Stomach Aches Still

[Mother of a Celiac]

Hi, My 6 year old just had her first endoscopy last Friday which reconfirmed, along with her blood test, that she definitely has Celiac. After we got a positive blood test, I had her off of gluten for a week and it was remarkable how much better she felt. Then we had to put her back on gluten for a couple weeks before we did the biopsy and have finally taken her completely off since last Friday, exactly one week ago. She started having stomach pains again on Tuesday, usually in the evenings and mornings. We have been very careful with everything we have given her, even down to the toothpaste, shampoo, lotion, etc. Could this be gas or something from the biopsy procedure or is there usually a period of time where symptoms persist until they get better?

[Lisa]

Often times, it's recommended that you remove dairy for a short period of time, until some healing can take place. Dairy can often mimic symptoms of gluten. It can be re-introduced after a few weeks. Healing is often rapid in young children, with compliance of the diet.

[Roda]

Is she in school? If so, she could be coming in contact with gluten there. Is there any potential for contamination at home?

[dilettantesteph]

With my son, it took a long time to finally eliminate all the gluten in his diet. It is a process. You need to keep educating yourself. Some gluten free items are more gluten free than others. In our case, we needed a gluten free household. My husband kept leaving crumbs everywhere, and they would get to my son somehow. I hope she feels better soon.

[Mother of a Celiac]

With my son, it took a long time to finally eliminate all the gluten in his diet. It is a process. You need to keep educating yourself. Some gluten free items are more gluten free than others. In our case, we needed a gluten free household. My husband kept leaving crumbs everywhere, and they would get to my son somehow. I hope she feels better soon.

I think we are definitely just going to have to have a fully gluten free house. I just don't see how it will be possible to eliminate cross contamination without driving ourselves crazy. I know that she is not getting gluten in anything that I am feeding her at this point. I've become very educated over the past several months about hidden gluten and making sure to check any and all products and food that she is now eating/using. Her biggest symptoms have always been bad itching all over without a rash and stomach aches. Both of which still have not gone away, granted she has only been off permanently for 9 days. The first time we took her off gluten was for a week after her inital blood test and the symptoms did go away. I'm just wondering if it takes awhile for them to go away or if it definitely sounds like a case of cross contamination. I"m not sure how to handle school either. Friday was pizza day, every friday is, and I don't know how to control her environment there. Any suggestions beyond becoming a lunch room monitor and having to supervise it myself? Feeling a little overwhelmed that it could just take a crumb to be symptomatic. Sounds almost impossible to control.

Also, any suggestions on traveling and dealing with restaurants when you HAVE to eat out? We are going away for a week at the beach this summer, which has now become much more complicated. Part of the trip we will have a full kitchen in our room, which is great, but we are staying at a hotel for a couple nights where we will have to eat at the restaurants. Thanks so much.

[Mother of a Celiac]

Often times, it's recommended that you remove dairy for a short period of time, until some healing can take place. Dairy can often mimic symptoms of gluten. It can be re-introduced after a few weeks. Healing is often rapid in young children, with compliance of the diet.

Thank you. Yes, our GI said that she recommended this too. We have taken her off of dairy for now and will wait a few months to see how she is doing.

[Mother of a Celiac]

Is she in school? If so, she could be coming in contact with gluten there. Is there any potential for contamination at home?

It is very possible that she is coming into contact with it at school. Any recommendations on how to handle this diplomatically? It seems like a futile effort almost and I would appreciate any advice on what others have done. Thanks!!

[seezee]

Everyone told me that it takes about six months to a year to heal. My daughter had terrible stomach pain about two months or so after starting the gluten-free diet. It was weird because she hadn't really complained too much before that. Anyways, they xrayed her and she was full of stool. The doctor said this is common. That took a few tries to clear up. They also prescribed prevacid to help her stomach heal and we got some probiotics from the natural foods store that she said really helped.

[dilettantesteph]

You can bring a cooler and a mini microwave or hot plate to use in the hotel. We stopped eating in restaurants after we got tired of getting glutened. Coleman has a cooler that will plug into the car or electrical outlet.

[tfrankenberger]

Symptoms can and will continue until her intestines have healed. It is my understanding that the damage and inflamation in the intestine will keep the person from digesting anything well for a while. As healing progresses, symptoms should get better. This could take a few months.

[tfrankenberger]

We've made a few roadtrips where we had to stay in a hotel for a couple of days. What I did was prepare meals ahead of time that I could warm up in the microwave for us. We only have a family of three, so that may not work for you. We have not eaten out with our Celiac child in a year due to fear of cross contamination. We just do not feel it's worth the risk right now. You could at least prepare meals for her to either eat before you go to a restaurant or warm up at the restaurant and have her eat safely.

[chasing4]

Everyone told me that it takes about six months to a year to heal. My daughter had terrible stomach pain about two months or so after starting the gluten-free diet. It was weird because she hadn't really complained too much before that. Anyways, they xrayed her and she was full of stool. The doctor said this is common. That took a few tries to clear up. They also prescribed prevacid to help her stomach heal and we got some probiotics from the natural foods store that she said really helped.

My daughter went through the same thing. After she was diagnosed she had worse stomach pains than before, and sometimes had to keep her home from school.

You can bring a cooler and a mini microwave or hot plate to use in the hotel. We stopped eating in restaurants after we got tired of getting glutened. Coleman has a cooler that will plug into the car or electrical outlet.

When we go on trips, we bring that same cooler filled with fruits and veggies and food to cook in the hotel. When we book a room, we always make sure there is a fridge and a microwave in our room.

[srsssss]

I am also still having stomach cramps after 5 months of being gluten free. I just saw a celiac Dr last week and he told me it's not uncommon to have temporary allergies to common foods like lactose (which I stopped eating 4 months ago)

soy, peanut butter and maybe a few other things. He told me to eliminate them for a month and slowly reintroduce them one at a time.

I seem to react to maltodextrin and MSG badly. Even if the MSG is made from corn I react to it. I never drink soda because I think there is something in the dark sodas (root beer) possibly the carmel color even though it's supposed to be made from sugar in the US.

I also cannot use any personal hygine products containing gluten.

I have the same reaction after eating something suspect, I start itching. I have DH as well though. In the last month it is almost like I have had a relapse and my stomach really hurts and I broke out in blisters everywhere. I'm pretty sure I didn't eat anything.

When I go anywhere, I bring Larabars, boost, rice noodles and any fruits and veggies I can eat. Depends what area of the country you are in but there are some areas where there are more gluten-free restaurants than others.

[Mother of a Celiac]

Thanks everyone for all the responses. Her stomach aches have gotten better, however, she is constipated a lot now. She never had this problem before going gluten-free. Any suggestions for this and/or has anyone else had this problem? We have taken her off dairy too, for the meantime. Do most use Probiotics? I have some that we used to give her in the fridge and have just gotten lazy about it, but will reintroduce if most think this is helpful and necessary. If you are using them, how much a day do you give your child? We have a 6 year old.

As far as traveling goes, I think I might cancel the part of our vacation where we are staying in a hotel room. I'm pretty sure that they do not offer microwaves in the rooms, even though it is a very nice resort. Probably because they want you to use their restaurants. Just don't want to deal with cross-contamination while on vacation. We ate lunch out today and didn't find out until it was too late that the corn chip she was eating was not actually gluten-free...so frustrating. The poor thing has been itching all night now and has a headache. Overall though, she has been doing much better.

[ChrisG]

My son was diagnosed at 21 months and was VERY ILL. I remember it was about 2 months of being gluten-free until his symptoms totally went away. He was lactose intolerant so had him on milk without lactose for 1 year, however, cheese didn't bother him. He is now 9 and is in the 100% for height and weight. We have been very lucky, however, because he has no other food allergies. A ton of environmental allergies though.

We eat out quite a lot but we have certain restaurants we go to all the time. Remember always to ask if they have a dedicated fryer for chips and/or fries (if you check the label). Remember that Mexican restaurants use chicken soup base in the rice. Some bases are gluten free and others are not. Make them show you the product.

When traveling I bring along a combination toaster/convection oven as well as a fryer that also boils water. That way we can always do gluten-free pizza and mac and cheese.

I hope your child feels better soon. I know it is hard but it does get easier.

[ChrisG]

Oh and about school...at the beginning of every year I type a letter from my "son" saying he has Celiac. The letter explains what Celiac is and how having any gluten can hurt him very bad. In it he asks all the parents to please call his mom and let her know if they are going to bring in any goodies so his mom can bring something for him so he doesn't feel left out. This has worked great for us. I keep gluten-free cupcakes in the freezer so he can grab one for school if they are having a party or anything. I also have meetings with the school administration and I have found if you tell them 1 in 7 Celiacs that don't follow the diet may develop intestinal cancer...they really get the message. (Those are the last stats I've read, however, that was awhile ago).