The last two times I had an attack I took an anti-histamine tablet and the symptoms went away... so maybe an answer there...???
Please keep us posted! I've been suffering from this since a few years and went to all kind of tests, all negativem including histamine test. Thanks!
I just read all 11 pages, I am having my 5 attack right now at 115am in Los Angeles. I do not have insurance. My last attack had me rushed to the hospital. For me I feel the itchy symptoms mildly in hands and feet and slowly rises to head, while or after stomach issues. I had blood work by an allergist, and nothing. I take the Zertec/pepcid combo and took it earlier today, it seemed to help but here it is again, I am beginning to swell, I have two epi pens that cost a fortune, as did the ER etc. My wife is out of town with our daughter, and I am alone. So a tad nervous. I did read something about pancreatic cancer so of course I am tripping out. I have not eaten anything different although had coffee today and stress about finances etc. It's really tough and really scary, and doctors not helpful. I have now applied to this post to hear if anyone gets answers, it's gnarly. 39 yr old male- J
After 4 years of having these attacks (I posted several messages already on this forum) I now underwent some profond blood tests (which cost me a fortune!) and they figured out that I was ANA-positive, so it might be some kind of auto immun disease, I will contintue my tests.. and I will keep you posted.
Jacqueline (Europe)
March 15, 2012 was my first attack. These attacks are the same as almost everyone posting. Could not tie the attacks to a food because my attacks were usually 8 or more hrs after I last ate. Had them a couple times a month. Went through many tests including many blood, parasites, ultrasounds...all negative. So I reluctantly I went to a GI doctor and had a colonoscopy which they also took a biopsy of my small intestine. Just found out that the results showed that I had Celiac Sprue. Now I start my journey on a Gluten Free diet. Hopefully this is it. I have had a pretty regular stomach ache for a long time but just thought it was due to gas or whatever and so I never connected the two. I will let you know if something else surfaces.
Also, I have been watching these posts for 6+months now. So glad to find you all. I am a 37yr female with two toddlers, who ask for assistance and flush the toilet for me while I am dying during an attack. Hoping that Celiac's is all that I have.
Hi, well I've posted a couple of times on this site. I experience 3 attacks in two weeks the last one I ended up in emergency. I was hospitalised for a week with an infected gallbladder. Later in the week the removed it. My gallbladder was full of stones, highly inflammed and stuck to my liver. A part of the gallbladder had began to die which could have been life threatening in months ahead. I know a couple of you have said it isn't your gallbladder but those who haven't had it checked. I recommend an ultrasound to check for stones - when one of the stones come out they get stuck in the bile duct which causes the pain. I am now four days after my gall bladder removal and I am hoping to never ever have another one of these attacks.
I have been wondering if Celiac or something similar has caused certain malabsorption (would explain my anemia) which is causing my DAO enzymes to be low (just a hunch, no test yet to confirm) which is leading to buildup of histamine in my gut and hence the reactions. Would also explain some of my other digestive issues.
I actually went through these posts and tried almost everything suggested. All tests came back normal including ultrasound of stomach where they checked all organs at my request in that region. Bought DAO enzymes and tried them out while putting myself on a histamine restricted diet ( which happens to be very restricting ) and then went off the diet while taking the enzymes- to give it a test run-but ended up with another attack. Went back on the diet but decided to finally give in and take the antihistamines Zyrtec and Pepsid as well. I havent had an attack in two months but still have stomach aches. Then had a colonoscopy 3 weeks ago with a biopsy of my small intestine which I just received the Celiac sprue news. Feels like a long journey. I have lost sooo much weight without reason and my stomach hates me lots of the time. You should read the author of
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s story, sounds similar to ours. I was sure I was dying. Now I am hopeful that I can get better. By the way, there are blood tests for Celiac's disease.
Hi folks:
I had my first "attack" of this last night. Started around 9 PM, 3 hours after eating. I was chomping on some bread and it felt like a piece of it got stuck up my nose. I started to sniff and then my nose / sinuses got all stuffy.
THen I started to feel hot and my scalp got itchy. Then my palms got itchy and finally the soles of my feet. Then anxiousness set in.
I had an urge to empty my bowels, but not as strongly as some of you describe. After about 2 hours it died down and today I'm more or less back to normal other than my nose is still a bit stuffy with post nasal drip.
I don't have food allergies. But I do have lyme disease and have been treating parasites (common with lyme disease).
To me, this is either something to do with Lyme (it is often misdiagnosed as Crohns / Celiacs / IBS, autoimmune) or parasites. The blood tests for lyme are terrible. A negative result doesn't mean you don't have it. Same with parasites. I had tested negative for all parasites, but started treating with herbs and you would be amazed what exited my body.
We deworm our dogs and cats once a year. Why not people? You can do a web search for Dr. Deitrich Klinghardt and follow his parasite protocols.
Be well.
I think in many cases the reaction IS histamine related (given especially that it feels like it's allergy-related with the itching and flushing and redness), and the histamine intolerance is being CAUSED by some disturbance in the gut. If you have parasites, you're likely going to have malabsorption issues, same thing with Celiac or other gut disturbances. The reactions aren't caused by only one gut issue or another, imo. Low DAO enzyme levels caused by either parasites or celiac will eventually lead to an overabundance of histamine in the gut, which will cause the reactions that we're all having.
I've read all of these posts now and am very grateful for having done so: thank you all for posting!
I share many symptoms, and have been having these attacks since September 2011. All but one (I've had 13 now) have happened between 9:30pm and 1am, many waking me from sleep. I wake up with a desire to go to the bathroom, sometimes with a burning feeling in my stomach. I try to go to the bathroom as quickly as possible in hope of avoiding an attack, but I know when my palms start to itch exactly what's coming next. My blood pressure drops dramatically - last Tuesday was my last attack and my bp dropped to 54 over 32, with a pulse rate of 144. I lie down or I'll faint. My head feels full and my nose and sinus feel under a lot of pressure. I can't talk and feel very weak. Then I have to go to the toilet again, sometimes I also throw up. At this point I am also sweating profusely, lying in a puddle. After going to the toilet the cramps begin and when they finish I am shaking and shivering and can't get warm. The whole episode lasts for about an hour. The next day I am exhausted and I feel weak with some tachycardia for 4 or 5 days.
The first time it happened I thought I was having a heart attack, I went for a heart scan and check up and it was fine: the doctor told me I was having vasovagal syncope. I was researching that for a while but not getting anywhere. The cramps I had with this last attack were the worst - writhing on the floor as usual, but it felt longer and more severe this time. That was when I thought it must be some sort of intestinal problem rather than a neurocardio problem. Found this forum (thank heavens for forums!) and now feel good about trying the antihistamines to see if they make a difference. I live in a very rural area, far from doctors and emergency rooms - and attacks are always over by the time anyone could arrive.
But I also have questions: why would the majority of attacks come at night? What happened to cause this sudden change in my ability to break down histamines? What is the association with stress? What is the long term answer to this issue?
These attacks are awful, it really effects how I spend my evenings, turning down invitations to dinner etc., as I feel I really must be home and rested before 9:30 'just in case'. I had one attack on the ground in a gas station: not good.
I'm a 44 year old female, no children.
Thank you again, and wishing you all a way to stop this!
Ancel
I find it interesting that so many people here seem to be on Zoloft, I take it as well (generic setraline). From what I read, Zoloft is a histimine receptor antagonist and can mess with with histimine levels. Google the words histime and setraline, unfortunately I don't have a medical background and don't understand what all this means, maybe someone with a medical background could chime in.
From what I've read, histamine levels are highest at night. Also, track when it happens during your cycle, as I've read that DOA enzyme levels are lowest during "that time", and both of my attacks happened during or right after my cycle. I almost had a third this cycle. Seemed to come on a lot slower than the last two, with mild itching and my stomach just felt icky. I took two prescription Benadryl pills and felt better within the hour, no full-blown attack.
What caused the change? Who knows...I'm still trying to get answers to that one.