What else causes non caseating granuloma's?

I used to be very active on this board but haven't stopped by in some time. After 6 or so years of being sick, I was diagnosed with sarc by a medialstinal biopsy. The results state "non caseating granulomas consistent with sarcoidosis. I thought this was a DEFINITE diagnoses.

I was getting remicade infusions every 4 weeks and treating myself with cannabis as I am a legal patient in the state of Mi. I was doing ok, still had daily issue's but I managed much better than I had before.

We believe I am now building up antibodies to the remicade. I thought I kept getting a really bad flu since I know it lowers my immune system. The last time I got this "flu" was two days after my last infusion and I needed to be hospitalized due to dehydration and extreme diarrhea.

I got to talk to a LOT of doctors. A couple of them are questioning my sarcoidosis diagnoses saying there are other things that can show as non caseating granuloma's.

I'm not the text book sarkie, mine started with miscarriages, extreme joint pain and swelling, chronic uveitis, migraines, neuropathy, blood clots, gi issue's, etc. I never really had any cough, might have been due to all the pain pills I was on as they can suppress a cough though.

While I was just in the hospital they did both an endoscopy and a colonscopy. The endoscopy showed chronic gastritis which I already expected. They took biopsies from both ends and are sending them out for special testing.

They are concerned about a very rare bacteria called whipple. Apparently this test can take a while and it isn't in yet. I was dazed and confused in the hospital and they did say there were other things that can present with non caseating granuloma's but they really wouldn't elaborate much yet until more tests come back.

I do have a very good sarc doctor, probably the best in the state of Mi. He was on vacation but I will see him tomorrow to see if some of these other tests are in or not.

I was wondering if anyone else has been told they might not have sarc after all or if anyone knows what else could be diagnosed by non caseating granuloma's. They are testing again for celiac and chrons disease. Any info on that or if you have experienced an allergic reaction to remicade, how that presented itself, would be greatly appreciated!

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I was living in Ca when I first got sick. I had a mold problem in my apartment and was traveling a lot to Az, NM and Mexico. When I did my biopsy I got a diagnosis "consistant with sarcoidosis" whatever that means. My pulmonist stuck with that and did not look any further. I never had a cough either. I had fatigue and breathing issues. I have also been diagnosed with Asthma. My chest Xrays remain the same as they were in 2003 when I was diagnosed.
Strange I had a friend who used to go up in the Santa Fe mountains with me on vacation and she was diagnosed with Valley Fever. She had my same symptoms. When I asked about that I was told to keep with my biopsy results and not go fishing for the unknown. The treatment for all the granulomas diseases is different. I would be real pissed if later I found out I had been diagnosed wrong but I don't want another biopsy. I can't find a doctor here in Mi that will look any further.

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I'd be pissed if they told me to not go fishing for the unknown! Jeepers, I think a lot of these doctors are just over worked and don't really care.

I did see my sarc doc this am and all the biopsies they took came back negative, I forget what all they tested but I know it included celiac, chrons and whipples.

My remicade level came back at 40 yes forty times higher than what it should be!!!! I am toxic as hell and no wonder I ended up in the hospital! I am not showing any antibodies though for the remicade so we are taking a remicade holiday for 8 weeks and will try a smaller dose less frequently. I really don't have any other options and he told me as much.

Despite the toxic dose of remicade, my inflammation markers were also double.

He said I'm probably as good as I am ever going to get and with having to reduce the remicade, I may get worse. At least he doesn't sugar coat it.

I'm going to try making Rick Simpson Oil....if you are curious, google Rick Simpson and Run from the Cure. Its basically a very high concentrate of cannabis that ends up like a black paste. It has been proven to cure certain types of cancer and has saved diabetics from losing limbs and other incredible things.

Since there is no cure for sarc, it obviously won't cure me either but cannabis is a proven TNF inhibitor so if I can take enough on a daily basis, I may be able to reduce my sarc symptoms that way. At least cannabis has never killed anyone unlike remicade or sarc!

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Hi,

Just a quick question. Have you tried a sarc clinic? Ifso which one, if not why not??????????

Cheers

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I see Dr. Alvin Bowels he is the head pulmonologist at Henry Ford in Detroit and he works very closely with the Cleveland Clinic.

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There are many other conditions that contain non-caseating granulomas including fungus's, cancers(lymphomas), infections, etc. That is why sarcoid is really a diagnosis of elimination. They test blood, urine, tissue for specific findings in line w/other diseases, then if negative...they consider your symptoms & come to process of elimination to call it Sarcoidosis. Not the most confidence building process I agree. That's why many of us are still being tested& re-tested over years just to be sure. It really stinks..but that's the current system for diagnosing sarc for now (one can only hope they perfect it soon). I would be curious to read verbatim what the pathology report says. There is an awesome site called allexperts.com where you can ask questions for free. I would get your pathology report & ask them what they think it means. I am also on Remicade along w/methotrexate & prednisone. Curious about how the cannabus could substitute for TNF factor. Where could I read more info on that? I am having nasty sideaffects from treatment & minimal improvement. But I really hope you get some clear answers soon. Please let us know.-Jayne

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Crohn disease also contains non ca se, eh i forgot, granuloma's. Infact all medication that worked for Crohn also worked for sarcoidosis untill now. Crohn is much more common so they are ahead of us in their research. Also no pussy disease.

David

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Other things that cause non-caseating granulomas:
Chronic beryllium disease (CBD), also called berylliosis. You didn't say what you do for a living but any chance you work in metal machining, ceramics, or nuclear weapons manufacturing?
then there's Hypersensitivity pneumonitis (HP), also called extrinsic allergic alveolitis, Numerous inciting agents have been described including, but not limited to, agricultural dusts, bioaerosols, microorganisms (fungal, bacterial, or protozoal), and certain reactive chemical species. (This often goes away in time).
Leslie

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Other things that cause non-caseating granulomas:
Chronic beryllium disease (CBD), also called berylliosis. You didn't say what you do for a living but any chance you work in metal machining, ceramics, or nuclear weapons manufacturing?
then there's Hypersensitivity pneumonitis (HP), also called extrinsic allergic alveolitis, Numerous inciting agents have been described including, but not limited to, agricultural dusts, bioaerosols, microorganisms (fungal, bacterial, or protozoal), and certain reactive chemical species. (This often goes away in time).
Leslie

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I think , Wegeners granulomas, is a disease that causes it also......they think I may have a vasculitis as I have the p-ANCA antibody,, right now they say sarc.....my rhumatologist says you can have more than one disease...though

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I also was diagnosed by medistinoscopic biopsy. This is the classic stage 1 disease. Granulomas in the hilar lymph nodes is a definitive diagnosis for sarcoid. I also have them in the antrum of my stomach, also diagnosed by biopsy. (No symptoms from it there)

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Get tested ASAP for valley fever. It mimicks sarcoidosis. There is a definitive test for it. What they give for valley fever is IV Amphoteracin B.

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ComynDoc,
What is the test? My friend found out while in the hospital for other things. Nobody will test me. Is it a blood test? Maybe I can get my doctor to do it if I make a big deal. I read that some tests come back negative when you have it. Thanks.

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Valley fever is also called coccidiomycoses. Ist is diagnosed by both a sputum smear and blood test.
Many of the symptoms are like sarc and the two can be confused. I lived in the San Joaquin Valley for 8 years and I am sure I was exposed to the coccidiomycoses fungus. The first thing I did when I went to the pulmo.doc was demand I be tested for valley fever. He was reluctant, but I insisted. He relented, and the test was negative.
I advise to get the test done asap. Rule it out, so you can have confidence you can be rightly treated.
Gary

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