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Symptoms/endoscopy/opinions...

geminigal

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geminigal Rookie
geminigal
Posted

:unsure:

These are my symptoms that I have had on and off for the past five years. They actually started after the birth of my first daughter.......

Severe (ranks right up there with child birth) stomach pains only when I eat. Sometimes it is only a bite of something that will start it off. Along with this comes gas, stomach distention, vomiting (mild to severe), nausea, diarrhea, cramping, etc. It usually starts right in the middle of my abdomen (where my stomach is) and sometimes feels like it moves around a certain path. These 'episodes' will last at least 4 if not 6 hours and my stomach will be tender after the other symptoms have stopped.

These episodes come and go and sometimes stay away for 6 months at a time. I have always been sensitive to certain foods....they make me nauseaous (healthy choice brand foods, cheeses, and lord knows a million other things). I have been tested for allergies and am allergic to everything BUT foods. I have had the normal gallbladder checked out...and of course the doctors dismiss it or say I just produce to much acid....so I am on protonix and it still happens. I also have always had weird bowel habits....I usually have diarrhea and it is painful and crampy. Some days I can wake up constipated and then then go right in to the opposite...and sometimes I have to run to the bathroom. I also no longer get my periods and it took me over two years and lots of medical help to have my second child. I have suffered from terrible depression. I also have had bad joint pain and just recently had back surgery. I also leave my windows open in my bedroom (during the winter here in MN) because I sweat so bad at night. I have also had horribly itchy skin specifically on my scalp...but nothing helps and doctors don't know why. And I'm only 29!!!!

I feel like the Dr.'s think I'm nuts and that I keep grasping at straws.............

I finally got a doctor to do an upper endo but he never mentioned celiac, just possibly ibd, dyspepsia or an ulcer.

So I had my endo today and the immediate results showed the my duodenum was very red and they took some biopsies. The nurse in recovery said that usually means they are looking for celiac or an h.pylori (for an ulcer) which I never really considered.

But after reading up on it and reading these message boards I am beginning to wonder if that is what it has been all along...like I said I've always been weird with food and the bad episodes only happen when I eat.

I would love to here any and all opinions and suggestions!!!! Thank you in advance for any help!!!!!

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Ursa Major Collaborator
Ursa Major
Posted

Since you already had a biopsy, you may want to go and get the celiac disease panel bloodwork done, and then go ahead and try the gluten-free diet. Or skip the bloodwork and just try the diet.

The reason that usually they tell you not to go ahead and try the gluten-free diet right away is, that the biopsy might show a false negative if you haven't been eating gluten. You don't have that reason now.

You might find that all your problems clear up on the gluten-free diet. Not necessarily immediately, of course, as it sounds like your small intestine is in pretty bad shape and will take a while to heal.

But you might find that you will start feeling better pretty much immediately. If you do, you will know that gluten is a problem. I would also suggest eliminating dairy.

Welcome to this board, and I hope you find the answers to all your health problems!

GlutenWrangler Contributor
GlutenWrangler
Posted

Your symptoms match well with both celiac disease and an ulcer. Although, with ulcers people experience a lot of pain on an empty stomach, which does not match with you. Since the endoscopy is done, I agree that you should try the gluten-free diet. You will know either way when the results of the biopsy come back. But even if the biopsy comes back negative, it does not mean that you do not have celiac disease or gluten intolerance. Biopsys are helpful when the damage has reached the point where it can be quantified. If you end up with a negative result, but still believe you may have celiac disease, get tested through Enterolab. Their fecal tests are much more sensitive than a biopsy or blood test. I hope this helps.

-Brian

  • 2 weeks later...
geminigal Rookie
geminigal
Posted
  • Author

I had the endoscopy done and was told afterwards that there was very red irritated spots in my stomach and duodenum and that they took biopsies. I got the report back and it said the same thing.

But just yesterday I got the "official" report from the biopsy and it said "no inflammation" and "no cancer" which doesn't help me at all!!!!!!!!!

I am thinking I may just go ahead and try to go gluten free, but I'm just not sure what to do. Pleeeeaase help ???? :)

celiacgirls Apprentice
celiacgirls
Posted

I'd say go ahead and try the diet. It won't hurt you to go gluten free and it may help. There are lots of people here who had a negative biopsy and improved on the diet.

My children and I have never had a biopsy and all of us are gluten free and better off than we were before. My mother did have a biopsy which was negative but she is mostly gluten free anyway and only has symptoms when she eats gluten.

If you feel the need for something somewhat official, you could try the Enterolab testing but lots of doctors don't consider it to be valid anyway.

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