Help With Stomach Pain

[Guest pdwillis]

Hello,

I am wondering what i can give or do for my teenage son. His celiac panel came back high, but we wont get in to the see the dr for another week or two. He had been feeling a little better, but came home from school last night in major stomach pain again. I have been trying to limit his gluten but they said we cant get rid of all the gluten til he does more test. They had given him some pain pills, but they were eating his liver, so we have not wanted to give him that again. It is just so hard to see him in major stomach pain. Before we got the celiac test done, he was in constant pain for 2 weeks the doctors had first said it was constipation, then an week ater said it was gastritis. I am just at lost at what to do for him. Could all this be something other then celiac. I know i have read that celiac goes hand in hand with other illnesses. Any help or advice would be appreciated.

paula

[shayesmom]

Hello,

I am wondering what i can give or do for my teenage son. His celiac panel came back high, but we wont get in to the see the dr for another week or two. He had been feeling a little better, but came home from school last night in major stomach pain again. I have been trying to limit his gluten but they said we cant get rid of all the gluten til he does more test. They had given him some pain pills, but they were eating his liver, so we have not wanted to give him that again. It is just so hard to see him in major stomach pain. Before we got the celiac test done, he was in constant pain for 2 weeks the doctors had first said it was constipation, then an week ater said it was gastritis. I am just at lost at what to do for him. Could all this be something other then celiac. I know i have read that celiac goes hand in hand with other illnesses. Any help or advice would be appreciated.

paula

Paula,

This is such a hard thing to deal with and it's terrible for the child affected as well as for the parents.

The only "advice" that I can give is to light a fire under the doctor's behind and/or sit down and talk with your son about what he wants to do.

It's very easy for the doctors to tell you to wait while they try to fit your son into their schedule....they aren't the ones in chronic pain. If the tests aren't going to be happening for a while, it may be of help to sit down with your son and seriously talk about the gluten-free diet. Explain to him the level of committment it takes to maintain it as well as whether or not he feels he could maintain it long-term if he didn't have a firm diagnosis. Starting the diet, getting better and then stopping it again is not an acceptable approach to staying healthy over the long-term. And you may also want to ask the doctors if they would at least diagnose him as gluten-sensitive if he responded to the diet so that you could have medical excuses for school.

There are other conditions that go hand in hand with Celiac. But many of them are helped by the gluten-free diet as well. And some believe that they could be prevented if the diet had been implemented earlier on.

Your family is faced with a lot of critical decisions to make. Since some of the panels are coming back positive....it's most likely an indication that celiac disease is the problem. Not knowing what else the doctors are looking for....it's hard to give solid advice. Hopefully, you'll have your answers very quickly and no further complications will arise.

Best of luck to you in the next few weeks. I hope you get some definitive answers.

[DEE BAERTSCH]

Hello,

I am wondering what i can give or do for my teenage son. His celiac panel came back high, but we wont get in to the see the dr for another week or two. He had been feeling a little better, but came home from school last night in major stomach pain again. I have been trying to limit his gluten but they said we cant get rid of all the gluten til he does more test. They had given him some pain pills, but they were eating his liver, so we have not wanted to give him that again. It is just so hard to see him in major stomach pain. Before we got the celiac test done, he was in constant pain for 2 weeks the doctors had first said it was constipation, then an week ater said it was gastritis. I am just at lost at what to do for him. Could all this be something other then celiac. I know i have read that celiac goes hand in hand with other illnesses. Any help or advice would be appreciated.

paula

Hi Paula;

I have been gluten free for 3 years now, but in the last year have been struggling with upper right side stomach pain. I've finally found out it is from eating high oxalate foods. Since I don't eat either gluten or lactose I was eating more high oxalate foods. (Oxalate forms kidney stones; that is what causes the stomach pain.) I had been warned that when you have a food intolerance you're more likely to develop another intolerance because you limit your diet to so few foods. The key is to eat a varied diet, but until gluten is eliminated, your son will not get better. This web site is invaluable; I have gotten my best information here. Good Luck!

Dee

[rez]

It only takes one slice of bread a day to keep enough gluten in your system to prepare for a biopsy. Do you know what on his panel came back positive. I would find out. If his tTG was really high, you won't have any problem finding damage. The higher the number, the worse the damage. If his EMA was positive, then that is 100% specific to Celiac and I would be confident that they will find damage in the intestine. If neither tTG or EMA was positive, then there is less a chance it could be Celiac. AGA tests are not useful anymore for Celiac. Is the scope scheduled for two weeks or is that just your consult w/ the GI. I would try to keep gluten in his system as other conditions can improve on a gluten-free diet and can also falsely make some of the bloodwork positive. I would definitely try to rush the doctors a little, but I know they are usually over booked to start. You are so close to getting an answer, I would try to hang in there. It's better to know for sure now what's going on in there, plus they can rule out other issues. Coming back to a gluten challenge later is hard. That's where we're at now. Again, I think the best thing is to get a copy of the blood work and find out what exactly is postive and what the levels are. If he has a really high tTG and a positive EMA, that means it's pretty much 100% Celiac and that there's quite a bit of damage. Good luck!

[rez]

PS. What are the pain pills that were eating his liver?

[blueeyedmanda]

I can give you my pre-celiac history, I had left sided stomach pain which wore me out so I was either at work or in bed/on the couch. The diet was the only thing that helped me, pain relievers did nothing. I know it scary to hear this but I just wanted to help you a bit. What area of the stomach is your son having problems with? Constipation and Gas pain are very uncomfortable and honestly gas pain can be down right painful. I hope your son feels better soon.

[KristenQld]

Paula, my 2 and a half year old has suffered tummy pain also. I wish I'd had access to this website and these insights 2 years ago so I could have had specific tests carried out to determine the exact problems, instead of eliminating and fluffing about like I have done. I know if feels like child abuse, knowing your son is in pain and you're not eliminating the cause, but for what it's worth, some of the information I've read supports the suggestion to keep him going on minimal gluten intake and do all the tests to cover everything. That way, you'll definately know all the information and can make all changes where necessary. You are a good mum for getting this sorted.