Started Back On The Gluten Free Today-I Am In Agony-My Stomach Hurts So Bad

[asickdaddy]

I went off the diet for a week. It was not instant the pain, in fact I kind of laughed at first because I felt good. I think the drug effects of being able to eat pizza and hamburgers etc. are pretty fun. But within 4-5 days I started to feel the stomach pain, it was manageable at first. Then last night it was just incredible. It was burning, it was stabbing, I felt hollow. I felt the chills, I felt like I had a fever, I looked in the mirror and looked ill. The pain is upper abdomen and I have had it for a year now, it comes and goes. My endoscopy they said was clean as a whistle. Apparently I am making this pain up in my mind, its a stress reaction or IBS.. yuck

Anyway, I fit all the criteria for celiac. However they did not take biopsies in my endoscopy. My doctor will not diagnose yet.

I decided today to just avoid gluten and get back on the plan. Last time I started the diet by day 3 I was feeling relief.

The acid burning in my throat, the pain in my stomach, the pain in my esophagus, the pain is agony.

I do not use drugs, but I can imagine why someone might be tempted, there is no relief. I am hoping that a strict adherence to the diet will do the trick. Otherwise I may just ask for them to remove my stomach

Anyone else feel these symptoms and gain relief from the diet?

[IrishHeart]

My endoscopy they said was clean as a whistle. Apparently I am making this pain up in my mind, its a stress reaction or IBS.. yuck.

Anyway, I fit all the criteria for celiac. However they did not take biopsies in my endoscopy. My doctor will not diagnose yet.

An endoscopy will not diagnose celiac.

Apparently, your GI doc is as incompetent as mine--not doing a biopsy. Left me to suffer for another two years, based on his "error".

"IBS" is a syndrome--based on LARGE intestine symptoms, not small intestine symptoms--and it is not a diagnosis anyway. Stress is not a CAUSE of stomach pain--it may contribute, some suspect, but it has no scientific basis for "causing" pain or ulcers.

When someone suggests you may be "making something up" ask this... "What is my motive?" and see what they say! It's not like you're a little kid looking to get out of school are you?? geesh, I hate that Bulls--t.

Your reaction to gluten is so obvious. Sounds a lot like mine. Symptoms of celiac include a BURNING esophagus, stomach, entire GI tract (see Recognizing Celiac Disease--great book, BTW) ..all of it. I burned from my mouth to my rectum and my girlie parts--just agony from all that inflammation--and no one could explain that either. To answer your question, yes!!--6 months gluten-free and a lot of that awful pain and burning which made me delirious --has subsided. I had that pain, along with D and C and everything else for over 3 years--and I was told it wasn't celiac either. IDIOTS!!

You can stay on gluten for a few months,(I think that's what they "require" for a gluten challenge--barbaric, if you ask me)--and have another GI Doc do a biopsy OR stay off it and feel better.

In the end, how you feel is the real issue.

Best wishes to you!

[asickdaddy]

An endoscopy will not diagnose celiac.

Apparently, your GI doc is as incompetent as mine--not doing a biopsy. Left me to suffer for another two years, based on his "error".

Your reaction to gluten is so obvious.Sounds a lot like mine. You can stay on it, have another GI Doc do a biopsy OR stay off it and feel better.

In the end, how you feel is the real issue.

Yeah, it was fun in the hospital. I have too much faith in the system, because I truly believed I was going to leave with some answers. It was the absolute opposite.

Anyway, I no longer have health insurance. I am un-insurable at the moment, well to put it mildly the premium increase is so outrageous it would be more than my mortgage monthly. I can't do another endoscopy because I can't pay for it. So I think my only solution is to try and stay firm with the diet. I can't just keep eating it till I find an answer. If this is the source of my pain, I am best just trying to live without gluten and hoping for the best. My doctor said that in 10 years everything about celiac will change dramatically, the understanding and testing will be so much further a long. Well i can't be in this type of pain for 10 years to get the answer. I just have to eat differently, and quit being stubborn.

[IrishHeart]

Pain....no pain.

I think you know what's the better option!!

[WinterSong]

Yeah I'd say it definitely sounds like Celiac. Better to just do the diet right away and start healing again if you can't afford the testing.

Hope you feel better soon!

[asickdaddy]

Thanks for the replies

Well, the pain tonight got so bad that it felt like I was having heart problems.

My anxiety shot through the roof and I sort of panicked.

I think my mental state was worn out from the pain and I drove to the ER.

The ER doctor was super nice. They tested my heart-normal, my blood-everything normal-catscan of my abdomen-normal

The catscan was freaky. I have had them before but this time was different. I felt super warm and strange and then I felt like I got punched and the wind knocked out of me. It was concerning. I asked the doctor and he said it can happen.

I then sat in the room with just a burning throat and acid reflux madness.

Did a GI cocktail, did some narcotics, and sent home with an rx of percocet.

This doctor said everything was fine, but there is something wrong. Meaning I am healthy, but something is causing the pain. He suggested I try staying on a gluten free diet rather than doing little trial runs.

I guess that is the plan. Tomorrow will be day 2.

Thanks for listening, its nice to clear my head.

[GFinDC]

well, going back on the diet sounds like a great idea. There is no gold star for passing the celiac tests. You don't get any benefit from it medically because there is no treatment except the gluten-free diet. Most doctors will just say go away and eat gluten-free.

In England they have a cost reimbursement for gluten-free foods, but not in the USA. Getting diagnosed may raise your insurance costs in the future also. So there can be a downside to going the official diagnosis route.

The thing is, it sounds like your body is not confused at all, and is telling you very clearly to stay away from gluten. It's better to listen to your own body than a doctor anyway.

After you have been gluten-free for a while it gets much easier to stay on the diet. it's mainly a matter of learning good things to eat and getting used to a healthy whole foods diet.

[IrishHeart]

Thanks for the replies

Well, the pain tonight got so bad that it felt like I was having heart problems.

My anxiety shot through the roof and I sort of panicked.

I think my mental state was worn out from the pain and I drove to the ER.

The ER doctor was super nice. They tested my heart-normal, my blood-everything normal-catscan of my abdomen-normal

The catscan was freaky. I have had them before but this time was different. I felt super warm and strange and then I felt like I got punched and the wind knocked out of me. It was concerning. I asked the doctor and he said it can happen.

I then sat in the room with just a burning throat and acid reflux madness.

Did a GI cocktail, did some narcotics, and sent home with an rx of percocet.

This doctor said everything was fine, but there is something wrong. Meaning I am healthy, but something is causing the pain. He suggested I try staying on a gluten free diet rather than doing little trial runs.

I guess that is the plan. Tomorrow will be day 2.

Thanks for listening, its nice to clear my head.

Oh you poor guy! I KNOW this feeling...geez, kiddo--I really think you HAVE to stick to the gluten-free diet. The doctors only know how to symptom treat.

At least that one doctor suggested you stick with it. Mine sniped at me " It's not gluten. You can eat gluten!" WRONG!

Take good care of yourself!!