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Guess I Should Have Started In Here!

NancyL

By NancyL
in Meet Up Room

Recommended Posts

NancyL Explorer
NancyL
Posted

Hi all. I'm sorry, I jumped right in and started posting in other folders. I guess I should've started here!

I'm very glad to have found this site. I'm 42 and for years have been having intermittent stomach issues. Since they weren't constant, I never got to the Doctor in time to be evaluated at my worst. Last month, I happened to have my yearly physical on a day when my stomach pain was bad. They sent me straight to the E.R. thinking it was my appendix. Now they don't think so. The pain is often and when it's here, it lasts for several days, then disappears for up to a week.

I've recently (friday) decided on my own to try a gluten-free diet as MANY of my symptoms could be explained by Celiac or a gluten-intolerance. I'm SO.TIRED of this stomach pain recurring. I was ready to do something for myself instead of waiting on the dr's. I did call my doc first and made she she agreed with my decision (she's my gastro). She'd performed a colonoscopy on me last Thursday (as in 4 days ago).

Anyway, I'm glad that this board exists and I'm learning a lot just by reading about what others are going/have gone through. I have symptoms that I didn't even consider as being related that I'm finding many of you have had as a result of Celiac's. Very interesting and I look forward to getting to know you all.

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sa1937 Community Regular
sa1937
Posted

Welcome, Nancy! Like so many of us, I think I've learned more from reading this forum than from anywhere else.

kareng Grand Master
kareng
Posted

Hi all. I'm sorry, I jumped right in and started posting in other folders. I guess I should've started here!

I'm very glad to have found this site. I'm 42 and for years have been having intermittent stomach issues. Since they weren't constant, I never got to the Doctor in time to be evaluated at my worst. Last month, I happened to have my yearly physical on a day when my stomach pain was bad. They sent me straight to the E.R. thinking it was my appendix. Now they don't think so. The pain is often and when it's here, it lasts for several days, then disappears for up to a week.

I've recently (friday) decided on my own to try a gluten-free diet as MANY of my symptoms could be explained by Celiac or a gluten-intolerance. I'm SO.TIRED of this stomach pain recurring. I was ready to do something for myself instead of waiting on the dr's. I did call my doc first and made she she agreed with my decision (she's my gastro). She'd performed a colonoscopy on me last Thursday (as in 4 days ago).

Anyway, I'm glad that this board exists and I'm learning a lot just by reading about what others are going/have gone through. I have symptoms that I didn't even consider as being related that I'm finding many of you have had as a result of Celiac's. Very interesting and I look forward to getting to know you all.

Hi Nancy!

What a shame your GI didn't think of Celiac before the colonoscopy! I would be pretty mad that she didn't do an endoscopy with biopsies while she had you there.

Good luck! Hope going gluten-free helps.

NancyL Explorer
NancyL
Posted
  • Author

Hi Nancy!

What a shame your GI didn't think of Celiac before the colonoscopy! I would be pretty mad that she didn't do an endoscopy with biopsies while she had you there.

Good luck! Hope going gluten-free helps.

It's funny because when she was originally planning to do my colonoscopy she had mentioned doing and Endoscopy too. I don't know how the endoscopy got dropped. Maybe my insurance had denied it because I had an Endoscopy in June for chest pain thought to be due to my hiatal hernia. We were also (when the colonoscopy came up) discussing having my hiatal hernia repaired at the same time but I opted to just stay on my reflux meds. I think the entire procedure got confused or reprioritized since I've had diarrhea everyday for way over a year now.

I don't think my GI doc is looking for or considering Celiac. Just me. I think she was more concerned with cancer due to past polyps (although she never said the "cancer" word). I haven't even been considering cancer as a viable explanation because to me, it just doesn't fit and I have normal white blood cell counts, etc.

She did tell me (after the colonoscopy when I was waking up from anesthetic) that I needed to keep my prep instructions because they'll be the same for if/when we next do a camera in a pill test (can't remember what that is called). I think I'll ask her to not do the camera but to do an endoscopy with biopsies instead. She's very reasonable and I think she'll be open to other ideas.

She's really awesome. She's the one who discovered my "chest pain" was actually radiculopathy (traveling nerve pain) from a disintegrated disk in my neck (the disk literally fell apart when the surgeon touched it). I had a 4 level fusion of vertebrae done in my neck in October due to her vigilance (4 levels because I'd had 2 levels done 8 years ago, so they added 2 more).

Wow, I'm wordy. Sorry.

yorkieluv Newbie
yorkieluv
Posted

Hi Nancy,

Welcome! I am new to all of this too! I hope you find the answers to what is going on with you I know it is so frustrating to know you are so sick but nobody can tell you why. The gluten free diet seems overwhelming in the beginning but it isn't too bad as you get the hang of it. I am on my 3rd month eating gluen free and feel so much better.

Carolyn

mushroom Proficient
mushroom
Posted

She did tell me (after the colonoscopy when I was waking up from anesthetic) that I needed to keep my prep instructions because they'll be the same for if/when we next do a camera in a pill test (can't remember what that is called). I think I'll ask her to not do the camera but to do an endoscopy with biopsies instead. She's very reasonable and I think she'll be open to other ideas.

Welcome to the forum, Nancy.

Don't apologize for wordy posts. They usually contain lots of information :P

Do be aware that if you intend to have an endoscopy you should continue eating gluten up until that time, because once you stop healing starts to occur and the biopsies can be falsely negative. This can happen within a couple of weeks of quitting gluten.

NancyL Explorer
NancyL
Posted
  • Author

Welcome to the forum, Nancy.

Don't apologize for wordy posts. They usually contain lots of information :P

Do be aware that if you intend to have an endoscopy you should continue eating gluten up until that time, because once you stop healing starts to occur and the biopsies can be falsely negative. This can happen within a couple of weeks of quitting gluten.

Thank you. :) I've only been gluten free for 3 days so it would be VERY easy to "fall off the wagon" LOL Although I'm finding the gluten free diet to be very easy. There were lots of things that I was already eating and buying that I didn't even know were gluten free (like my soy creamer that I use instead of regular creamer to help my cholesterol levels).

The only thing I was truly "missing" was cereal and my hubby found me some really yummy gluten free cereal.

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kareng Grand Master
kareng
Posted

It's funny because when she was originally planning to do my colonoscopy she had mentioned doing and Endoscopy too. I don't know how the endoscopy got dropped. Maybe my insurance had denied it because I had an Endoscopy in June for chest pain thought to be due to my hiatal hernia. We were also (when the colonoscopy came up) discussing having my hiatal hernia repaired at the same time but I opted to just stay on my reflux meds. I think the entire procedure got confused or reprioritized since I've had diarrhea everyday for way over a year

Wow, I'm wordy. Sorry.

Too bad for the insurance company! An endo by itself will cost them twice as much. Cheaper to double up with the colonoscopy.

Did you say if you had any celiac blood tests?

Wordy is OK. If we get bored, we'll skip over. :)

NancyL Explorer
NancyL
Posted
  • Author

Too bad for the insurance company! An endo by itself will cost them twice as much. Cheaper to double up with the colonoscopy.

Did you say if you had any celiac blood tests?

I don't think I did but I'm not positive. They've done lots of blood tests, stool tests and diagnostic tests on me in the past year and a half and shamefully, I wasn't interested enough in what they were testing for. I just wanted an answer without considering all of the possibilities.

Wordy is OK. If we get bored, we'll skip over. :)

LMAO! Love the candor. :P

I'm having second thoughts about requesting continuing tests. I realize that today even though it's only day 3 of gluten free, I *think* I may be starting to feel better. With all of the false negatives I've been reading about, I started thinking "isn't my goal to FEEL better?" regardless of a "diagnosis". So rather than put myself (and my insurance company whom I'm certain hates me by now) through more inconvenient, uncomfortable and expensive tests... what will it hurt if gluten free helps me and I never get a true diagnosis?

I figure that thought would best be put through you all who have btdt.

mushroom Proficient
mushroom
Posted

We have learned from experience that it always pays to get copies of all test results from your doctors. It is amazing what can be missed or passed off as normal, what actually isn't done at all because THE LAB decided not to run it (in some cases - a poster actually reported that here) :blink: . We should trust our medical professionals if we can, but my motto is "trust with oversight" :D and not regret in hindsight :ph34r:

Financialman Newbie
Financialman
Posted

Welcome to the forum Nancy. You are definitely in the right place for answers.:D

rosetapper23 Explorer
rosetapper23
Posted

Welcome to the Forum!

I just wanted to add that many people with gluten sensitivity or celiac cannot tolerate soy. I noticed that you mentioned using a soy creamer every day. The first time I tried soy, I rushed myself to the hospital because I was certain I had appendicitis (noticed that you mentioned that possibility, too). So....it may be gluten...or it may be soy...or it may be both.

Good luck to you!

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