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Celiac? Gluten Sensitive? Something else?

BHeb21
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BHeb21 Newbie
BHeb21
Posted

Hello

I made this account tonight because I am need of help by those with more experience than me. Basically since June I've been feeling horrible every morning throughout the entire day. My main symptoms were extreme nausea (no vomiting), stomach pain, constipation, and diarrhea. I was in and out of the doctors doing blood work and taking medicines for other things like ibs and gastritis until we started to think about a month and a half later that it could be celiac or a gluten insensitivity. My typical day was wake up around 9 am, feel nauseous, eat little while drinking water, and feel okay enough to fall asleep around 3 pm for a few hours and wake up feeling better with almost no nausea at all. After seeing a Gastroenterologist and having extensive blood work done, everything came back looking normal (beginning of august). We kept up with gluten free diet while taking protonix and eventually things started to turn around. I was waking up less nauseous and it would only last a few hours or a couple compared to all day. It ended up getting better to the point where i woke up later than 8 or 9 am with finally no nausea or hunger pains and i would be able to eat a fair amount throughout the day and not have any symptoms besides occasional bloating. Something happened last thursday where I woke up with nausea and it lasted a couple hours. It has been the same thing since then and even today was one of my worst days with eating little and nausea being present after eating any meal no matter how small. I never use to get nausea at night and for the past two days i have had it for a couple hours before bed. I canceled my endoscopy that was scheduled for the 27th this monday about a week prior to that date because i had felt so much better but now i regret it. We think ive been glutened but i keep a food journal and i havent been eating anything different than before i had made great progress. Does anyone else have this problem? Does this sound like ive been glutened? Something feels different and although i havent been officially diagnosed celiacs I just dont understand why id be feeling this way after making such great progress. This all comes when im starting up school and an internship and is very inconvenient and depressing. I have my own utensils and cookware that I use and I am extra paranoid and safe about making sure my areas in the kitchen are gluten free and clean. Does anyone have any tips or knowledge about this? Should I call up my doctor again? The nausea was so bad this summer i couldnt work and couldnt do anything besides pace around the house while sipping water with the air conditioner running. Im really hoping i can go back to feeling the way i felt just a week ago so that i can start up my internship and make it to school everyday. I appreciate any and all feedback!

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tessa25 Rising Star
tessa25
Posted

Your supposed to be eating gluten daily for at least two weeks before the endoscopy/biopsies. And you're supposed to be eating gluten daily for 12 weeks for any blood tests.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You can check to see if your celiac blood testing included all of those tests. Then you need to decide how long you're willing to eat gluten for if you want to get tested. Everybody is different. Some people can go 100% gluten-free without a diagnosis and some people need a diagnosis.

If you do have celiac and you were 100% gluten-free it could have just been that you irritated something by eating spicy food or some other irritant. It takes many months to heal fully.

BHeb21 Newbie
BHeb21
Posted
  • Author
22 hours ago, tessa25 said:

Your supposed to be eating gluten daily for at least two weeks before the endoscopy/biopsies. And you're supposed to be eating gluten daily for 12 weeks for any blood tests.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You can check to see if your celiac blood testing included all of those tests. Then you need to decide how long you're willing to eat gluten for if you want to get tested. Everybody is different. Some people can go 100% gluten-free without a diagnosis and some people need a diagnosis.

If you do have celiac and you were 100% gluten-free it could have just been that you irritated something by eating spicy food or some other irritant. It takes many months to heal fully.

Thank you for the reply. Ive seen recently it takes long to heal which is very depressing. Theres no way im going back to eating gluten again and risking feeling as bad as I did this summer

GFinDC Veteran
GFinDC
Posted

You don't have to be tested to go gluten-free.  But it is easier to be diagnosed if the testing is done before going gluten-free.  There is a thread called Newbie 101 in the Coping With section that may help.  Recovery from celiac disease damage can take 18 months or more.  Symptoms during that time can vary quite a lot.

To avoid the tiny amount of gluten that can cause an immune reaction takes some effort.  I suggest eating mostly whole foods for the first 6 months.  No dairy, no processed foods.  Also avoid sugar and carby foods like white rice and white potatoes.  The simpler your diet is the simpler it is to troubleshoot the cause of symptoms.

You can always call yourself NCGS ( non-celiac gluten sensitive).  That's what I am officially.  But my symptoms from eating gluten say otherwise.

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