Negative result for crohn's test

Can any one help me? I have been dealing with all the symtoms of this disease and they have done all of the standard tests and it all comes back negative. No one knows what is wrong with me and I think I'm going crazy. My family doc thinks this is also what is wrong with me but with out a positive diagnosis she cant treat me. Im on Lomotil 5 times a day and that does help a little bit. Im a 28 year old female with rheumatoid arthritis and they cant find out what is causing that either. My doctor put me on a month of prednisone and its the last week of that and I have never felt so good, no stomach pain, no frequent bathroom trips, no nausaua, I almost feel "normal"
I have seen 3 gastro docs and they are not concerned at all they say a 50# weight loss in 10 months is okay because I'm at the goal weight now. If any one can help me or give me any information on where to go from here that would be great! Thanks in advance.

Comments for Negative result for crohn's test

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Yes
by: Anonymous

I tested negative for both the Prometheus and Lab Corp tests but biopsy was positive as was cat scan and mre. Not to mention all of my symptoms. One dr tried telling me it was nsaid induced colitis even though I absolutely do not take nsaids as I only have one kidney. 3 days after I saw him, I ended up being hospitalized with a bowel obstruction from severe swelling and inflammation. When I got out, I called him and he had the nerve to say that the radiologist who read my cat scan was wrong! WTF? So, I took a cd of the cat scan to him, as requested, for him to see for himself. I never heard back from him again. I sent him emails and called his office and still nothing! Guess what? Been hospitalized two more times for the same thing. Had an enteroscopy done in February and that Dr said he could see disease as soon as he got in there and that my bowels ate in horrible shape.
Still don't use nsaids, btw.
negative as well
by: Anonymous

I also tested negative from the Promethius test, as well as some others. I've been to 2 gastros that confirm its Crohns based on family history and inflammation from my colonoscopy. I guess about 10% will test negative even if they are positive. I was struggling with it for about 8 years though before any real inflammation showed up on my colonoscopies. They kept saying IBS until a few years ago when I was flaring really bad.
Negative result for crohn's test
by: Lydia D.

There was a poster on another forum (years ago) who reported that she was not well. Her gastroenterologist said that the colonoscopy was clear and that her Crohn's colitis was in remission on her maintenance medication. However, she needed a gynaecological operation and when the gynae was operating he noticed Crohn's on the outside of her colon.

The disease, unlike ulcerative colitis, starts in the submucosa of the intestine and it can move in all directions. Crohn's on the outside of the intestine will only be detected by laproscopical means.

A doctor giving a seminar said that the Crohn's granulomas formed can bleb off and move around the body (like metastases) and this is what causes inflammation in other parts of the body.

It took me a few decades to get a Crohn's diagnosis. I empathise and hope that you find a decent doctor. The fact that steroids work indicate that there is inflammation in the body somewhere. A friend of mine had to jump through hoops and was almost blind on her diagnosis of arteritis temporalis. It is my experience that doctors are quick to diagnose patients as psychosomatic - especially female patients.

I can only suggest that you keep a food/mood/symptom/medication/supplement diary and use this to demonstrate to the doctors how ill you are.

You can use the following scales:

CDAI
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm
Same difficulty
by: Lisa

I too have had nothing but negative test results. I've had D for 12 years, tendon degradation, arthritis, fatigue, and, oh the abdominal pain has sent me to the ER on several occasions. After seeing the same ER doc twice, he decided to treat me as a IBD flare and pumped me full of steroids and fluids (I felt almost normal!). After switching primary physicians (tired of being told it was fibro or a depleted pain tolerance because of neg results), a referral to a new GI doc, several retests (all negative), losing my job and health insurance due to living in the bathroom, I went to my last appointment furious. Healthy people don't live like this!!!!! My new specialist agreed and gave me a trial of Lialda (didn't work). She gave me an rx for Entocort and told me to seek a Canadian pharmacy due to the outrageous costs in the US. I'm hoping to be "normal" again soon. I wish I could offer more than empathy for your situation. Maybe they could start you on a trial of a 5-asa? Something?
Negative result for crohn's test
by: Lydia D.


They should have tested you for Coelic disease (you can do this yourself - just eliminate gluten from your diet for a couple of weeks and see if it helps).

They should also have tested for lactose/fructose/sucrose/maltose intolerances. You can do this testing yourself: sodas contain high fructose corn syrup, malt beer contains maltose, sweets contain sucrose (table sugar), etc.

Could your arthritis be exacerbated by allergies or vitamin deficiencies?

They should check you for allergies - steroids would show positive effects here.

They should test your vitamin status. Caveat: the vitamin status of the blood does not necessarily reflect what is going on in the various organs.

There is still a lot to do towards getting a diagnosis. Crohn's is not ruled out, but there are hundreds of other things that it could be. I suggest that you look at dietary intolerances and allergies first. Keep a food/mood/symtom/medication diary and then go back to your doctors with new information. I was ill off and on for over 25 years before I was diagnosed with ileocolic Crohn's.

I suggest that you discuss the above and the following with your doctor:

- cut out milk, cheese, cream, etc. for a few weeks and use lactose free products instead,

- cut out gluten products for a couple of weeks. Caveat: most aromas contain gluten,

- take fish oil capsules or increase your consumption of oily fish,

- take a vitamin B-complex for pregnant ladies for a few weekts,

- take daily vitamin C,

- take zinc, iron, magnesium, seleneium supplements,

Do not change everything at once, but approach it scientifically and record everything in your patient diary. Food allergies/intolerances and/or vitamin deficiencies might explain your symptoms. You really do not want Crohn's disease on top of everything else. However, RA and CD are frequently found together due to overlapping autoimmune disease genes.

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