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Blood work questions

my.december

my.december

Okay, I have a couple questions here for y'all. Hopefully you can help me out.

First, has anyone ever had a dx of IBD after or while having a normal SED rate? Or does the fact that it was normal mean that we've definitively ruled out IBD? Does it just mean there's no active inflammation at the time? I'm so confused by it. I don't know what exactly it means at all. I mean, is it worth doing the capsule endoscopy the doc has talked about since my SED rate is normal? I don't want to keep going through test after test and having my heart broken when we get no closer to answers.

Second, he wants me to get bloodwork done for some Hemochromatosis Gene. Has anyone else been tested for this? It just seems weird to me.
(Here's a link about it: https://health.google.com/health/ref/Hemochromatosis#Treatment)

But basically, here's the summary:

Hemochromatosis is a disorder that interferes with the body's ability to break down iron, and results in too much iron being absorbed from the gastrointestinal tract.

Symptoms
Abdominal pain
Fatigue
Generalized darkening of skin color (often referred to as bronzing)
Joint pain
Lack of energy
Loss of body hair
Loss of sexual desire
Weight loss
Weakness

And...
Symptoms are often seen in men between the ages of 30 and 50 and in women over 50, although some people may develop problems by age 20.

It just seems weird to me because part of the bloodwork he ordered was to check my iron levels, and he didn't mention anything being off with them. Wouldn't they have shown something off kilter? And it sounds like it's not as common for a 24 year old to present symptoms... not impossible, but not as common.

IDK. I'm just so confused.
 
G

Guest1

The only thing I can really answer is the SED rate -- mine have always come back normal (and I was in PAIN when we took the tests). The *only* abnormal bloodwork I've had was low potassium/magnesium and that was during an ER visit before my diagnosis. You'll find out quickly around here that normal bloodwork means squat.

I did have low vitamin b levels recently, but I had ask specifically for them to test for it.
 
shazamataz

shazamataz

Hi Jess

I don't know enough to know why they would be testing you for Hemochromatosis. However, I had an Uncle with that and it could make him VERY sick! The good news is that all that people with that have to do is to 'give blood' every so often to get some of the excess iron out! So, if that turns out to be your problem that would be grat news - much better than Crohns! :)
 
my.december

my.december

Well, I am a regular blood donor... every 8 weeks. So if that's the problem, I'd probably grumble and throw a fit since it never seems better or worse based upon where I'm at in my donation schedule. The monthly "giving of blood" doesn't seem to have an impact either.

Blah, this is all just SO confusing and frustrating to me.
 
shazamataz

shazamataz

Spunds weird then. I understand that it is the taking out of blood that keeps it under control. Lets hope for some answers soon Jess!
 
J

JMitch

Have you had the IBD Serology test done at Prometheus? If not, I would suggest asking the doc for it. Even though it doesn't give a diagnosis, it can benefit you.
 
my.december

my.december

I think the gremlin/ninja/whatever in my gut is just laughing its butt off at me right now. I think it goes into hiding come time for the tests to reveal him. When the tests are over though, he's back with a vengence. Like I said in my other thread, the diarrhea and pain started right back up today. It's ridiculous. An occassional sharp pain or two with mostly just the intense crampy sort of stuff I can't explain. Not as loud, and I don't feel like there's a baby inside me kicking today, but dealing with pain and the big D.

I'm annoyed and frustrated.
 
my.december

my.december

I've heard nothing of that test JMitch. The only ones I had done were a Differential CBC (I think that's what it's called), 2 types of iron tests, checked my SED rate, and Vitamin B I believe.
 
J

JMitch

Look into it online. It's a normal blood test that checks for antibodies for Crohn's or UC (I think but don't quote me). I really think you should ask.

http://www.testforibd.com/

This is the only blood test (of the MANY I had) that came back positive.
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Hemochromatosis runs in my husbands family...Part of the treatment is regular blood donation...Do you have a family hx of this disease? Were your Fe levels elevated? It's an unusual test to have.

Call and ask him why
....I haven't had a sed rate done 2 years. My doc mainly does CRP's now. When I just checked my past results, they were always elevated....

Ask about the test that Jmitch suggested. It can't hurt.
 
my.december

my.december

No family history of it that I know of, and he said nothing about my Fe levels being abnormal, so I'm totally lost on that one.

I will ask about the test JMitch mentioned. But I'm thinking the normal SED rate may end up being very telling. I don't know. I'm so lost it's ridiculous right now. :(
 
T

Tan

What about your blood lose that doesn't seem to fit in with Hemochromatosis does it?? Def get them to do more tests I know you are probably over getting them done but hopefully one will finally show up something. Good luck my dear.
 
my.december

my.december

No, the blood loss doesn't seem to fit in at all. I'm just so lost by all of this. It's taking all I have in me to not just throw up my hands and cry. I did enough crying last night though and am trying to tell myself it's time to pick myself up and start dealing with this... whatever it is. Right now though, I'm just exhausted and too wiped to even try dealing with it.

I don't even know what to think. Part of me says I should bid y'all adieu since I really don't seem to belong here. IDK though... I haven't found anywhere else where everyone seems to understand the pain and frustration. Nowhere else where people know where it's like to find yourself crippled by abdominal pain and what it's like to go to the bathroom 10-20 times a day or more. What it's like to feel that moment of panic when you look down at the toilet water and see nothing but red. What it's like to know SOMETHING is wrong with you without a clue what it is.

I feel like I'm on a wild goose chase. And I'm still not sure what to think since they DID seem ulceration/inflammation last year. Where does that fit into this picture? Where does it fit in that sometimes it seems I'm MOSTLY okay (there are still things I can NEVER have) and sometimes anything I let pass through my lips seems to send me running to the toilet. When ANYTHING I eat can cause intense pain just an hour or so later. I don't understand where any of it adds up at all. And the more I think about it, the more it frustrates me and makes me want to cry.
 
kenny

kenny

try and stay positive. I know that sounds like a load of bull when things are going rough but try if you can.

Stress really messes with my guts. I have to work to keep it at bay. As long as I am working on the problem somehow I know I am moving forward. You are moving forward even if it is by process of elimination. As stuff gets crossed off the list you can say, Whew ok it wasn't that one. Next! :thumleft:
 
P

Peaches

Just read this after our PM Jess. You should ask for the prometheus test - just see if they will run it. I don't believe it is a definitive test, but if it comes back positive - certainly leans you more in that direction.

Did you share with your doctor that you actually give blood every 8 weeks? Might be an important bit of information for him if he is looking into that diagnosis.

SED rate isn't conclusive either - but just one of many things they look for with *active* disease. Just a marker of inflammation. Try not to get too hung up on any *one* of these tests - it is really the full picture (symptoms, tests, scopes) that he has to look at to make the diagnosis.

Like I said already - quit saying you don't belong here...YOU DO :O) If anyone does YOU DO....you need support getting through this diagnosis. Diagnosis can be one of the most *stressful* times for people. Stay here and get the support you need.

Now get in those Eeyore jammies and try and get some sleep....
 
tamesis

tamesis

I don't have much in the way of suggestions, just wanted to say i can totally empathise with what you're going through, and you're in my thoughts.
 
uab grad student

uab grad student

Good luck December. My SED rates have always been high, but I think that test isn't very specific--can be elevated due to a number of things and just b/c it is normal doesn't rule anything out. I'd think hemochromatosis seems to fit since you said your iron levels are normal... that is unless your regular blood donation has been masking it. You might consider laying off the blood donation then having the blood work done again?
 
uab grad student

uab grad student

Sorry that should have said, "I don't think hemochromatosis seems to fit".. but I would try to temporarily stop the blood donation to see if your symptoms get better/worse. Just a suggestion. I hope you get some answers soon!
 
R

RachLG

Hi my december - you and I are in similar dx boats (or lack of sturdy dx boats anyway). I too have been very frustrated with constant "normal" results and feeling like it's all in my head. However, as you mentioned, we need to keep telling ourselves that people (our relative age especially) do not just start feeling this way! And it certainly should not be assumed okay to continue living this way. I finally got the nerve to tell my GI this and he assured me that "normal" test results do not indicate that a person is not sick...he told me that many of his Crohn's patients (and patients in general) can go undiagnosed due to normal test results or not "red flag" abnormal results. Who knows why this is...it just seems as though diagnosing crohn's is a game of right place right time. I would recommend getting the capsule endoscopy though - it allows for a good look at areas of the bowel that an upper endoscopy and colonoscopy cannot reach. The drawback is that they of course can't take biopsies - but if you're anything like me, those will come back normal anyway :) I hope you find comfort in knowing that no one on this forum would ever tell you that it's all in your head - and that's a lot of people behind you :)
 
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