Just Diagnosed Celiac With Pain

[kate12345]

I am trying to figure out what to do with my 5 year old. The biopsy came back and she does have celiac. I have had her on gluten free for 11 days. As soon as she starts to eat, she says her stomach hurts. She is on Prevacid, Maalox and Tylenol as it hurts her so much. I only give her Maalox and Tylenol as needed, which is still everyday.

Did any of you experience this? She will say her stomach hurts as soon as she starts eating most times. She points to her belly button area. Can you feel the damage from the small intestine--it that what hurts when she starts eating? I would expect her to be better by now. She does not have significant heartburn, her esophagus looked normal and stomach as well according to GI. I am not sure if I should keep waiting out, or pursue other things it could be, which I have no idea what it could be. I am going to try eliminating dairy now, but not really sure it is the issue. Thanks, Jennifer

[beebs]

My son had/has tummy pain- having said that it did show up as inflammation in the intestines, to be honest - everyone feels everything to do with this stupid disease differently. It can also take quite a long while to heal. Some people feel better instantly and others it takes years. I hope its not that for you guys, but 11 days is fairly recent. I'd give it another couple of weeks, but maybe try eliminating dairy just for now - often the damage can make the person lactose intolerant as well but that should stop once she is healed.

Did they say anything else about her intussusception? I wonder if it will go away after she is gluten-free.

[pricklypear1971]

You might google celiac groups in your local area, some have kids groups too.

That would be a great resource for both of you. You could meet other parents and ask questions and she could meet other celiac kids.

[mushroom]

I cannot tell from your posts whether or not she is eating dairy. That would be the primary candidate for continuing tummy aches untill she has healed if she has villous damage, because she will not be making the enzyme to digest lactose. Not only that, but 10-11 days is a short time; her gut is still damaged and has to heal before she can start processing her food properly. A damaged small intestine takes time to heal and perform its proper functions and until then food of any kind is going to present digestive problems. I know we are all impatient, but it does just take some time.

[AVR1962]

Try to take a light diet with her, boiled chicken but not much meat per serving. Rice or potatoes are good, eggs if she has no reaction, things that are easy on the stomach. I would take out anything acidic as these could be irritating her.....tomatoes, oranges, etc. You might even consider taking her off dairy as well. Unfortunately all too many times many of us cannot tolerate dairy when our system is compromized. If that doesn't work I would definately go back to the doc to see if something more could be going on.

[kate12345]

I keep wondering if that transient small intestine intussception could be causing pain, too. But the dr has me told me it would not cause pain. I may need to get a second opinion on that. Her dr is a pediatric GI, so I would hope he would know. I have not eliminated dairy yet, but will start today. I have not read the report, but I know they said she has the blunting of the villi typical with celiac. I am going to try the bland diet thing again and see if that helps. It does not seem to appear to be acidic foods most of the time but everything. It is hard to eliminate dairy and gluten at the same time, but I am to the point where I have to do something and do not have a choice. Her next appt is not til Jan, and they say that is the earliest they have available. Whatever, do they really expect children to remain in pain this long? Most days are tolerable but yesterday was difficult for her as it kept hurting and I had given her everything I could medicine wise. Thanks for the ideas.

[beebs]

I'm not sure if its different between children and adults - but my intussusception on a scale of 1-10 is 10 - its is as bad as labour (and I had a shocking labour that all went wrong). I was talking to my sons Paed GI about it - and he was saying- I/S can be agonising - so bad that lots of people can't even describe it. Some people have no pain, some have mild, some have severe. So unless kids and adults are different?? Why would they be?? Sounds very iffy. My I/S is so severe that I can't sit up, can't talk, so people are like "Should we call you an ambulance" and I can't even say yes or no etc.

Might be worth making big batches of gluten/dairy free food and freezing it. My son is gluten-free and lactose free - so not dairy. He seems okay with that - but it does make it so much harder than just being gluten-free. So I got myself a slow cooker (think you guys call them crock pots or something) You plug them in and they cook all day. And then make casseroles/stews/beans etc in big batches and freeze in individual meals. Otherwise it all gets overwhelming.

[kate12345]

So is yours small bowel and transient?

Also, is there not anything you can do about it?

[Booghead]

Poor thing. Eliminate dairy. I'm 17 and I elimanated milk before I even gave a second thought to celiacs. It made my stomach hurt almost instantly. I am now going dairy free (sigh). I can honestly say dairy free is going to be ten times harder then gluten free and the 2 together are too much to take! But it's only for a short time. 1 year tops in my case. Your little one sounds so sick, it might take her a bit longer. But seeing as she is so young I would doubt it. But i'm not a doctor I am still feeling sick 2 weeks gluten free. Someone told me it is detox and withdrawals. So take those into account and give her some time. In a way think of how lucky she will be having this all done and fixed by the time she's bigger. I know how hard it is to do this diagnosis process and high school, and the stress of everyday life. It is also easier because the damage will probably heal faster and is less extensive on a child. I hope she gets feeling better, it's a tough road. TUFF STUFF

Good Luck

p.s. I am also thinking of a blander diet to accomadate my unhappy tummy.

[beebs]

So is yours small bowel and transient?

Also, is there not anything you can do about it?

Yes and Yes, mine resolves on its own and then comes back if I eat gluten. So the only thing I can do about it is remain gluten free. The thing is you never know when it won't resolve and end up needing surgery. I had a very bad episode in January of this year when pregnant. I really thought I would die and the GI said it sounded as if it had *stuck* for awhile - but that luckily, it resolved.

[Roda]

Sounds like she is feeling bad. You got a lot of good advice from the other posters. Have they checked her vitamin and mineral levels? They too often are low/deficient because of the malabsorption. A good probiotic may help her also.

Just to put it out there are you preventing cross contamination the best you can when you cook for her? Are you maintaining a shared kitchen or did the the whole house go gluten free?

I do maintain a shared household but here was a few things(O.K. alot ) I did after I was diagnosed.

-went through the fridge/pantry and donated to the local food bank what the others in the house wouldn't eat

-made a dedicated shelf in the pantry, drawer in the fridge and a section of the counter for the gluten things. The rest was dedicated gluten free.

-bought another toaster and pasta strainer for gluten free only

-replace any scratched or worn cookware and plastic ware.

-replaced all of my bakeware except the glass/pyrex pans.

-relaced my cutting board, wooden spoons and waffle iron.

-replaced spice/herbs and baking needs(sugar, baking soda, etc)that may have had cross contamination

-got rid of all regular flour/baking mixes and only bake gluten free. The flour can stay airborn and settle back down and contaminate the counters. If the gluten eaters wanted something I couldn't/wouldn't make they went to the bakery.

-all shared meals were prepared gluten free. I have no desire to cook two separate meals.

-when anyone ate gluten they had to have it on a plate and not walk around the house touching things. They had to wash when they were done.

-made sure my personal care products were gluten free(shampoo, conditioner, hand lotion, makeup, lip balm etc.)

-we do share things like peanut butter, lunch meat and cheese. Gluten eater(hubby) takes out what he wants before he touches his bread.

Two years after I was diagnosed my youngest son was diagnosed. Then just the end of August my oldest son went gluten free. So the only one that still eats gluten in our house is my husband. Since the kids went gluten free, the only gluten in the house is my husbands bread, crackers, occasional cookies/graham crackers and cereal. He is very careful about not cross contaminating. So far he is doing well and noone is getting sick. I eventually put my dog and cat on a grain free diet also. Not everyone needs to to this, but since I at one point was having a flare, I eliminated it just in case. Also it is better because the kids feed the animals the most.

I hope your daughter starts feeling better soon. Once she is healed enough she very well may not need any of her medications anymore.