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Confused

kristin33

By kristin33
in Coping with Celiac Disease

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kristin33 Newbie
kristin33
Posted

I am 26 years old and i have had stomach aches since i was 4-6 years old. I have a chronic epigastric pain/sore spot, chronic nausea after i eat, and then random times i will wake up with abdominal pain and end up on the bathroom floor, feeling like i am going to pass out from the pain which is over my belly button and through my back. I have had several CT's done which were negative, the only labs that were off were my CRP was elevated and sed rate was elevated and white count elevated. The "bad stomach aches" have been getting less frequent since i got older but the chronic epigastric pain had continued and was getting worse. I just thought it was stress but when i got one of my "bad stomach aches" (on the bathroom floor kind) i would take bendryl/zofran which helped them the most. I work in an ER and I was telling a nurse practioner about the bendryl helping my stomach aches and she said that i had some kind of inflamation going on...there are several gluten free people at work who i had overheard gluten causing inflammation. So i stopped gluten that day and my epigastric pain was gone, i tried it for four days and felt amazing, no more pain or sore spot or nausea. Thinking it was in my head i tried some banana bread batter i was making, and within 20 minutes i had epigastric pain and discomfort/bloating lasting 3 days. I thought this was all in my head, but i tried gluten free again and no stomach aches/nausea/bloating, my stomach feels amazing. Yesterday i had soy sauce (not knowning it had wheat in it) and nothing bad happened. Then last night had some beef jerky (not knowing it had wheat on it) and some small gut aches but nothing bad...now i wonder if this is still all in my head, im kind of confused...

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board.

The first thing you need to do is to get a celiac panel done before you go completely gluten free. Do make sure it has the total IGA included. It is important that you are eating gluten for both the blood test and the biopsy (if you choose to have one) to have the best chance to be accurate. The tests do have a high false negative rate though so try the diet after all the tesing you want to do is done.

Symptoms can vary in intesity or be sporatic at times and even change or develop a new presentation. Some of us will also go through withdrawl so if you become a bit moodier or feel 'under the weather' for a bit a couple weeks in that is normal.

You do sound like you could be one of us so do give the diet a good strict try once you are done with testing.

I hope you are feeling better soon. Ask any questions you need to.

Skylark Collaborator
Skylark
Posted

Yes, get celiac testing right away! You're obviously gluten intolerant but you need to know if it's celiac.

Reactions can be off and on for gluten. Sometimes I had horrible GI trouble after meals, other times I was fine. I go through super-sensitive phases where even a little cross-contamination will get me. Other times I can even eat a little soy sauce with no problem.

sandsurfgirl Collaborator
sandsurfgirl
Posted

It's absolutely not in your head. Certain soy sauces are pretty low on gluten even though they contain wheat.

You have suffered for 20 years and going gluten free made you better in a few days! That is what I call a miracle and you are so blessed that you found it now and not when you were 40 like me.

Celiac testing will not come up positive unless you are eating gluten so... now you have to make a choice.

You can do three things.

1. Go gluten free and forget testing. Call yourself celiac and get better. If you do this, I recommend you do NOT tell people you self diagnosed. Tell them you had a blood test.

2. Keep eating gluten and get a blood test. Go gluten free after the test so it has a better chance of being positive. The blood tests do have false negatives so if it's negative I would still go gluten free.

3. Get the blood test and endoscopy. Personally I think this is a bad route to take because you have to stay on gluten and be miserable for another month or longer. Some docs only respect the endoscopy but my take is that it's a big money maker for them and they'd rather do invasive tests than a simple blood test. Some docs will go by blood tests alone if they are positive.

For me, blood tests were enough. I was so sick and there was no way I was going to keep eating gluten for that scope.

No matter what you do, welcome to the club because gluten is your problem.

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