Disappointing Endo Results

[nosy parker]

Just got back from my follow-up appointment.  Seems everything is normal.  GI said he took 11 samples and that everything came back as "normal".  Very disappointed.  Suppose I should be happy, but I can't say I am.  Still no real answer as to why I feel like this.  I cannot believe that it's normal to have regular stomach pain.  Not discomfort, real pain that makes you double over at times.  And unexplained low ferritin.  And although not "officially" deficient in B12, my level is on the very low side of normal.

 

Anyway, so fed up.  I truly believe that my GI was very thorough.  I can't force this diagnosis.  He did say it could be a gluten intolerance as well.  But he still thinks IBS.  Feels like I've wasted a year going through this long process, for nothing. 

 

Thanks everyone for your support in my previous posts.  It was very much appreciated.

[IrishHeart]

NCGI, in my opinion, is very serious.

 

Doctors always say "IBS" for a collection of symptoms that involve bowel problems...( and I heard that for 12 years)

the question is WHY is the bowel irritable???

Did he check for Crohn's? Other inflammatory bowel diseases?

 

If being off gluten, (regardless of a negative celiac diagnosis), makes you feel better and stops the "IBS" symptoms, then you have your answer.

 

Sorry you are disappointed, and I do understand why you feel this way. You just want an answer.

[NotMollyRingwald]

I can understand your disappointment.  It's so backward, isn't it?  To be disappointed when a disease has been ruled out??  I've begun preparing myself for "normal" results, too...caz, as weird as the normals would think this sounds, I know having Celiac would justify all the pain and suffering, and maybe make me seem less crazy to them. To "only have IBS" just doesn't seem to mean enough.  The important thing to consider is Non-Celiac Gluten Sensitivity/Intolerance (I see the terms used interchangeably, not sure which one it really is).  If you have seen improvement on the gluten-free diet, that speaks volumes. More importantly, if you decide to go back to gluten, and your symptoms come raging back, are worse, or change significantly, you'll have an answer.  Celiac or NCGS, gluten really messes with many people.  

 

Anyway, I hope your disappointment is short lived, and things improve for you.

((HUGS))

 

ET correct spelling...but there are probably still lots of mistakes. LOL 

[Deaminated Marcus]

Were you eating gluten prior to the endoscopy?

 

Maybe the damage is in a lower part of the intestine.

 

One more shot would be a Celiac blood test or just the DGP-IgG.

 

After that keep a food diary - pain diary to figure out the links.

 

I got some foods figured out.

 

It doesn't hurt to go gluten free and to eat the right foods for your body.

 

Good luck.

[taynichaf]

I can understand your disappointment.  It's so backward, isn't it?  To be disappointed when a disease has been ruled out??  I've begun preparing myself for "normal" results, too...caz, as weird as the normals would think this sounds, I know having Celiac would justify all the pain and suffering, and maybe make me seem less crazy to them. To "only have IBS" just doesn't seem to mean enough.  The important thing to consider is Non-Celiac Gluten Sensitivity/Intolerance (I see the terms used interchangeably, not sure which one it really is).  If you have seen improvement on the gluten-free diet, that speaks volumes. More importantly, if you decide to go back to gluten, and your symptoms come raging back, are worse, or change significantly, you'll have an answer.  Celiac or NCGS, gluten really messes with many people.  

 

Anyway, I hope your disappointment is short lived, and things improve for you.

((HUGS))

 

ET correct spelling...but there are probably still lots of mistakes. LOL 

I am preparing myself for normal results as well

 

But we know we have a problem with gluten, so no matter what our tests says, we should be gluten free! It's tough not having an official disgnoses, but i'm sure, in time, you'll be doing so well on the gluten free diet that your endo results wont make any difference for you... Don't give up the diet!!

[nvsmom]

NCGI/NCGS is awful.   I personally think it can be worse for people because all of the symptoms are the same, there are nutritional deficiencies and inflammation (I personally think the latter can cause the former), pain, fatigue and hair loss... all with no clear cut way to diagnose it.  Awful!  Celiac disease is pretty much the same thing with some autoimmune involvement too (and resultant damage to villi) - that's only one difference.

 

Low B12 is associated with other AI diseases like thyroid issues or rheumatic diseases, as well as the more obvious celiac disease or crohns.  It isn't even found in all with celiac disease - when I was diagnosed with celiac disease, my B12 actually exceeded the normal range of my lab... and I'm pretty sure I've had celiac disease for my whole life.

 

Until you figure out the causes of your problems, I hope you are "band-aiding" your low B12. Do you take B12 sublingually? It is better absorbed that way. You might want to look into B12 shots to give your self a jumpstart too.

 

Hang in there. I hope the gluten-free diet helps you feel better soon.

[Celiac Mindwarp]

Sorry you didn't get the results you wanted. I was just the same last year, and I threw in a negative gene test to prove the point.

I was diagnosed NCGI. I have to say, that removing gluten 'as if' celiac has transformed my life. I have lost migraines, brain fog, anxiety, bloating, inflammation, and the list goes on.

I found that as long as I take it as seriously as celiac, so do those around me. In restaurants, I just say I have celiac - they don't need a doctor's note to prove it .

It is really worth trying for a few months.

Stick around and ask lots of questions. The folks here take it seriously (they must do, they even made me a moderator!)

Good luck

Mw

[IrishHeart]

And If our  Mindwarp here had not persisted and gone gluten-free, she would be just as sick and debilitated as any celiac with the same symptoms.

 

Gluten = poison in people who cannot tolerate it.

[LauraMae]

If your biopsies were positive, did they wait until the follow up appointment to tell you?  Or did they call you ahead of the appointment.  I know my G doc thinks it is just IBS, but he did check for crohns, colitis, and celiac.  I have an appointment tomorrow, but am a little disheartened thinking my biopsies must have come back negative.  Like others, celiac seemed to be the answer as all my symptoms (except weight loss) match so perfectly.  A diagnosis of IBS just seems like a cop out and makes me feel like I'm on my own trying to figure out how to deal with it, even if it is IBS.

 

Anyway, just wondering if they notify you earlier than your scheduled follow up if the biopsies do come back positive.

[nosy parker]

Thanks to everyone for your kind support.  I've spent the last 2 days pretty upset about the whole thing.  But I need to get on with things and take my health into my own hands, regardless.  I do believe gluten is an issue, celiac or not.  To be totally honest, I wanted the vindication of being able to say "see, I'm not crazy and making this up!".  But that's not gonna happen at this point.  I will just have to deal with the future eye rolls when I say I can't eat gluten.  People will just think I'm just jumping on the "trendy" bandwagon and quite frankly that pisses me off!  And what about my kids?  The whole point of this was because I see many symptoms in them that fit with celiac, and I wanted them checked.

 

I can't expect more from my doc.  I know he has done what he can and been quite thorough.  He has done a colonoscopy, upper endo (with 11 samples), and ct scan.  He's ruled out crohn's and colitis and obviously celiac.  Says the low ferritin is probably due to heavy periods at times. He said I could be gluten intolerant, as some people are.  It's pretty hard to argue for further testing.  So I got sent home with "take Metamucil and we'll start from there". Uuugh!!  The problem is the doctors think that what I am looking for is relief for my stomach symptoms, which is wrong.  I have learned to live with and function with stomach pain.  It's all the other stuff that is the problem; brain fog, memory issues, shaking, palpitations, and constant fatigue.  I told him I didn't want any medications for my IBS.  He was surprised by that.  Said that it would improve my "quality of life".  They don`t get it, because they don`t associate the other problems to the gut.  Whatever.  So frustrated!

 

And somewhere creeping at the back of my mind I wonder ''maybe I'm wrong. All my tests show I'm perfectly healthy.  Why am I insisting when all tests say otherwise? Maybe I DO need to eat better and exercise.  Maybe I'm exagerating and it's just normal effects of pre-menopause and aging.  Stop looking for something when there's nothing.  You are being a hypochondriac.''  I don't trust myself without an official diagnosis. Sad.

 

In the meantime I've gotten iron and b12 supplements, on my own.  Wondering if 150 mg of iron is too much?  Wouldn`t want to get toxicity from it.

 

LauraMae, I don't know if they call you more quickly for follow-up if the biopsies are positive.  I have just assumed that, but have no clue if it's true.  And I agree with you that the IBS diagnosis feels like a cop out.  I told my GI this week ''IBS is a catch-all for I don't know what's wrong with you''.

 

Anyway, thanks again everyone.  I feel less nutty here!

[gatita]

I went through a lot of the same. But when you feel so much better going gluten-free (or in my case, get so sick when you try to re-introduce gluten) you know the answer -- you have NCGI.

 

I understand the not wanting to come off as nutty. I went thru a lot of that at first when my tests came back negative, including the gene test.

 

I should add that there is SO much scientists still don't know, and I am believing more and more that NCGI and celiac are part of the same spectrum and will one day be proven to be related.

 

My advice is to just do your own elimination test and if the answer is gluten, hold your head high and tell everyone that eating the stuff makes you very sick, end of story.