gluten-free), and both kinds of Pebbles are gluten-free. She also can have potatoes ... french fries, too, but read the labels and be sure your oil is not contaminated by previously cooking something with gluten. I use corn tortillas for "sandwiches." My daughter will even use them with peanut butter and jelly (be sure they've not been contaminated by people putting a knife in them that had touched bread).

Thanks for the tips. French fries are a very common food for her, but I feel bad giving her fries all the time. She also likes baked and mashed potatoes. I haven't tried rice crackers simply because I didn't know that there was such a thing. Like I said, this is new, and we aren't 100% positive, but we will know after tomorrow. I'll keep you posted on the results of the endoscopy! Thanks! Gail

[CarlaB]

Thanks for the tips. French fries are a very common food for her, but I feel bad giving her fries all the time. She also likes baked and mashed potatoes. I haven't tried rice crackers simply because I didn't know that there was such a thing. Like I said, this is new, and we aren't 100% positive, but we will know after tomorrow. I'll keep you posted on the results of the endoscopy! Thanks! Gail

You might try a health food store and ask someone to show you around a bit. There are lots of cookies, crackers, etc. It's best to just eat things that are naturally gluten-free, like meat, fish, potatoes, veggies, fruit, but kids expect more.

Was her tTg positive? Did she have the full celiac panel? The biopsy can rule in celiac, but can't rule it out. Damage can be spotty, and they can miss it. My results came out "negative" and I'm very sensitive to gluten. I used charcoal last Sunday night, who would have known charcoal has gluten??? Anyway, was sick all morning Monday just from that. That was a minor reaction for me, usually it's 5 days, and this was just from the charcoal residue on my chicken. So, really pay attention to her dietary response, it's the best indicator. Most of us here believe if the blood test is positive, you've got it and just got lucky that you caught it before damage was done. If she's having an autoimmune reaction --tTg -- my understanding is that eventually there will be some kind of damage. If she had just a positive Iga, then she is reacting to the gluten, but her immune system is not attacking her intestine. It would still make her ill and give her celiac symptoms. There are others on the board who can explain this and perhaps understand this better than I do ...

[skipper30]

CarlaB.....OH MY.... I had no idea about charcoal!!! What brand did you use?? Do you or does andybody know of a gluten-free brand?!

[genicol]

You might try a health food store and ask someone to show you around a bit. There are lots of cookies, crackers, etc. It's best to just eat things that are naturally gluten-free, like meat, fish, potatoes, veggies, fruit, but kids expect more.

Was her tTg positive? Did she have the full celiac panel? The biopsy can rule in celiac, but can't rule it out. Damage can be spotty, and they can miss it. My results came out "negative" and I'm very sensitive to gluten. I used charcoal last Sunday night, who would have known charcoal has gluten??? Anyway, was sick all morning Monday just from that. That was a minor reaction for me, usually it's 5 days, and this was just from the charcoal residue on my chicken. So, really pay attention to her dietary response, it's the best indicator. Most of us here believe if the blood test is positive, you've got it and just got lucky that you caught it before damage was done. If she's having an autoimmune reaction --tTg -- my understanding is that eventually there will be some kind of damage. If she had just a positive Iga, then she is reacting to the gluten, but her immune system is not attacking her intestine. It would still make her ill and give her celiac symptoms. There are others on the board who can explain this and perhaps understand this better than I do ...

I'm not sure about the tTg. Actually, I don't even know what that is. It all has been so strange how everything has happened. I actually took her to the dr. thinking that she was showing signs of hyperactivity, and that was what I was thinkng was keeping her from gaining weight. She is always on the move. Her pediatrician wanted her to be checked by a GI doctor, so she sent us to Children's Hospital. My first impression of the dr. was not a good one. He made me feel that I was a terrible mom because of the foods that I fed my daughter. Anyways, he ordered a bunch of blood test, wanted stool and urine samples tested, and also a sweat test. I got a call about a week later and was told that I needed to schedule the endoscopy. I had no clue anything came back positive. The lady who called me wasn't sure of anything. She said that the dr. was getting ready to go on vacation, and had a note to call me to scedule the procedure. She had to pull my daughter's chart, because she didn't have any of the results in front of her. Anyways..long story short, blood test was positive for celiac, so endoscopy scheduled for in the morning. My personal feeling is if the blood test was positive, chances are she has it. I will, however, get the results of her blood work tomorrow, and let you know. Until then, I'm going to take it day by day until I can figure out the best things for her! The hardest part is, she is so picky with her food! It's going to be the biggest challenge I have ever faced! Thanks

[CarlaB]

CarlaB.....OH MY.... I had no idea about charcoal!!! What brand did you use?? Do you or does andybody know of a gluten-free brand?!

There is another thread on this -- you can search in the products forum. Basically, you need to buy natural charcoal.

I'm not sure about the tTg. Actually, I don't even know what that is. It all has been so strange how everything has happened. I actually took her to the dr. thinking that she was showing signs of hyperactivity, and that was what I was thinkng was keeping her from gaining weight. She is always on the move. Her pediatrician wanted her to be checked by a GI doctor, so she sent us to Children's Hospital. My first impression of the dr. was not a good one. He made me feel that I was a terrible mom because of the foods that I fed my daughter. Anyways, he ordered a bunch of blood test, wanted stool and urine samples tested, and also a sweat test. I got a call about a week later and was told that I needed to schedule the endoscopy. I had no clue anything came back positive. The lady who called me wasn't sure of anything. She said that the dr. was getting ready to go on vacation, and had a note to call me to scedule the procedure. She had to pull my daughter's chart, because she didn't have any of the results in front of her. Anyways..long story short, blood test was positive for celiac, so endoscopy scheduled for in the morning. My personal feeling is if the blood test was positive, chances are she has it. I will, however, get the results of her blood work tomorrow, and let you know. Until then, I'm going to take it day by day until I can figure out the best things for her! The hardest part is, she is so picky with her food! It's going to be the biggest challenge I have ever faced! Thanks

It is a challenge for any age! You will learn a lot around here.

[genicol]

Well here's the update. Carrigan had the endoscopy this morning. It was the most horrible thing I have ever had to have my child go through!!! Quick summary....idiot nurse couldn't get the IV in. Two tries in right hand with the result of busting her vein. Moved to the left hand and used smaller needle. The whole time she is completely wrapped tight in a sheet while her dad and I have to physically hold her down. They wouldn't allow me to hold her while they got the IV started. After that, the dr. came in, explained things, and I made the comment that I understood celiac and gluten more now after researching the internet and that I had eliminated as much gluten as I could, he basically said he couldn't do the procedure because she had been w/o gluten. He was not happy at all!!! Apparently I was not supposed to feed her differently, they just forgot to tell me that. Anyways, I became very upset, ordered the IV be removed because I wasn't going to put her through any more! Let's just say, my emotions were getting the best of me, and the tears and words were flying!!!

I just couldn't understand the dr and the nurses. They made me feel horrible the first time I was there becuase of what my daughter was eating, so I changed her diet, and I'm still doing the wrong thing. I just didn't understand! They were so unprofessional and clueless, I couldn't believe it. (FYI - the nurse the first time told me all the wrong things about collecting the stool samples!)

In the end, I bit my tongue, went against my gut feelings, and had the procedure done just so I could get the help from the nutritionist at the hosp. After that, we went to Whold Foods Market and found numerous gluten-free foods for her...and the best part is that she actually really liked what she has eaten so far.

I want to end by saying that this website is a blessing to me!!! I am so happy that I stumbled across it. It helps tremendously knowing that we are not alone and there are so many of you out there that have been through it! I thank each and every one of you! I'll keep you updated on Carrigan. We should have the biopsy results on Wednesday! Take care...and God Bless!

[eKatherine]

To what extent and for how long was your daughter gluten-free? From what you've been saying it sounds like you're still working out the particulars of a gluten-free diet.

Sometimes they get really upset when people take the initiative and try to improve their lives. They think if they keep you in the dark you'll stay the course.

[TCA]

Sorry you had such a bad experience. I think most of us have been there, done that. Usually nutritionists aren't that much help, but not always. Mine handed me a description of celiac disease and said good luck. Don't be discouraged if the biopsy is negative. My son had similar symptoms until 3, but had 2 negative biopsies. By readingon this site I learned that biopsies are often negative in kids under 5. We tried the diet and he is a different child. No longer hyper, just active, gaining weight, no D, no sores on his toungue, growing, and eating a lot more foods. I have a list of foods for people who keep him if you would like it. Just PM me your e-mail address. There is a thread at Open Original Shared Link that will be helpful in getting started too. Good luck and welcome!

[genicol]

The results are in. The dr. called me today and the biopsies were positive. I knew that was going to be the outcome, but just hearing it was hard. Anyways, Carrigan has been completely gluten free for 2 days now, and we are all on our way to having a healthier and happier toddler! Our next step is the celiac nutritionist, and a follow-up at the GI clinic in 3 or 4 months for a recheck. Other than that...we are on our own!

I'm sure I will become a very faithful visitor to this site, and will seek advice from all of you...the true celiac experts! No one knows this disease better than you! Thanks!!!

[kbtoyssni]

Sorry you had such a bad experience with the doctor. Don't take it personally, though, you were just doing what was best for your child. You can get gluten-free cherios that taste great. I can't remember a brand name off the top, but I'm sure most health food/gluten-free stores have a version of them. Have you found a good gluten-free store yet?

[TCA]

Sorry she has it, but at least you know what you're fighting now!!! good luck in getting started and YEA for the positive attitude!

[genicol]

Sorry you had such a bad experience with the doctor. Don't take it personally, though, you were just doing what was best for your child. You can get gluten-free cherios that taste great. I can't remember a brand name off the top, but I'm sure most health food/gluten-free stores have a version of them. Have you found a good gluten-free store yet?

Yes. About 20 minutes from here is a organic store called Whole Foods Market. We went there yesterday, and we were given a brochure that listed all of their gluten free items. So far she likes almost everything. Not too keen on the rice mac & cheese, but it's all trial and error for now. At our local Kroger they have an organic section, and have some gluten free foods. I haven't been there to look yet, but my dad was telling me about it. Good old grandpa...he has already bought her some snacks!

Other than that, there are no too many places close to where I live where I can find food for her. There is another store, The Raisin Rack, and they have a lot of gluten free foods, but it is almost an hour drive. It's worth the trip, and we will be heading there this weekend.

[FreeTime]

genicol-I saw you mentioned Rasin Rack so I am assuming that you are near Akron or Columbus. RR is right next to where I work and I get all of our gluten-free food there. It is much cheaper than Whole Foods and they have things that my 6 year old loves. Even donuts!! The individual pizza crust is great. Also try the "light" Energx bread. It is not heavy and appears more like sliced bread. If you haven't been to Raisin Rack yet, make sure you get the shoppers card as you will get a small discount on everything you buy. They have an aisle dedicated to gluten-free, it is not hidden all over the store like Whole Foods.

Our Dr. at Children's is great (even though I have trouble understanding him sometimes . PM your dr name and if we don't have the same one, maybe you can see ours.

We are new to the gluten-free diet also and I just found these boards. I am learning something new everyday. It will get better, trust me. Even our other child is saying things like, "can I have a gluten free birthday cake?" It tastes better!

[Matilda]

..

[genicol]

genicol-I saw you mentioned Rasin Rack so I am assuming that you are near Akron or Columbus. RR is right next to where I work and I get all of our gluten-free food there. It is much cheaper than Whole Foods and they have things that my 6 year old loves. Even donuts!! The individual pizza crust is great. Also try the "light" Energx bread. It is not heavy and appears more like sliced bread. If you haven't been to Raisin Rack yet, make sure you get the shoppers card as you will get a small discount on everything you buy. They have an aisle dedicated to gluten-free, it is not hidden all over the store like Whole Foods.

Our Dr. at Children's is great (even though I have trouble understanding him sometimes . PM your dr name and if we don't have the same one, maybe you can see ours.

We are new to the gluten-free diet also and I just found these boards. I am learning something new everyday. It will get better, trust me. Even our other child is saying things like, "can I have a gluten free birthday cake?" It tastes better!

I'm very close to Columbus. I live in Marysville. I'm not exactly sure where the RR is though. I was told by a guy working at Whole Foods to go there. There used to be one years ago at New Market Mall in Dublin, but I don't think that it is still there. If you could tell me where it is located, I would greatly appreciate it!! The only reason we went to Whole Foods was because it is close for us.

As for her dr. He is infact at Children's Hosp. His name is Dr. Erdman. I do have to say that after my extremely misserable situation there, he did call me personally with the biopsy results, and was extremely fast at getting them to us. The procedure was Thursday and he told me that he would call me Monday, but he had the results the very next day. I think that after I threw a huge fit in the procedure room, he had pathology rush to get the results to us quickly! I will give him credit for that.

I do have a quick question for you. Have you and your child gone to the Celiac nutritionist at Children's? If you have, I was wondering what that was like. I've heard good and bad things about it. That is our next step, and I wasn't sure what to expect.

I will keep you posted!

[FreeTime]

Our Dr is Dr Delorenzo. We did see the nutritionist at Children's. Just make sure before you go that they know why you are going. We went for our appointment and they said they have one gluten free specialist and that she was off that day. When we went back she gave us books, food, brochures, and said that we can e-mail/call anytime for free advice. Rasin Rack is on Schrock Rd. between State St (route 3) and Cleveland Ave. They are open on weekends. It is a small store, and smells funny (I think it is all of the good for you stuff ) and they are eventually opening a new store across the street. Also, Kroger has a few items in their Nature area if you are in a rush. I went there this afternoon and the gluten free area was packed! It is very popular. Some things to try that our kids like: Character pasta (the Kraft M&C powder is gluten free and you can buy in a can at Kroger), Mi-Del sandwich cookies (they are like Oreos), Panda Puffs (cereal) all Perky O's flavors (cereal), Nut thin crackers-cheddar, chocolate chip muffin mix, the frozen hamburger and hotdog buns by Kinnikinik (don't by Stan's-they are terrible), Kinnikinik personal size pizza crust, Chebe cheese bread (I've only tried the mix, but there is premade in the frozen area), Ian's fish sticks, Welshire Farms dino nuggets.

Enjoy shopping!!!!

BTW-I find that it has been harder for me to adjust to the diet than my daughter. And I am not gluten free. You child is young enough and it should be an easy adjustment for her. Everything will turn out fine.

[genicol]

Our Dr is Dr Delorenzo. We did see the nutritionist at Children's. Just make sure before you go that they know why you are going. We went for our appointment and they said they have one gluten free specialist and that she was off that day. When we went back she gave us books, food, brochures, and said that we can e-mail/call anytime for free advice. Rasin Rack is on Schrock Rd. between State St (route 3) and Cleveland Ave. They are open on weekends. It is a small store, and smells funny (I think it is all of the good for you stuff ) and they are eventually opening a new store across the street. Also, Kroger has a few items in their Nature area if you are in a rush. I went there this afternoon and the gluten free area was packed! It is very popular. Some things to try that our kids like: Character pasta (the Kraft M&C powder is gluten free and you can buy in a can at Kroger), Mi-Del sandwich cookies (they are like Oreos), Panda Puffs (cereal) all Perky O's flavors (cereal), Nut thin crackers-cheddar, chocolate chip muffin mix, the frozen hamburger and hotdog buns by Kinnikinik (don't by Stan's-they are terrible), Kinnikinik personal size pizza crust, Chebe cheese bread (I've only tried the mix, but there is premade in the frozen area), Ian's fish sticks, Welshire Farms dino nuggets.

Enjoy shopping!!!!

BTW-I find that it has been harder for me to adjust to the diet than my daughter. And I am not gluten free. You child is young enough and it should be an easy adjustment for her. Everything will turn out fine.

Thank you for all of the info. We saw the nutritionist at Children's yesterday. Her name is Mary Kay Sharrette, and she overwhelmed me with a lot of valuable information! I haven't been to the RR yet, but we are going tomorrow!

I wanted to ask you if you go to any of the Gluten Free Gang's meetigs and conferences at Children's. If you do or have gone, was it worth it? I know that there is a "basic" meeting on Monday, and didn't know if I should go. Mary Kay talked like it would be just like what she told me yesterday, so I didn't know if it was worth the time or money. Let me know! Thanks again!