Flushing

[trc1962]

I have posted about my issue with foods with histamine and how avoiding them helps. However my face is really red today and it hurts and I have been eating careful all month! I am ready for a couple of squares of chocolate! Usually if I avoid caffeine and aged meats and nitrate heavy veggies then I am okay. My body went crazy at the end of January! I hope you can figure what helps/hurts your flushes and can get it feeling and looking better. I have been really self conscious this week at school as I can't completely cover my redness either. It just stinks, that is for sure! Nothing topical has really helped although Clinique products don't aggravate it.

[irish]

If any of you are having the flushing off and on with the palpitations do not be afraid to ask your doctor to check you for Carcinoid syndrome. This is a weird disease that causes growths that secrete hormones. They look like little tumors.

I had one found on my appendix during my hysterectomy (I was so thankful I had abdominal surgery so it could be found) back in 1990. It was found in time as the serosa was just starting to erode. Carcinoid tumors are neuroendocrine tumors that are a cancer. They didn't call it cancer back in 1990 but called it a malignant condition. Strange thing--they discovered since then that it is indeed a cancer because it spreads and takes lives.

About 8 months after I had my appendix and carcinoid tumor removed one of my sons classmates had a mother who died from carcinoid tumors. They can start pretty much anywhere but like to hang around in the abdominal cavity and the lungs. The intestinal tract has a lot of lymph tissue and that seems to attract this type of cancer.

There are meds for this disease but it can be a hard battle with this disease. I also had a high school and nurses training classmate who died from this. She went to ER thinking she had a hot appendix and when they opened her up they found she had a carcinoid on her appendix and a cancer in her colon in the same area. I am glad this got mentioned as it isn't much talked about but it is a serious health issue. Good to know as we raise kids and grandkids.

The testing I had to have done for a couple of years is a 5H1AA urine test. It is a 24 hours urine test. There is a blood test that can be done also but it is more spendy than the urine test. If your doctor doesn't get too excited about this be adamant that he checks this. When we have autoimmune issues it is just the nature of the beast. The immune and autoimmune have to do with the killer cells which are the ones that kill off the bad cells. If everything goes awry then the bad cells can grow when they shouldn't. A very simple description. Take care all. Irish

[Sjocool]

irish, thank you so much for your response! I am so sorry to hear you went thru all of that.. Looking back, did you experience any typical symptoms for carcinoid syndrome before you discovered you had the tumor? Also, I know prices will vary with insurance, but are you able to give me a very rough estimate of how much the urine / blood tests cost? You can message me if you'd feel more comfortable. From what I understand, it can occur for a long period of time before it's caught, due to the slow growth. I keep thinking to myself, I'm too young for this stuff.. But reality is, it could actually happen.

Trc1962 have you tried any specific topical creams? If so, we're they over the counter or prescription? I'm sorry to hear things aren't going well.. It can definitely be very frustrating when you can't control what your body does. I don't even want to live the house some days, I get so self conscious..

[irish]

sjocool, I do not remember how much these tests were, but I remember that the one blood test I had was spendy and I reminded myself never to have it again.I did not have any symptoms at all of this carcinoid. The problem with them is that they do grow slowly and by the time the symptoms show up they have often spread and affect enough tissue that chemotherapy is used and can take a long time. I have forgotten if there is a cure rate from them. With the slow growing tumors the growth can take so long that a person can think they are gone and then another one shows up.

The chances are that you don't have this, but with flushing and having autoimmune it is good to have the testing done. Those of us with autoimmune can get some weird stuff. Good luck. Irish

[jazzlover]

Testing for a carcinoid might be a good idea, but MCAS is MUCH MORE COMMON and much more likely.

Google "histamine intolerance" at the very least. The Low Histamine Chef website has a lot of good info too.

[Sjocool]

I will be seeing my rheumatologist towards the end of April. I will talk to her about this and see what I can do about further testing without pinching my wallet.

Jazzlover, very interesting about histamine intolerance. I've very recently stumbled upon "leaky gut" and "candida overgrowth". Really makes one wonder. The past two months I've really started getting congested. Especially after I eat. I have to immediately blow my nose and clear my throat of excess mucus. It's annoying to cough and blow my nose after every little thing I eat. It doesn't seem to happen more with certain foods. I have tried watching what I eat but everything seems to be causing it. I currently take an allergy pill and a decongestant everyday but it still doesn't seem to be enough. I don't know what more I can do.

If only it could be something as simple as that, just a bacteria overgrowth as the root of all problems. It's a very curious thing. I've read articles linking candida overgrowth at the root of autoimmune diseases and cancers as well. It would be so neat if we could heal ourselves by just simply eating things to heal our gut. Part of me is hesitant on leaky gut syndrome and candida overgrowth. Is it real? Why haven't any if my doctors mentioned it once?

[jazzlover]

Yes, leaky gut and candida are real. Far too real.

[trc1962]

I believe all my issues became flared after a colonoscopy in late November. The colonoscopy was nothing, but the prep horrid and right after that I started not being able to go to the bathroom like I had all my life. I think the prep wiped out my good bacteria - I don't know but I won't be signing up for a colonoscopy anytime soon. It is just so complex this autoimmune stuff and we have complex bodies - T cell and B cell over activity, cytokines...and my rheumy just doesn't focus on those things very well - most of them don't get into histamine stuff yet or mast cell disorders. Sigh....

[Carolyn]

I have just been diagnosed with Sjogren's within the last two years.  First I was diagnosed with Selective IgA deficiency. For years starting in my early 40s I was told the flushing on my face was diagnosed as Rosa cease. I even started having large pustules. After I  retired when I was 54 around that time it disappeared. Perhaps it was Sjogren's all along. I wish there was a way to educate doctors and the public more widely about Sjogren's. Carolyn

[jazzlover]

- most of them don't get into histamine stuff yet or mast cell disorders. Sigh....

-Most allergists don't either. You will need to do your homework to find a doctor who knows the score with this. Let me know if you need any help.

[trc1962]

15 years ago my autoimmune problems began with flushing as well, mostly in my face and I thought it was rosacea, but no rosacea in the family. Now I believe it is a type of mast type cell disorder that shows as histamine intolerance and I thought I was doing well by taking antihistamines and eating low histamine. Although my face did better and my hair fall slowed, the inflammation continued on the inside of my body until I presented with a "flare" that presented with neuropathic symptoms and began in my legs. Long story short, no doctors in my area know much about mast cell type disorders and definitely don't think it could possibly be autoimmune related. I myself am not sure either, but going to Seattle in a month to get their opinion. Hoping you can figure your flushing out as well because it sure can go farther than your face. I would add that my flushing has no bumps at all that would resemble rosacea...just flushing.