What To Do For Pain? Please Help!

[Virgie]

Hi! My 13 year old daughter tested positive for Celiac through bloodwork but we can't get in to the Ped GI until the 29th. The nurse told us not to go Gluten free yet because it could change the outlook of tests that she is scheduled for. What I want to know is what can we do NOW about the stomach pain she is having. She feels better after she goes to the bathroom but her stomach seems to bother her almost constantly. I don't know what to do for her. Does Tums, rolaids, pepto, help with this pain at all. I am used to dealing with her brother Ulcerative Colitis problems but this seems to be a whole different ballgame.

Please help.

Thanks.

Virgie

[Lisa]

Mylanta works well for me with bloating.

I know it's hard to see our children in pain. You already have a diagnosis. Some accept that and go gluten free immediately. Other, would like to continue with and endocopy exam. It is always a personal choice.

I hope that your time passes quickly without a lot of pain for your daughter.

Lisa

PS: I would not recommend Tums.

[heather larson]

We found a "Homeopathic Medicine" called Carbo Vegetabilis. You can find them at most Health food stores. You can also by books that explain better what they are. Essentially it is a sugar pill that your child chews - we call them "crunchies" - the pill itself is not a medicine but what the pill has is an imprint of an herb/medicine that supposedly awakens your bodies natural ability to heal itself. With that said I don't know how much of this is fact. With that said I have a 2-1/2 year old son that we are in the process of getting diagnosed and the blood panel came back negative. We have been dealing with the bloating pain since he stopped breast feeding at 6 months and this particular item is the first thing we have seen really work, other than diet of course.

We give my son 1-2 pills in the morning and 2-3 pills at night. If he eats something questionable during the day we give him a pill. At night if he seems particularly fussy we give him 3 pills and follow up in the morning with 2 pills. Like I said I don't know how much I believed when we first got this but I do now - it worked.

A book we have says licorice works and my daughter used "Hylands Gas Tablets" for 2 years with great success but her symptoms were nowhere near as severe as my sons are. Hope this helps.

[BettyL.]

Mylanta works well for me with bloating.

I know it's hard to see our children in pain. You already have a diagnosis. Some accept that and go gluten free immediately. Other, would like to continue with and endocopy exam. It is always a personal choice.

I hope that your time passes quickly without a lot of pain for your daughter.

Lisa

PS: I would not recommend Tums.

Mylanta has gluten in it; I learned the hard way by taking it years ago and was sick all summer with upset stomach. I used Arthritis Tylenol; which is gluten-free. It has worked for me for a number of years; but I would used just Tylenol for a 13 year old.

[Virgie]

Thanks everyone ! I know I have alot to learn about this. I didn't know that Mylanta had gluten in it too!! Like I said -lots to learn!

Thank you all again. I appreciate it.

Virgie

[par18]

Who gave your daughter a positive diagnosis for Celiac through bloodwork? What other tests are going to be run?

Tom

[Virgie]

We are doctoring through the Mayo Clinic in Minnesota. My son already has a Ped GI there so just decided to go there again. They plan to do an endoscopy on the 30th. Otherwise I'm not sure what else they are going to do.

Virgie

Who gave your daughter a positive diagnosis for Celiac through bloodwork? What other tests are going to be run?

Tom

[par18]

We are doctoring through the Mayo Clinic in Minnesota. My son already has a Ped GI there so just decided to go there again. They plan to do an endoscopy on the 30th. Otherwise I'm not sure what else they are going to do.

Virgie

I understand. The Mayo clinic is a pretty major resource. It's too bad you have to wait another 2 weeks to start what will probably be the relief for your daughter and that is the gluten-free diet. Anyway good luck. When I got diagnosed a couple of years ago via biopsy the doctor who performed the scope procedure said nothing after the endoscopy. I had no bloodwork done prior to the endoscopy. This GI doctor was not the same one who saw me a couple of days before. (Had to wait an additonal 5 days for lab results before positive diagnosis). I ended up eating gluten those 5 days before being notified that the problem was Celiac. I did notice after reading the result of my first and only visit to the GI's office that one of the three things he suspected was "sprue". This was indicated on his new patient examination form. That at least let me know now he was initally looking in the right direction. Also the performing doctor did a good job of taking the biopsy. I really have no complaints with the process in my case. From the first GI visit to the positive diagnosis was only 7 days!

The biggest change I would make with the doctors and the diet would be for some documentation being made available to the new patient which could give him/her some direction for at least the first couple of days. (I would venture to say most GI doctors are "not" Celiac patients themselves so they would not have much if any knowledge of what constitutes a true gluten-free diet). Something like a sample diet which took into consideration things like dairy or for those with computers a couple of websites to start with. I was basically told the diagnosis over the phone and to start this diet. I had to make the appointment with the RD myself. I was given a name. (This turned out to be a good resource). The bottom line though was in effect a "sink or swin" situation. It was however a heck of an incentive to educate myself quickly and get compliant asap.

Tom

[Virgie]

Yes I just love all the hassle of doctors sometimes. We are supposed to talk to a nutrionist at Mayo so I hope we do. There seems to be so much to learn about this. I have bought the book "Kids with Celiac Disease" by Donna Korn which seems really quite helpful.

I contacted Mayo because my daughter seemed to be having symptoms like my son (he has Ulcerative Colitis) & asked what we should be doing to get a quicker diagnosis then what my son had (it took about 3 1/2 months). They suggested bloodwork done locally and I did mention if she should get tested for Celiac. And on my daughters 13th birthday the nurse called me and said that she did test positive and that we should make an at appt. at Mayo. We maybe could have gotten in a little sooner but I needed an appt. for both kids and it didn't work to get them both in at the same time until then. We live almost 3 hours away from Mayo so to take off extra time from work gets hard. So it was nice to get both kids in on the same day. Especially since I know my sons appt. will probably only take `15 minutes. They have really great doctors there & the nurses are very informative. I'm sure the nurse will give me lots of info on Celiac. Nurse S is really really good about giving info. I have been on the phone with her for about 45 minutes as she has explained things about my son.

I'm getting anxious about it all and wish we were done with the appt. I wonder how it will all go at school for lunch. I'm sure I will need to pack a lunch often. Lots to learn. Overwelming at times.

Thanks for your input !

Virgie

I understand. The Mayo clinic is a pretty major resource. It's too bad you have to wait another 2 weeks to start what will probably be the relief for your daughter and that is the gluten-free diet. Anyway good luck. When I got diagnosed a couple of years ago via biopsy the doctor who performed the scope procedure said nothing after the endoscopy. I had no bloodwork done prior to the endoscopy. This GI doctor was not the same one who saw me a couple of days before. (Had to wait an additonal 5 days for lab results before positive diagnosis). I ended up eating gluten those 5 days before being notified that the problem was Celiac. I did notice after reading the result of my first and only visit to the GI's office that one of the three things he suspected was "sprue". This was indicated on his new patient examination form. That at least let me know now he was initally looking in the right direction. Also the performing doctor did a good job of taking the biopsy. I really have no complaints with the process in my case. From the first GI visit to the positive diagnosis was only 7 days!

The biggest change I would make with the doctors and the diet would be for some documentation being made available to the new patient which could give him/her some direction for at least the first couple of days. (I would venture to say most GI doctors are "not" Celiac patients themselves so they would not have much if any knowledge of what constitutes a true gluten-free diet). Something like a sample diet which took into consideration things like dairy or for those with computers a couple of websites to start with. I was basically told the diagnosis over the phone and to start this diet. I had to make the appointment with the RD myself. I was given a name. (This turned out to be a good resource). The bottom line though was in effect a "sink or swin" situation. It was however a heck of an incentive to educate myself quickly and get compliant asap.

Tom

[Lisa]

Mylanta has gluten in it; I learned the hard way by taking it years ago and was sick all summer with upset stomach. I used Arthritis Tylenol; which is gluten-free. It has worked for me for a number of years; but I would used just Tylenol for a 13 year old.

I have contacted the company and will post a response regarding the "gluten" status of Mylanta.

[Lisa]

The following McNeil Products have been tested and do not contain detectable levels of gluten:

Children's Mylanta Tablets Bubblegum

Regualr Strength Mylanta Liquid Original Flavor

Maximum Strength Mylanta Liquid Original Flavor

Mylanta Ultra Tablets Cool Mint

[Virgie]

Thanks for checking into that. Much appreciated.

Stay Cool. It's been hot here.

Virgie

The following McNeil Products have been tested and do not contain detectable levels of gluten:

Children's Mylanta Tablets Bubblegum

Regualr Strength Mylanta Liquid Original Flavor

Maximum Strength Mylanta Liquid Original Flavor

Mylanta Ultra Tablets Cool Mint

[PattiD2]

My heart goes out to you! There is nothing worse than seeing your child in pain, but knowing that you can't fix it for them. Hopefully, you will get a quick diagnosis and resolution of her problems. The gluten-free diet is tough in the beginning, but it does get easier as you do it. There is also a growing awareness of celiac disease and gluten free food so I think in the next couple of years, things will continue to improve both in cross contamination issues and availability of choices.

If your daughter needs someone to talk to, feel free to send me her email and I will give it to my daughter. My DD missed about a third of the days at school last winter due to stomach pains and allergic reactions. For my daughter, this has been a very tough thing to handle at this age - she just wants to be normal and fit in with her friends. Since she has been having a hard time with her friends at school, she has found it helpful to talk to others through email or bulletin boards going through the same thing.

My daughter was (tentatively) diagnosed with Celiac disease in May. She was diagnosed with eosinophilic esophagitis (EE) in April, which was diagnosed via endoscopy and biopsies. When her stomach pain did not resolve while being treated with an elimination diet and prednisone for EE, they ran Celiac blood tests that came back positive, 9 with 1-7 normal. Based on the positive blood test, they reviewed the previous slides and found lymphocytes which can be associated with celiac disease but it was not a conclusive diagnosis. She had endoscopy/colonoscopy last week to check on both celiac and eosinophils. The eosinophils can be found in any part of the gastro-intestinal tract so we felt it important to check for that in her colon and duodenum. Everything looked normal except for her esophagus, which was just as bad as last time. Her celiac biopsies came back normal and her blood test is back in a normal (2.5) range. Her tentative diagnosis was said to be probable but definitive diagnosis of celiac disease.

It took over four weeks on gluten-free diet to see improvement in the stomach pain. I think part of this was due to our inability to find all sources of gluten although there may be other issues with the eosinophils as well. She never knowingly ate gluten but there were a few things that I just totally blanked out on checking. She was getting a chocolate, raspberry shake from Culvers so she knew that she had to substitute chocolate custard instead of vanilla with chocolate sauce because the choc. sauce had gluten. I never thought to check the raspberries but when we did, we found out they had gluten in them. It explained the stomach aches after the shakes. DD was glad it was the raspberries and not ice cream in general causing the problem:) She feels ok now but tires easily and continues to have some stomach pain and a host of other autoimmune issues. Her doctor suggested that in the future, we might want to do a gluten challenge and scope to further evaluate the diagnosis. My daughter (and myself) are opposed to this because I can't imagine putting her in pain for several months just to prove that it is bothering her. I am trying to encourage her to eat one item with gluten so we can identify the type of reaction she will have to help us sort out future problems but she is not anxious to eat even one bite. This alone suggests to me that she is listening to what her body needs. In addition, she has allergic reactions which are probably related to the EE , including hives, diarrhea and occasionally vomiting to unknown allergens. It is clear that her immune system is in overdrive but it is not clear what is the impetus for the symptoms being seen.

Sorry this is so long. I hope it helps you out. If you need information on school issues, feel free to email me (patti_demuri@hotmail.com). We had a health plan in place last year to allow her unlimited access to the bathroom (can't believe this is such a big deal but it really was), access to the office and phone usage, compacting of homework assignments when she was absent, and modifications to home ec classes. This year, we are applying for a 504 or IEP to make sure that all of the issues will be addressed, especially home based instruction if she is out of school for an extended period.

[Virgie]

PattiD2, Oh My! It sounds like we have alot in common with our children. My son (age 17 & a Senior this year) also has EE & Ulcerative Colitis. In his freshman & sophomore year he missed around 160 days total. Bad bad years for him. He had to take several classes over. We did have an IEP in place which did help but there is still only so much that they could do. It is hard to learn when you can't go and even when he did he still felt like crap most of the time. Last year was much better - only missed 20 days and even made it on the B Honor Roll a couple of times. I recently had to get his transcripts for the tech school that he will be going to and I sure can tell when he wasn't feeling well. It makes me sad sometimes to know how horrible those school years were for my son. And because of those bad times we still deal with school issues with the Principal. My son needs 1 more elective credit in order to graduate and he can't get it in the High School because his schedule is already over full so we decided to go the Tech School route and get started on his training for after he graduates and this Principal was totally discouraging my son telling him that he couldn't do it, too much homework, wasn't smart enough, etc. Well how is my son supposed to get that credit then??? I can hardly wait until my son graduates. I will be one of those sobbing mothers at the ceremony simply because I will be so relieved that he finally made it. I am very worried about how he will do with everything this year. Summer hasn't been too bad for him but then he can sleep as late as he wants (works in the afternoon), eat what he wants when he wants, no stress of homework, etc. He sees his GI at Mayo the end of this month too. He still has urgency issues and has rarely ever had solid stools. Don't know if the EE is the problem for him or the UC. He was tested for food allergies but nothing came back positive. He does have airborne allergies though so maybe that is the issue. He was using Flovent to help with the EE but hasn't used it lately. He is getting to a terrible age about complying with his meds. Also his schedule doesn't always jive real good for taking them too. And he feels nauseous after taking his meds sometimes so he doesn't always want to take them for that reason too. Will have to see if some adjusting needs to be done at Mayo or what. He has been taking Imuran & I'm not totally sure that is enough to hold him. He was on Prednisone for a whole year which did help him but he had a horrible time trying to get off & he hated the side effects. So not sure what will be done about him.

And now we have my daughter who is going through this stuff. Why can't I have normal kids?? I really really hope that she does not have as bad of time with school as her brother. She is an A student and gets upset easily if she gets behind in school or does not do well. My son either didn't care that much or just learned to not let it bother him. For a long time I thought my daughters stomach issues was because she would get so upset about the school issues. So until the diarreha came along I always had an excuse for it. Poor kid. I should of thought more that she did have something wrong.

My hubby is another story. He doesn't quite know what to think about all this. He always feels like we did this to the kids. When I first told him about our daughters blood test results he told me I fed her too many peanutbutter sandwiches. Sigh!! Learning about this should all be very interesting indeed.

"We had a health plan in place last year to allow her unlimited access to the bathroom (can't believe this is such a big deal but it really was)," I know what you mean!!! Before my son's UC dx we did get a doctors note for him to be able to use the bathroom whenever he needed and some teachers were ridiculous. The one told him that he just had his lunch hour to go to the bathroom so he shouldn't need to now and can wait. What a teacher, that is his worst time of the day (after eating, especially if it didn't agree with him). It infuriated me that this was such an issue. My son is not, nor ever been a trouble maker type of kid, in fact he was pretty quiet and even somewhat shy so he wouldn't be running around to all the bathrooms throwing toilet paper all around, or yelling in the halls, etc. He just needed to GO & GO NOW!!!!!

I hope all goes well for your daughter at school this year. Hopefully the EE & Celiac will all be under control. I will let you know if my daughter would like to connect with your daughter.

Thanks & sorry so long too. I sometimes feel that I can go on forever about things.

Virgie

[buffettbride]

What we've done for my DD in the past when she gets glutened is follow it up with a good gluten-free food. Seems to provide her some relief and her digestive system something else to do besides process the gluten.

[Lisa]

What we've done for my DD in the past when she gets glutened is follow it up with a good gluten-free food. Seems to provide her some relief and her digestive system something else to do besides process the gluten.

Yes. The BRAT Diet is often recommended for glutenings.... Banana, Rice, Apple Sauce, and Tea.