Our first real problem - 6 1/2 years later

My daughter Katherine is 13, dx’d at age 7. She has never really been sick. This past November, she had a bad stomach bug, and vomited for only the second time in her life. The bug only lasted about 12 hours, but for a few weeks afterward, she said that her stomach hurt on and off, as if it never got completely better. It became worse in Feb., and thus began the odyssey of trips to various Drs. Her only symptom all along has been stomach pain. Nothing else.

So far, she has tried lactose-free, gluten-free. Monday she had an endoscopy w/ 10 tissue samples taken (no results yet). She has been on different meds, prescribed by the ped gastro. Initial blood work didn’t come up positive for anything. My first thought was celiac, and she went gluten-free for a few days, but I wasn’t sure what other names existed for gluten ingredients. (She tried the gluten-free on her own- Dr. said the tissue biopsy would reveal celiac, if that was the problem.) The pain is constant, but today she was pain-free for 20 minutes, and was so excited -she asked if I could take her to school. Then the pain came back. She’s missed about a month of school so far. She’s in 8th grade, and school is really easy for her, so she is keeping up, even in her trig class. On another note, she was told a few weeks ago that she would need hip surgery, and might never dance again. We see that specialist on 3/28. I’m wondering if this bit of news has made her stomach pain worse, by adding to it.

So we wait, wait, and continue to wait. She has been very frustrated, but is handling this much better than I’d expect. I guess T1 has taught us to be patient. So the big question is: what is going on? I realize it could be anything! She is being treated by a ped gastro, but she is consulting with an adult gastro, b/c Katherine is more like an adult, in that she is 6’ tall and 130 lbs. So they are turning over every rock here. It’s discouraging that everything takes so long. We live in a densely populated area, and are short on Drs., especially specialists. I made the endoscopy appointment more than 2 weeks ago, and the earliest appointment they had was 4/11! She got in Monday on a cancellation.

Sorry for the length of this post. If anyone has any ideas I’d love to hear them!

Hi Jeannie & welcome to TuD!

My guess is on Celiacs - I know I had stomach pain until I stopped eating gluten. Some people do test negative for it but get good results going gluten free so stick to that. Mary said that is what happened to her husband. You should check out the Celiacs group here also:


There is alot of hidden gluten in stuff - since I eat a pretty limited diet, I don’t know all the names. You really need to check every thing - even other meds she may take. Mary suggested to me just Google “is Crest gluten free” or whatever product you are trying to figure out (and yes, it is even in toothpaste!).

I hope you get the hip problem figured out - I know how important dance is to her.

The person next to me came down w/ the gluten business and feels a lot better having adjusted her diet. No D but I hope they can figure it out and get her back on track.

I’m so sorry that Katherine continues to be in pain and you’ve not gotten any answers. Hopefully the biopsy will give some answers and most importantly, give some ideas for a plan to make things better.

Thanks so much Kelly! I’ve heard that everyone feels better after going off gluten.

A question for you: During Katherine’s 504 meeting - which happened to be two weeks ago, smack in the middle of all this – there was some health-related district person there, who commented that if you go gluten-free, even by choice, you can’t ever go back to eating gluten? Have you ever heard that?

Thanks AR - I told her that if she had to go gluten-free, I would do it with her. I can’t believe I promised that…what was I thinking?!

Thanks Lathump! As my mom always says, “This too shall pass!”

I did hear that the longer you are off gluten and then would eat it again, the problems you were having would be worse. I never heard that for doing it voluntarily though. I do eat something every once in awhile and it does seem like the reaction is worse than before. I am having problems now and can’t figuure out where it is coming from. The pharmacy changed suppliers for my Furosemide (which is generic Lasix) and I even stopped using it for 2 weeks to see if that was it.

Cause you are a good Mom! My nephew has Downs and Celiacs is also common with Downs. They thought he had it a couple years ago and my sister said if he had to do gluten free, they all would. I can’t imagine trying to do what Mary does & keeping everything separate!

Please keep us posted on what you find out! I have had T1 for nearly 19 years now and struggle with constant stomach pain as well. I’ve had a slew of tests some years back, and am considering re-doing them again soon, as I’ve really had no concrete answers. Keeping my fingers crossed she gets some relief, and very soon :slight_smile:

Hi -

Sorry Katherine is having a hard time. You’re both troopers. If you go off gluten “by mistake” and it turns out that you don’t have celiac or a gluten allergy, I don’t see why you wouldn’t be able to go back. If you have problems, go off and then go back, I can see why there might be rebound. You sort of lose your calluses. Just my unscientific thoughts.


I would go with all b/f me. Like you say “this to shall pass” You will just have to wait and I don’t know about you but I’m REALLY bad at that.

My 11-year-old nephew is non-verbal autistic, and he has been on a gluten-free diet since his autism dx @ 18 months. He is just starting to add it back in slowly. As for Mary…well, she’s gifted!

I am really bad at it also, but since having kids, I’ve learned to be patient- because what else can I do?!

Raise your hands up in frustration like Doris’ granddaughter is doing in her pic!

Hi Jeannie, I didn’t even know that you were posting over here, but I kept wondering how things were going for Katherine. I am so sorry that you are still waiting! The problem is that the biopsies may not show anything even if the problem is gluten. Have they done any testing on her gallbladder? Mark is having pain again, so just had an ultrasound on his gallbladder because the pain is now on his right side as well as the left that was before the testing for Celiac. If this ultrasound doesn’t show anything, they will do a scan of the gallbladder. Once I googled gallbladder, I realized that this could have been his problem all along but the gastro doc wants him to remain gluten free and doesn’t think it is related. We are not so sure.
I have learned recently from posting on the celiac boards that I don’t know nearly enough about GF. I was just starting to find it a bit easier, but then after listing his diet for a couple of days, I was told that even taco shells and cottage cheese may not be gluten free. Some are, some are not. Then they tell me that he must be eating too much GF stuff, even though I am baking it all myself. It also might be corn, etc.
We are actually hoping that it is the gallbladder and the gluten free might be something that he can stop. I think that it is just wishful thinking, but we are also having to be patient again. He has been dealing with it for more than a year now. It did get better after going gluten free, but it took a couple of months. The problem may just be that he is getting gluten that we don’t realize and that is what is causing the pain.
I think it is wonderful that you offered to go gluten free with Katherine. Of course you can always cheat when she is not around you, same as I do with some of the things that Melissa can’t eat because it spikes her too much. I keep trying new recipes that are really quite good, foccacia bread is my newest one that he really likes a lot.

Have you considered an issue with her pancreas? Usually celiac shows more than just pain as a symptom, such as digestive issues, and a difference in her bowel movements is a big sign. If she is not having any of these symptoms than it is more likely something else. Here is a website that offers diagnosis suggestions, it has helped me alot in the past:


potato chips?

Thanks for the info Mary. She has had two MRIs, a sonogram, extensive blood work, and the endoscopy w/10 tissue biopsies --and I found out a few hours ago that it all came back negative! Next step- could it be endometriosis, which my daughter Kara had surgery for a year ago? And which doesn’t show up on MRIs or scans of any type? I didn’t know what it was until Kara was dx’d, and they say it’s an inherited condition. Another call to make in the morning…

The ped gastro said that for a kid, the tissue biopsy for celiac is rarely wrong, although it can happen more with adults. They have ruled out gallbladder, pancreas, and other organs. She was prescribed a new med today for the pain. So tired of this!

Thanks Rebecca, they have ruled out pancreatic issues, and I found out today that it all was negative! Thanks for the link- I’m going over there now.