Hi, I'm new here.

I'm 23 years old & I've been suffering with mysterious and debilitating symptoms for several years now, and landed here to try & figure out what it could all possibly add up to. My suspicions were either Crohn's Disease or Celiac Disease. I decided I'd post here to see if anyone who is more experienced than I thinks this might be Crohn's, or sounds like symptoms they had prior to their diagnosis. (As of yesterday, I've been informed I do not have Celiac because the biopsy was negative..however, I've been eating GF for approx. 3 years now).

For years I have been plagued (which is the understatement of the century) with mouth ulcers that appear at random. At their worst, I had over six (6) lesions in my mouth at once. It was horrible. I can't eat, speak, or brush my teeth properly when I have a flare up of these mysterious mouth sores. I've lost weight dramatically in the past. All I can do is use my mouth solution "magic mouthwash" of basically lidocane that was prescribed to me to numb my entire mouth for a little while. They last 7-10 days. In 2014 I had randomly developed a bodily rash that itched, burned and was painful to the touch and was mainly on my arms and legs. I went to my allergist who did a general allergy blood panel (egg, pea, wheat, corn, tomato, chicken, milk, etc), which came back negative, or normal. My allergist told me he thought I had a "gluten intolerance" instead, which wouldn't show on a blood panel, and prescribed a gluten-free diet, which I've been adhering to since then.. so, about three years now. Well, now all my symptoms have returned, progressed, and then some even while following my GF diet.

In Sept, I went to my GI doctor who thought I might have GERD and gave me Omeprazole, 20 MG. This worked at first for my burning sensation in my chest and stomach every time I ate. After a few months it stopped working so I had another appointment set for February with my (awesome) GI doctor. Between that time I had maintained horrible symptoms such as: stomach pain, irregular bowel movements that are either diarrhea or constipation, sometimes in the same sitting. My bowel movements are frequently greasy, and float (Sorry to get so specific, I'm desperate here), which I learned shows in inability to properly absorb fats in one's diet. Severe fatigue, I can't stress this symptom enough. I can't even walk up my stairs anymore without feeling short of breath, like everything has been drained of me. I have heart palpitations that were severe years ago, and have calmed down significantly now but I experience them every.time. I eat. I eat, and then my heart races and then comes the stomach pain in the lower right abdomen and upper left and right abdomen specifically. When I first had these palpitations I went to the DR and they thought I had anemia, and were floored my CBC results didn't show anemia. I have low blood pressure, and I can feel when it dips because I see black spots and feel like all my blood rushes to the floor. My low blood pressure has been medically recorded. After I had my endo last week, the nurse checked it at least twice because she couldn't believe it had fallen that low. I've been maintaining a low-grade fever for weeks now, which I learned is common in Crohn's. My diarrhea is sometimes bloody, there's blood when I wipe myself oftetimes -just a little, but it's enough for me to notice. My constipated bowel movements have evidence of black spots on it and is darker in color, which I learned might be deeper GI bleeding. I have such horrible stomach bloating and feeling of fullness every time I eat, no matter what it is or how much of it I eat. I've been eating less and less because I get full so prematurely, which I hadn't experience before in my life. When I burp, I always taste the food I've eaten, or burp up my own vomit. It's disgusting and it's ruling my life. There's more symptoms can't even remember, but it's the regular GI pain symptoms you could probably imagine and fill in my blanks yourself.

My GI doctor performed an upper endoscopy on me last Friday, and the gross images were normal. He also took a total of 6 biopsies from the stomach and duodenum, which were negative for bacteria and did not show Celiac Disease. My question here is this.. Is it possible to have Crohn's and not have it appear on the endoscopy? Would my Doctor have to had specifically test for Crohn's or would it have just showed? I haven't ran the possibility of Crohn's by him, because I figured he's the doctor and even if I might think I have that, I shouldn't put ideas out there for him. I'm fearful I now should have also gotten a colonoscopy, or some other test. He's planning on giving me a Lactose Tolerance Hydrogen Breath Test next to measure bacteria deeper in my intestines basically, and I'll probably be taking either steroids, antibiotics, or both. I'm not sure why, I'm waiting on his return phone call today.

So, does this possibly sound like Crohn's to anybody out there on this forum? If so, can anyone give me any tips on how to go about a diagnosis? Should I blatantly ask my doctor if he could consider it as a diagnosis? Does it typically take this long? I'm almost discouraged my endo biopsies showed no gross findings because I just want a diagnosis so I can work toward my healing. I'm obviously really young, and at this age I hate not feeling "normal." It's now driven itself to the point where I'm really not eating anything anymore, and I've heard horror stories about how some lost 20+ lbs.. I can't even afford to lose 5-10 lbs.

My GI is great, but I hate playing this waiting game.. Please help me.
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