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Crohn's Disease
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Posted 10/15/2019 6:43 PM (GMT 0)
Friends,
I feel like I am chasing my tail, I hope you all can help. Long story short, I have been dealing with unexplained symptoms for years that doctors cannot explain, the most bothersome being weight loss with inability to gain and hair loss/thinning on my head and body. No matter how much I eat, nothing sticks. I get headaches, different aches and pains that come and go, skin blemishes, fatigue, etc... I went to a new doctor today and she wants me to repeat the small bowel follow-through, I had one done 5 years ago. It was normal then. She said it's not uncommon to have a bunch of systemic symptoms like I have rather than the clear-cut tummy issues. Can anyone speak to this? Has anyone had similar symptoms and been diagnosed with Crohns? Thanks so much for reading, I appreciate the help. Be well.
Posted 10/15/2019 8:38 PM (GMT 0)
Hi there, I am going to guess this is a primary care dr that recommends the small bowel follow through. If this dr is thinking possible crohns you should be referred to a gastroenterologist for an upper endoscopy & a colonoscopy with biopsies for both tests. A gi can get a visual with the camera & f course the pathologist can read the slides. This is the gold standard for IBD testing. I would not rely on a small bowel follow through for a diagnosis. Both of these tests can be done on the same day to make it easier on the patient.Back in the day when drs were doing the small bowel, I saw it with patients that already had a diagnosis. I had one done a couple of years after my original diagnosis.

From what you are describing symptom wise nothing jumps out to indicate crohns. The hair loss/thinning can be due to poor nutrition. I wish I could be of more help, but I would ask for the scopes.

I hope you can get some answers, 5 years is a long time.
Posted 10/15/2019 8:54 PM (GMT 0)
Hi Susie,
Thank you for your reply. You are right, it is a primary doctor recommending this test. I have been to multiple GIs in the past and I've had several endoscopies and colonoscopies, all normal. I think this doctor is thinking that maybe it didn't show in the small bowel a few years ago but now it might. She thinks this is an autoimmune GI issue so it looks like she really zeroed in on Crohns. She said she had a patient who presented with general systemic symptoms and not with GI symptoms for years. I've been dealing with these symptoms longer than 5 years, I am at my wits end, I could cry. I do cry! I appreciate you writing, maybe I should just bypass this doctor and go back to the drawing board with the GI. I hope you are doing well. Thank you.
Posted 10/15/2019 9:21 PM (GMT 0)
One idea, if your PCP thinks it's worth it, is to start on prednisone and see if that helps. If it does, then it is defintiely something autoimmune.
Posted 10/15/2019 10:02 PM (GMT 0)
Scifigal,
Thank you for your reply. Another one of my doctors said she wanted to try me on a low-dose steroid to see if that would help my symptoms. She said, however, if it worked, we wouldn't know what we were treating. When I mentioned the idea to another doctor, he said that steroids will make everything feel better, no matter what. So then how would we know if it was working? I am so desperate for an answer and to just feel normal. Maybe that is the route to take. Thank you again. Be well.
Posted 10/16/2019 12:36 AM (GMT 0)
The small-bowel follow-through is an old test. It doesn't give nearly as good of images as a CT enterography or an MR enterography, both of which are far better at detecting any manifestations of Crohn's disease or any other inflammatory conditions in the bowel. (They're also more expensive.)

The capsule endoscopy is also a more appropriate test for finding small amounts of inflammation or ulceration in the small intestine that can be missed with other tests. (It, too, can be expensive.)

But before any of those are done, first should be extensive blood tests and then stool tests.

What blood tests have you had done?

Have you been tested for celiac disease (via blood tests and/or biopsy from your upper endoscopy)?

Have you had any stool tests done (such as fecal calprotectin and occult blood)?

Have you had blood tests for crp? ESR? Hemoglobin? Iron stores?

ANAs (anti nuclear antibodies)? ANCAs (Anti-neutrophil cytoplasmic antibodies)?
Posted 10/16/2019 9:18 AM (GMT 0)
Hi beave,
Thank you very much, very helpful. I have had a barrage of blood tests and have been tested several times for celiac, both in blood and biopsy. I'm having another stool test done but I believe this is for fecal fat this time (again). I just recently had the ESR, CRP, and CBC - hemoglobin was normal, ferritin was borderline low at 18 but doctor didn't seem concerned about that. ANA has always been normal. I look pretty good on paper but clearly something is going on. I am often dismissed as "it's in your head" because my tests come out normal for the most part. I fear this will happen again with this doctor. But I'm not going to proceed with the Small Bowel Follow Through. I'm going to ask if I can have the capsule endoscopy, I hope she will oblige. Thank you again for the help. I appreciate it smile
Posted 10/16/2019 9:11 PM (GMT 0)
ANAs are normal but what about ANCAs?

And do you know if fecal calprotectin was one of the stool tests you've had done?

If you're going to do imaging tests of the small bowel, you REALLY should do an MR enterography or CT enterography instead of the small bowel follow through. That test hasn't been used for Crohn's diagnosis for a good 15 or 20 years.

One problem with these imaging tests is that even if they do find some inflammation, you'd still need more information to know for sure that it's Crohn's you have and not some other inflammatory condition.

You could also consider the Prometheus Labs IBD blood test. Insurance doesn't always cover it, but it might be worth a shot to see what it says. It's not perfectly accurate, but it's fairly good.
Posted 10/17/2019 8:03 PM (GMT 0)
Just wondering about your b12 levels as low can cause hair loss and fatigue. May be worth getting tested or trying a supplement (spray us good as easily absorbed if you have tummy issues) or you can get injections. I also wondered if you have tried gentle iron supplement to see if upping levels helps.

I had asymptomatic crohns but blood tests showed high inflammation - if your CRP is okay then there isn't systemic inflammation so you should be safe on the crohns front and as steroids are about reducing inflammation so why try them (given the nasty side effects).

Also, my son is gluten intolerant, not enough to flag up as celiac on blood tests but enough to have a bad tummy reaction to wheat, within a day or so of gluten free diet he was fine, so it us an easy try-and-see to go gluten free for a few days and monitor if any improvement (be aware it's in all kinds of things you wouldn't expect so you have to check labels).

Good luck and I hope something works out.
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