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Crohn's Disease
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Posted 11/14/2016 10:31 PM (GMT 0)
Hi everyone, I should mention right away that I have not been diagnosed with Crohn's Disease. I figured that people here probably have been through a lengthy process of being diagnosed. Please let me know if this is not appropriate for this forum.

A bit of background - I'm 20-years-old and have been dealing with some odd symptoms since the springtime. I've lost about 55 pounds (a bit of a loss of appetite), my hair is falling out and I'm constantly tired. I occasionally have GI problems, but nothing consistent. Sometimes diarrhea, sometimes with mucous, other times floating, foul smelling stool... but other times, I have normal bowel movements. I've had my thyroid checked, along with various other things. I've seen my PCP, an endocrinologist, and a dietitian. Most recently, I have been referred to a gastroenterologist.

Because of only intermittent symptoms, I'm worried that it's nothing. I'm embarrassed that no one has been able to find anything. I want an answer, yet I'm trying to convince myself that maybe this is all psychological and there won't be a concrete answer. It doesn't help that my parents aren't very concerned either (I don't talk in depth about my issues).

Also, I'm unsure if it is/could be related, but I believe my ferritin is fairly low. It was not addressed by my PCP, but when I divulged into my own research, I've discovered that it's on the lower end on normal. I don't think my periods are especially heavy, I eat red meat (probably 2x/week). Has anyone else had the issue?

Ferritin: 11 ng/mL

I'm not sure exactly what I'm looking for in this post... maybe suggestions? Or reassurance? If you have anything that could help me, please share.

I appreciate it! Take care :)
Posted 11/14/2016 11:13 PM (GMT 0)
55lb is a hell of a lot to lose - how much less have you been eating?

What you have *could* be Crohn's. The GI should do a colonoscopy and at least one small bowel test (MRI/CT scan or pill cam) to test for Crohn's. Without those tests, there's very little I or anyone else can tell you until then. The low ferritin could be relevant: anaemia is common in Crohn's and is something I suffered from for years.

Good luck.
Posted 11/14/2016 11:57 PM (GMT 0)
Hi NiceCupOfTea, thank you for the response!

I know that 55 pounds is so much weight to lose. I wouldn't say my eating habits have been low enough to cause that. There will be some days that I really don't have much of an appetite, but I'm always good about getting something into me. Other days, I have the hungry horrors. The thing is, I was pretty overweight prior to this, so many doctors see this as a "good thing". I'm now at a pretty healthy weight for my height. While I'm happy I guess... I don't know how it happened, it's hard to accept compliments because I haven't done much and I haven't been to the gym/active in ages.

I appreciate the suggestions. Obviously I know that you cannot diagnose or anything, I was just hoping for some suggestions. I had a feeling the low ferritin could be linked, however my hemoglobin is still normal (lower end of normal).

Thanks again! Hope you're doing well.
Posted 11/15/2016 12:05 AM (GMT 0)
What tests have been run so far? Just blood tests or more than that? If just blood tests, which ones? Did they check CRP or ESR in your blood tests? Anything off besides ferritin being low?

Have you had the blood test to check for celiac disease?

All those can be done by a PCP before you see a gastroenterologist. That should give you a head start for when you do see a gastro doc.

The gastroenterologist may want to do a colonoscopy and/or an MRI or CT scan.
Posted 11/15/2016 12:27 AM (GMT 0)
Hi, beave, thank you for your response!

I've just had a bunch of blood tests done, apparently nothing of significance.
I've had a slightly low MCH, elevated neutrophils and decreased lymphocytes (only slightly so) and a low potassium (I assume related to the GI problems). My DHEA-Sulfate is also elevated. No mention regarding any of these from any doctor.

I've had an ESR, but no CRP
ESR: 7mm [0-20] so well within normal limits.

I have had one blood test regarding Celiac Disease
tTG IgA: 5 units [0-19] again, very within normal limits. However, I did find a source online that said it could be a weak positive... I'm probably reading too much into it.

I haven't even made the appointment with the GI yet... worried it will turn up as nothing and I'll look even crazier.

Thanks again for your help!
Posted 11/15/2016 12:42 AM (GMT 0)
What lab did your blood tests? I too see that your anti-tTG IgA could be a weak positive. I'd look into that more or ask your PCP for more tests there. Also ask for CRP to be tested.

A gastroenterologist would need to do an upper endoscopy and take biopsies to know for certain whether or not you have celiac, but that result you listed raises a little suspicion IMO.
Posted 11/15/2016 1:48 AM (GMT 0)
I'm not exactly sure the specific lab company my tests were done, just my local hospital lab... but in my research I saw that anything greater than 4 is considered a weak positive. Calling the doctor is so anxiety provoking to me... I am embarrassed to question or provide my opinion. I know they're not perfect, I just worry about being wrong or looking stupid. Weird fear, I know. But, I'm kinda glad to hear that it raised a bit of a suspicion in you as well.

I know that a CRP and ESR both show inflammation, how are they different? Can one be elevated while another is normal?
Posted 11/15/2016 2:23 AM (GMT 0)
Hi meganec17,
It can be very hard to get a diagnosis for some people. Keep with it and keep looking for answers. I went through several years where I was not taken seriously and even I doubted myself half the time despite the obvious evidence because I felt silly after a while when things were coming back okay. But it was totally missed and by the time I saw a GI several years after symptoms started, I was a mess. I wish now that I had been more sure of myself and insistent but I was about your age/little younger and wanted to believe them when they said things were fine despite the little voice in the back of my mind saying "crohn's".
So yeah it's absolutely not a weird fear (or it might be but I have it too haha), I still deal with it every time I go to the doctor and complain about something new I'm afraid I'll look silly but if you looked at my record you would know that there is usually something going on that is serious. I could write a novel about it, the most significant one though was when my primary thought I was having trouble with anxiety(which I don't have) but it turned out to be a pulmonary embolism. Luckily she is an awesome doctor and realized when I continued to complain of this several times worth in the week there was a major issue. I find anytime I disagree with a doctor or am concerned something is being missed, I do my best to be calm and respectful but also emphatic. It may take a little while but have patience and make sure you have a doctor that is willing to listen and investigate.
Crp is c reactive protein and esr is the sedimentation rate. There are times when these can be normal and you still have inflammation. Do you have any body aches or fevers( especially in the evening)? The low ferritin could mean you are not absorbing iron well.

Post Edited (Labradorite) : 11/14/2016 7:26:03 PM (GMT-7)

Posted 11/15/2016 2:52 AM (GMT 0)
Hi, thank you for the reply!

It's nice to know that someone else has the same fear, haha! I'm trying really hard to be assertive and be an advocate for my own health... I'm glad that you finally found a great doctor. Thankfully, my PCP is really, really great. She does always ask for my opinions and suggestions. It's quite refreshing actually.

I don't have anything that sticks out regarding fevers or body aches - if so, very very vague.

That was my thought about the ferritin, difficulty absorbing. My dietitian picked up on that, so I wonder if that is what provoked my PCP to order a GI referral.
Posted 11/15/2016 3:34 AM (GMT 0)
The thing about Crohn's is, it's possible to have normal blood test results and still have Crohn's - some people's inflammatory markers don't rise, not even with severe infection/inflammation. I'm not saying you do have Crohn's, but normal blood tests - in the presence of other suspicious symptoms - don't rule it out.

That's why I banged on about the need for a colonoscopy and small bowel test. It's the only way to find out what's going on inside your intestines.
Posted 11/23/2016 9:44 PM (GMT 0)
Hi everyone!

Just wanted to give an update. So I finally worked up the nerve and scheduled an appointment with a gastroenterologist. He was a very, very nice guy. Seemed caring and listened to me. I'm also officially now down 60 pounds. He said it wasn't an immediate need, but recommended an endoscopy/colonoscopy and CT scan and x-ray. He wasn't exactly sure what it could be, but he was willing to check from a gastroenterologist point of view. I didn't schedule anything yet, said I wanted to think about it and talk it over with my parents. I'm a bit apprehensive about it - I'm worried it may be something, but also worried it might be nothing...

Just thought I'd give an update. Any suggestions?

Thank you!
Posted 11/24/2016 12:40 AM (GMT 0)
I would do the colonoscopy/endoscopy first before the CT and x-ray. I only suggest that because you would avoid radiation. That may not seem like a big thing now, but if you ARE diagnosed with Crohn's or UC, you will most likely have a LOT more scans in the future. I'm only 30, and I'm honestly surprised I don't glow in the dark by this point.

Also, have you done any stool samples? Sorry, can't remember if you said. You could have picked up a parasite or something.
Posted 11/24/2016 1:38 AM (GMT 0)
Hi, you have a good point with avoiding excessive radiation. The gastroenterologist doesn't think it is UC or Crohn's but said it could be a unique case. Just wants to check if GI tract is OK.

And no, I haven't had a stool sample. No mention of it.

Thank you!
Posted 11/24/2016 1:54 AM (GMT 0)
Okay, then DEFINITELY get a stool sample first, then scopes, then scans. :)
Posted 11/24/2016 2:08 AM (GMT 0)
Yep, blood tests first, then stool tests, then scopes, then scans.

Blood tests should include CBC with differential, metabolic panel, liver panel, ESR, CRP, iron capacity, vit b-12, folate, and celiac panel, possibly more I can't think of right now.
Posted 11/25/2016 5:28 PM (GMT 0)
Hi, thank you both for the responses. Odd that none of my doctors have even mentioned a stool sample.

And I have had a lot of those blood tests including a CBC with diff, metabolic panel, liver panel, ESR, ferritin only, and one celiac blood test (I know there is a full panel). The gastroenterologist said that there wasn't anything that pointed to a B-12 or folate deficiency...

Thanks for your help!
Posted 11/25/2016 6:07 PM (GMT 0)
Sometimes stool samples get overlooked because the doctors assume someone else is going to do it. The GI probably assumed the PCP did it, and the PCP probably assumed the GI would order it. Whenever you start working with a specialist, things like that happen. That's part of why I love this forum - it helps me when others can point out what might have gotten overlooked that I wouldn't think about asking. :)
Posted Yesterday 12:23 AM (GMT 0)
I would recommend doing some basic tests like
CRP, folate, b12,
and a new iron panel (ferratin, assay iron, transfern, binding capacity)
also stool tests for fecal calprotectin or fecal leukocytes, and fecal RBSc, ova and parasites, c. diff, salmonella...

MRE is a test that is more bowel specific and does not require any radiation
a colonoscopy is a good idea

good luck!
Posted Today 2:47 PM (GMT 0)
Thank you for the suggestions! Funny because none of the doctors I have seen have mentioned any of those... only the gastroenterologist said that there wasn't evidence of a deficiency.

Interesting test that you mention. In the notes from the doctor, it says "gastroscopy and colonoscopy and some form of xray testing such as a small bowel xray and a Cat scan" I wonder if that's what he means?

Anyways, thank you!
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