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New Here. Was Told I Had "Possible Crohn's" And Have Every Symptom

Hello everyone. I am new here and I was recently told by my GI Doctor that I had possible Crohn's. My biopsy from my Colonosopy/Endo came back normal, but my recent blood work still showed Celiac Disease and possible Crohn's, although nothing was explained to me (what are the Gliabin Peptide ab, IgA levels?). I've already been diagnosed with Celiac Disease and I am having gallbladder issues right now (it is likely going to be removed). I also deal with severe chronic left-sided head pain from a dislocated jaw and neck pain, eye pain - it is 24/7. Due to my gallbladder and Crohn's, I can't treat these with any type of pain meds at this time...

I now have food allergies, including potatoes, wheat (Gluten), corn (most pre-packaged gluten-free items contain corn of potatoes, of course), carrots, peanuts, etc. I've never had a problem with these foods in the past.

My main concern right now is that I am losing a ton of weight and feel terrible. I don't know how to keep it on. Every type of protein drink, including Brown Rice Protein (it has vegetable gum - is this a problem?), hurts my stomach severely. I am 5'10" and now weigh only 116 pounds. My twin brother asked my GI doctor, "What is considered a dangerously low weight?" His response was, "Well, there's no such thing as a dangerously low weight."

I have no treatment plan from my doctor's office. I will be doing a HIDA Scan and series of bowel tests on Thursday, then Friday. I am currently eating very healthy, small portions around 4x daily, which include brown rice (which I do best on) with salad or mixture of peas/green beans. I also have tuna at times, but the stomach pain still gets severe even on these simple foods.

I have read I need to be taking supplements, like digestive enzymes. I don't know which ones to take or where to buy at a good price. Any suggestions would be greatly appreciated.

Anyway, the severe head pain and lack of sleep, plus blurred vision, isn't helping. I've been diagnosed with POSSIBLE Crohn's (whatever 'possible' means), Celiac Disease, but I don't have any treatment plan except for a pamphlet from the doctor.

Would really appreciate some advice from anyone that has experience or would just like to give their opinion.

Thanks.
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, KnightRobby!

Has your doctor mentioned doing a capsule endoscopy (also called a pill cam) to see your small intestine? It sounds to me like there's a chance something more is going on in there. Does your doctor have any further testing planned to get you a more definite diagnosis? It sounds like that should be top priority.

Have you ever had blood in your stool, if you don't mind sharing?

As for your questions about weight gain and supplements, you might want to check out the Diet, Fitness and Supplements section of the forum, here.

How long ago did you quit eating gluten?
 
Thanks for the response. No, he hasn't mentioned a capsule endoscopy, but he is proceeding with a detailed small bowel test which takes 3-4 hours and the HIDA Nuclear Test (which takes 2 hours).

I don't know if I have ever had blood in my stool. This all started near Christmas and I recall half my stool was very dark.

I am still on a Gluten-free diet at this time. I have been for quite some time.

I don't know what to do about the weight loss at this time, as nearly every protein drink is causing severe pain in the left side of my stomach (lower colon region).
 
welcome to the forum and i am sorry u are having swuch a hard time, I hope things improve and you get put on a proper treatment plan x
 
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