Abdominal pains/IBD/IBS

[Montey25]

I have been sick going on 12 years. I am now 34. In the past year I have gotten worse. Had my first colonoscopy 10 years ago, cant remember much expect inflammation was found where the small and large intestines meet. Over the years I went to the hospital countless times just to be sent home.
Dr said my gallbladder was not functioning fully so had that removed at 27, did not stop my symptoms.
I also developed problems with my vision, double vision, floaters, blurry, etc.
Over the years I have gotten worse
Recent symptoms:Symptoms to date: extreme fatigue (unable to get out of bed), appetite gone, pain and pressure in abdomen and under ribs, nausea, dizziness, constipation, diarrhea, burping foam and food, extreme bloating causing severe pressure against abdomen and ribs everyday, all day, sore throat on and off, feeling of gas that severely bloats abdomen but will not pass, sharpest pain under right rib, tenderness under sternum, spasms under right rib, tenderness near belly button
Vision impairment, muscle spasms, bottom of right foot burning at times, cold sensation on face (gone now)

Recent test:5/14/09 – Colonoscopy/EGD,  Findings:mucosal chronic inflammation, Sections of the specimen labeled "terminal ileum biopsy show mild to moderate chronic inflammation represented by a somewhat increased number of lymphocytes lonw with a few bland appearing lymphoid aggreagates. Few scattered eosinophils and neutrophils are also noted.
Diagnosis:(per report) specimen labeled "antral biopsy" mild chronic inflammation present
                                Specimen labeled "terminal ileum biopsy" mild to moderate chronic inflammation with few scattered neutrophilis and eosinophils
Dr said he would of thought to diagnose me with IBS but there would be no inflammation present.
(Possible Colitis per DR) Placed me on Lialda 1.2gm 2x a day. Biopsy was negative.
06/09 - Returned to Dr.  no change in symptoms after med. Placed me on a steroid pack (no change)
6/17/09 – Small bowel series of the Abdomen  (Inflammation in stomach)
07/09 – Returned to Dr.  no change in symptoms, he changed meds to Asacol and recommended exploratory surgery.
08/09 – in TX for 2 weeks (husband is stationed there). Could not get out of bed, extreme fatigue, no appetite (lost 8 pounds) pain and pressure in abdomen and under ribs, nausea, dizziness, constipation, and diarrhea, extreme pain, extreme bloating causing severe pressure against abdomen and ribs, vision problems, red blood  after bowel movement(possible hemorrhoid)
Hospital visit twice in TX. 1st visit, all was normal per hospital (hahahahahaha)
2nd visit – slight pancreatitis,
Placed me on a steroid pack. (did nothing)
08/09 – Consulted a new gastro, he reviewed bloodwork and test results and said he feels I do not have colitis or chrons. He ordered another Colonoscopy/EGD.
After procedure, he said there was no inflammation seen. Biopsy came back negative.
Diagnosed me with IBS. I told him I have lost all energy and severe nausea and he said this has nothing to do with IBS.

So here I am today bound to my bed with no energy, constant nausea, constant abdominal pain.
Weird thing is I caught an intestinal infection in 04 and caught campalabactor jejuni in Nov 08 which required hospitalization. At that time I was tested for Celiac - Negative. But hosptial called me back and said they did a blood test that confirmed positive in the range of chrons/colitis, mind you this was before my 2 colon/endo. My liver and pancreas test and all blood work comes back pretty normal.
My crp on blood test usually run high (signed of inflammation)
My Lipase was 17 (22-51)
Can someone please help me? What are the doctors missing? I am in so much pain and so sick work and school are on a hold.

[Montey25]

I have been suffering for about 13 yrs now gastric and multiple other symptoms. My blood work is usually normal. Recently My Saccharomyces cerevisiae IgG came back 34.9 (above 25 is positive) and IgA 48.5. I aslo am positive for eosinophil's. My gastro diagnosed me with Chrons cause of the IgG and IgA but is confused cause I am positive for Eosinophil (which is a food allergy) I have been Entocort for 2 months. It worked for a month and now I am sick again. My WBC is always normal, dont run a fever, rarely diarrhea, mostly constipation, never vomit, have vision problems, and so on. Could this be Celiac and not Chron's?? What should I do next. Had all test including the capsule camera that never left my stomach for 8 hours so no luck with that. All other test come back negative beside minor inflammation where small intestine and large meet. (1 out of 5 colonoscopies reveled that). MRI of brain Neg. CT Scan and MRI of abdom neg. What next?

[Montey25]

Koshin6
I go to the Neuro tomm. I know it is possible for me to get MS but according to research by the MS Foundation my chances if my mom has it are 3%.Yeah I have thought maybe I have it for the last 10 years or so, even before my mom got diagnosed. What are some of the same symptoms you have? I realize everyone's symptoms are different. Years ago I had an MRI and vision test and it showed nothing at the night mind yoiu that was 10 yrs ago too.

[koshin6]

I read your post re: abdominal pains and when you mentioned your mother's MS It rang a
bell. I have MS and have many of the same symtoms. You might want to bring the MS
concern to your doctor as a possible cause of your problem.

[Montey25]

CalGal - thanks for the insight. I got a new physician that has recommended me to an all female gasrtro practice which I thought was pretty cool. I am going to spend the next couple of days getting all my medical records from the last 2 years sent to the new dr and gastro. Something has to give at some point. I figure someone will figure this out soon or I will die. LOL. I think my biggest problem over the years is not sticking to the same drs, moving, frustration, and all. Another reason the doctor who did my last colon says he does not think I have Chrons/Colitis is because my bloodwork is not similar to someone who has it. Meaning my white blood cells are fine and I am never anemic. My mother has MS and it took 7 years for her diagnosis so I am hoping there is hope for me still. Thanks. What do you think about the blood work situation?

[CalGal]

Montey, I know this may sound a bit strange, but what you're describing sounds a lot like Crohn's disease with a bit of celiac disease mixed in. I know you were tested for celiac, but most of the tests for celiac are pretty terrible about giving you a true read on the disease. If they didn't do the full blood test (IgA/IgG gliadin, IgA total, transglutaminase and endomysial tests) they won't get a true result. And even at that it could turn up negative since the blood tests are not that great to begin with. The biopsy isn't all that great either. It can easily miss the evidence since most places say that you have to have greater than a score of 40 to be diagnosed celiac (score = greater than 40 IEL's [intraepithelial lymphocytes] per unit area). Well, if the normal end of the range ends at 20, and celiac is at 40, what happens between 20-40? Most places call it negative when it's not.

There's a lot of gene linkage between Crohn's and celiac, so you might want to consider trying a gluten-free diet and see if it's of help. It can and does help some with Crohn's disease.

I think you're unfortunately in that 'dead' zone before some doc actually gets a clue that you actually HAVE Crohn's disease. That, unfortunately, seems to happen to quite a number of Crohn's patients. I'm not sure what the 'mean' number of time it is to diagnosis, but from what I've read that some Crohnies have written, it can be a number or years. It sounds like you may be going through the same misery in trying to get a diagnosis. With the recent docs, have you considered asking for a test such as the Serology 7 from Prometheus Labs? Most with IBDs at some point will start to put out some specific markers for either Crohn's or U.C. and that test has a fairly good reputation among docs even when the colonoscopy is negative - although I wouldn't exactly call your history of colonoscopies 'negative.'