Normal - Now What?

[ohsotired]

Just got a phone call from my GI's office with both my stool sample and colonoscopy biopsy results.

"Everything looks normal. No parasites, no indication of colitis."

The nurse said that the doc usually does a follow up 4-6 weeks after the scope.

Uhmmmmmmm........kay.......but I still feel crappy, and we've not solved anything.

Well, we've ruled out a bunch of pretty serious stuff, for which I am quite grateful, but we haven't figured out what's making me feel so bad.

So I pushed a bit, and managed to get a follow up for next week.

There's still a chance I could test positive on the rest of the Celiac blood tests (they ran only one test), but apart from that where do we go from here?

I'm still not 100% certain that I'm looking at Celiac OR gluten intolerance, but I do know that my 4 day gluten-free mini trial yielded pretty good results. So do I just commit to a gluten-free lifestyle? Do I pursue other avenues of diagnostics (potential time and money waster, especially if I just get told IBS again).

I'm thinking I'd like to have a vitamin/mineral blood test done, as I think I'm lacking in a bunch of areas - but through the GI? Or go back to my PCP for that? What would I ask for?

Do I go the Enterolab route? Or maybe food allergy testing?

Any and all advice would be welcome. I'm tired of hearing "all normal" when I KNOW there is something going on.

[TrillumHunter]

No endoscopy? If your celiac panel comes back positive they will probably suggest that next. I would as for vitamin/mineral levels because if they're low you can make a case for malabsorption. How about your gallbladder? It can be causing trouble even without pain.

You have some more investigating before you give up. Don't give up yet. Be persistant and educate yourself. It is worth it.

Take care!

[Live2BWell]

(( Hugs )) As you know, I'm in the same boat, so much support to you!

Something else I forgot to mention is, that I personally have had great diagnostic results with is muscle testing through a naturopathic doctor. I have considered going back - but finances do not allow for that at the moment (I dont know of any alternative type medicine that is covered under insurance, especially Medicare - which is what i have.)

Anyway, I used to see a naturopath about a year and a half ago, and I did general health testing (the one that I could afford, LoL!) and she mentioned several health ailments that I tested positive for, one of which was intestinal parisitism. Well, fast forward 1.5 years, and lo and behold I end up having intestinal parasites (that took all that time to actually, umm, show up) - crazy huh?

There are several other things that swayed me into understanding the truth behind muscle testing - and while I can't say I am 100% faithful to it's accuracy, I also can say that any skepticism I had before has seriously been thwarted.

With that being said, if it were me - you know what I'd do (considering we just talked on PM, LOL)

Hang in there, hon!

[ohsotired]

Doc didn't say anything about endoscopy. Even though during my initial visit with him, I alluded to the fact that I thought this was gluten related, he just scheduled the colonoscopy. What he said to me was "we won't call it IBS until we rule out everything else." (A previous doc dx'd me with IBS without even doing any tests.)

Said he was running a Celiac Panel, which came back 'normal'. But after actually seeing the test results myself, they only ran tTG IgA - so that's why I'll be pushing for the rest of them.

There are other things on my 'normal' blood work that lead me to believe that further vitamin/mineral testing should be done. High MCV levels, for one, which could indicate macrocytic anemia (B12/Folic Acid deficiencies).

I think my PCP did blood work for gall bladder stuff back in November, but honestly, I can't remember and I never got paper copies of those results. All I know is that blood work was also 'normal'.

I guess that's a good point to ponder though, as my sister suffers from similar issues as me (or rather I suffer from similar things as her - she's been going through this longer than me) and she actually had her gall bladder removed a few years ago. Didn't even come close to solving all of her issues though.........

I know it's not time to give up yet. I'm just frustrated. I mean, I guess I'm glad to be 'normal' but I sure don't feel normal.

[ohsotired]

Jess,

Thanks for replying, girl!

I'm not sure I believe in muscle testing, but I have read many accounts from people here that it seemed to be accurate.

I'd certainly consider it if I don't get anywhere with PCP and the GI.

How would one go about finding a Naturopath? If I decide to go that route, I mean.

[Ursa Major]

I just want to mention that there are people here who had negative blood work but a positive biopsy. The blood work yields lots of false negatives, and your GI really should do an endoscopy with biopsies as well, before he has a right to tell you it isn't celiac disease (and even with a negative biopsy on top of negative bloods, celiac disease can't be ruled out).

I am glad he isn't calling it IBS yet. But if he even considers calling it that in the future, he doesn't know what he is talking about. Because IBS is not a valid diagnosis, all it says is that you have bowel problems. You already know that. But there is a cause, and it needs to be found.

Check your yellow pages to find a naturopathic doctor. Make sure he/she is actually a doctor, as some people call themselves naturopaths who have had very little training. Naturopathic doctors have gone to university to study, and have been schooled just as long as regular MDs. Except that they actually had classes in nutrition, while regular MDs have barely touched on that subject, and most of them are completely ignorant about nutrition.

[ohsotired]

Do you think it would be worthwhile to ask for an endoscopy, then? Along with the rest of the blood work, of course.

When he told me "we won't call it IBS until we rule out everything else" I got the impression that he also feels that IBS isn't a valid diagnosis, though didn't question him about it.

I'll check the yellow pages to see if I can find some listings for a naturopath.

Thanks, Ursa!

[TrillumHunter]

I would ask specifically for a SERUM B12 and SERUM iron. I went through all the weird looking blood cells that no one could figure out. They KNEW my blood wasn't normal but they couldn't figure out why. When you have both B12 and iron anemia it causes some strange looking blood! Sadly, I was told it was not a malabsorption issue. It's taken about four more years to get it all figured out--with me pushing and complaining all the way. No one should feel exhausted all the time. I don't think anyone ever thought it was my gut causing problems because I'm overweight. Big mistake on their part that cost me lots of years.

It's tough but fight the ibs crap. You can get better! I have!

[Ursa Major]

Do you think it would be worthwhile to ask for an endoscopy, then? Along with the rest of the blood work, of course.

When he told me "we won't call it IBS until we rule out everything else" I got the impression that he also feels that IBS isn't a valid diagnosis, though didn't question him about it.

I'll check the yellow pages to see if I can find some listings for a naturopath.

Thanks, Ursa!

Oh, another thing, just because they said you don't have parasites, that may not be true at all. There are hundreds of different parasites, but normally they test for no more than 40 (if that). I was told I had no parasites, either. When I did the Open Original Shared Link parasite cleanse in May, I must have had thousands (yes, thousands) of parasites come out. So much for being negative for parasites!

And yes, it would be a good idea to ask for an endoscopy as well. And make sure you insist on them taking at least six biopsies (most take two or three), to make sure that you even have a chance of it being accurate.

[Amyleigh0007]

I totally understand! I have been told IBS and "normal tests results" for 19 years but going gluten free was the only thing that has made me feel better. I am having food allergy tests done next week just to see if I have any since my son has many. I am sure everything will come back "normal".

[ohsotired]

TrilliumHunter - I will add those to my growing list of things to ask for! I'm pretty sure my iron levels were tested in November, but again, I don't have copies of that blood work, so I can't be 100% sure of what the results were.

UrsaMajor - I really wondered about the parasites........the hubster and I took a quick trip to Mexico in summer of '01 where we both got really sick afterwards (not the water though - we think it was the lime they put in our beer, as that's the only thing we had both consumed while there. Hubby ate, I didn't.) Will also request the endoscopy.

Amyleigh007 - You tested negative for celiac disease, correct? (Am I remembering right?) But you went gluten-free anyway and it made a difference? Good luck with the food allergy testing, and I'd love to hear what you find out.

[Amyleigh0007]

Ohsotired: Yes! I was tested and, what a shock, was negative. I was so discouraged. I decided to go completely gluten free with my son not only to support him but to see if it would help my IBS symptoms. I feel better than I have in the last 10 years.

[ohsotired]

Glad to know the diet has helped you! Once I can get the rest of the celiac disease blood tests (and possible endoscopy) out of the way, I think I'll start the gluten-free diet again and see how I do for a few months at least.

[ravenwoodglass]

Glad to know the diet has helped you! Once I can get the rest of the celiac disease blood tests (and possible endoscopy) out of the way, I think I'll start the gluten-free diet again and see how I do for a few months at least.

Good plan on doing the diet anyway after you have done all the testing you feel you want to go through. IMHO it was NOT a good plan to put you through the colonoscopy and wait on the endo. There are two reasons why I think this was a bad idea, one there is no way he could find celiac on a colonoscopy so if there was strong reason to suspect celiac he was wasting your time. Second, by not doing the endo at the same time he is forcing you or your insurance company to pay twice for everything involved in the procedure, good for his pocketbook but not for you. It would have taken him only a few minutes more to scope you while you were still in twilight land but now you will have to pay for him, the room, the sedation (with the inherent risks associated with any sedation) and everything else again. I personally would look for a new GI.

You do need to be aware also that there is about 30% of those with celiac who show up negative on blood tests, I am one of them. Because I was negative on blood tests no doctor told me to try the diet. This delayed my diagnosis for many years and resulted in my being close to death and facing bowel surgery before I was at last diagnosed. My health took a incredible turn for the better within just a couple of weeks and in the following year I saw all my autoimmune disorders go into remission.

Your plan to do the diet for a few months when you are done with testing is a good one. It really is the best way to know.

[ohsotired]

ravenwoodglass - I agree with you, for the most part, about the endoscopy not being done while I was in for the colonoscopy. I'm irked that I'll have to do all this a second time (hopefully without MoviPrep for the endo?). But in the doc's defense (or mine for not bringing it up with him?) I think he was more concerned about ruling out Chron's and/or Ulcerative Colitis (my sister was dx'd with UC). I just don't think that Celiac Disease was high on his list.

Maybe it should have been, as I told him that I did the mini gluten-free challenge, and that I did notice a difference.

I'm not keen on looking for a new GI just yet - although you are probably right.

I'll do the follow up visit, see what he says, and make a decision from there.

I do know about the percentage of people that show up negative on blood tests, and certainly won't let that stop me from going back on the diet. It's terrible that you went through all you did before you found the answer, and some relief.

Thanks so much for chiming in here.