Help! Newly diagnosed with Crohns! Thought it was celiac for 5 years!

First off, welcome to HW I'm glad you found us! The folks here are a tremendous source of support and information.
I'm sorry you've be diagnosed with this darned disease but at least now you have an answer and a direct for the docs to go. Have they started you on any meds as yet for the crohns? And are you seeing a crohn's specialist? I know we don't all have access to the docs we need or would like but my experience has been that an IBD specialist is who we need to see. You are so young to have been through so much already, ((HUGS)) and don't ever feel any question is too dumb to ask here. What you might think is a dumb or gross question is probably just normal for us ... lol lol.

Hi MissL and welcome to Healingwell. First off I would ask you to take a deep breath. And while this is a chronic and incurable bowel disease, one thing it is NOT, is a death sentence. Once your doctor finds the right treatment for "you", you will be back onto the road to better health.

Diet is very individual to each of us. What one can eat, another may not. I suggest you keep a food diary of which foods agree with you and those that do not. I personally follow a modified low residue diet all the time as this works best for "me". Others follow the SCD or Makers Diet.

As for the steroids they are considered a necessary evil with this disease. The help to quiet the inflammation down quickly and to give time for your other meds to kick in. Again welcome to the forum, and we look forward to hearing more from you. Hugs!

I just wanted to say welcome to the forum. And Im only 26 and I've had Crohns Disease for 8 and a half years now already. So I know what your going through at a young age. And believe me its tough, but you actually get used to it, and sort of take pride in the knowledge you gain. Others around you wont have that knowledge as you do, you'll get to know your body better then any doctor could ever tell you about you body. So if something doesn't seem right then don't accept it.

Just hang in there, and feel free to slip me any questions you have especially since both of us were so young to have been diagnosed. You could just start a thread to me if you have any questions.

Good luck.

A GI is basically the same thing as a Crohns specialist although there are GI's that deal specifically with IBD. And there really isn't a blood test for Crohns disease. You can get a blood test and it can come back with elevations in certain areas like inflammation but thats not always reliable. Plus if your not flaring there would be no inflammation. And then there are people like me that when I flare blood tests rarely show it anyways, because I always start feeling bad with pain and vomiting and no appetite before there is any inflammation shown on blood work.

I've never used a food diary, not once, but some people swear by them. But that's because for me No food bothers me unless I already flaring, when I'm not flaring I can eat anything and everything I want. But when I'm flaring things like milk and ice cream bother me, sounds like lactose things bother me right? but thats not the case because I can eat things like cheeses just fine, so milk and ice cream are what I call the 'hard' lactose foods.

A lot of people are misdiagnosed with UC, and then again a lot of people actually have UC that then turns in Crohns disease. You really cant blame a doctor because a lot of them specifically look at tests such as blood tests to determine diagnoses which in my opinion is a mistake, to me you listen to the patients symptoms more then you go by what ANY test says. But about the 'blood test for crohns' thing again, the only real sure fire way to test for Crohns is a biopsy from a colonoscopy, thats why its always bothered me how people on here say they've never had a colonscopy but they've had plenty of sigmoidoscopies which is like a colonoscopy but instead of going through the entire colon it only goes through about 1/3 of it...sounds like a waste of time to me and if you dont pay anymore co-pay or if you have no co-pay then it really does make no sense to get one of these when you can do basically a 'full test' with a colonoscopy and it takes maybe 5 minutes longer.

If you were throwing up feces it sounds as if you had a blockage. How did it get fixed? You didn't have to have surgery? Maybe it was just a narrowing then and steriods or something cleared it up because if it was a true blockage I'm willing to bet you'd have to have surgery to remove that portion of bowel.

Well good luck and like I said if you want to ask me anything specific shoot me a new thread and just title it ' Crohnspatient' or something like that.

MissL, I'm so glad you had that pill camera. There is no way to do a biopsy of the small intestine that I know of - it seems like the pill cam is a great way to detect inflammation there. Annoying that your DR told you it was "just stress" for all thos years. That really irks me. On the other hand, stress is an absolute aggravator of any autoimmune illness, and maybe especially one that affects your gut. The brain-gut connection is a strong one.

The poor nutritional status is common among Crohn's patients. The small bowel is where most of our nutrients are absorbed, so if yours is inflamed, it's not working that well at its main job. From what I've read and experienced, the main issues here are to look at vitamin D, iron, B12. Lactose intolerance is common among Crohn's patients (and really, all adult humans, LOL) to some degree - I believe a lot of lactase is made in the ileum, which is a prime site for Crohn's inflammation. More inflammation ==> less effective lactase production ==> more problems digesting lactose.

One comment to Crohnspatient - there is not a lot of lactose in [hard] cheese and yogurt. Soft cheeses (like mozzarella, brie, etc) have more lactose than cheddar, swiss...you know what I mean.

There isn't a blood test for all autoimmune diseases. Perhaps you're thinking of tests they run for lupus and rheumatoid arthritis. Crohn's is generally considered an autoimmune illness but does not involve elevated immune factors in the blood. Elevations of C-reactive protein and "sed rate" are typically what is found in Crohn's patients.