Histamine Intolerance: a hidden problem for HIV+?

[sfpvguy41]

For a long time I've been lactose intolerant, after I seroconverted. Lately I've had pretty bad problems highlighted by three things: Itchy hives on scalp (uticaria), ringing ears, and sinus/nasal congestion. When it's really bad throw in the feeling you've been knocked on the floor by a giant and you get the idea.

The scalp thing I have had for many years, but not enough to cause great problems.  Lately though, it ges to the point where I want to dig holes in my head from the itching. And mood swings and brain fog plus lack of focus, which always flared up after meals.

I began to realize the symptoms were related to what I ate and worse after some things, particularly two favorites: red wine and chocolate. I thought maybe my lactose intolerance was casein allergy or intolerance and went on a diet to avoid all casein. That helped, but didn't fix the problem. But eliminating dairy cleared up the "background" congestion enough that I felt much more energy, clearer of head, more focused, and better sleep.

I decided to go to an allergist who tested for many food allergies, and low and behold nothing registered. Except for the "histamine control prick" which was huge. Now I've always had allergies and take antihistamine every day for over a decade. But I stopped it for the tests, and the Doctor told me something new: maybe I wasn't allergic to so many things, but I was histamine intolerant, meaning that anything that set off a histamine reaction or contained histamines, would mimic allergic reactions.

Then I went on an Internet rampage and learned all about histamine Intolerance.  It's fairly new in being recognized, and get this, is caused by your body's inability to break down histamine, usually by not making enough of the DAO enzyme. Guess what screws up production of DAO (in the gut)...the damage caused to the vilia in the small intestine which is the same reason so many of us get lactose intolerant. In fact HIT is almost always found in people who are lactose or gluten intolerant or have other GI diseases (see the AJCN article below).

Bam I "HIT" the nail on the head. Readers here can google it yourself, but I liked http://histamineintoleranceinfo.blogspot.co.uk/2012/08/histamine-intolerance-overview.html and http://www.histamineintolerance.org.uk/ but there are many more sites about it.

I learned to diagnose you need to go on a low histamine diet (so many foods are either high in histamine or cause your body to release it it is relly hard) and keep a food diary of your reactions after eating. Yep, everything from diet coke to nuts to orange juice to tuna to tomatoes to pizza....list goes on. And yes, there is even an iPhone app for HIT listing high histamine foods.

I also found a new supplement sold in the US as Histame, which supplements your DAO. For me it works great, but only for almost exactly 3.5 hours. So at about $1/pill, I would need to take 6-7 a day.  I take them now if I'm about to eat a high histamine meal (spaghetti with red wine) or cheat.

I talked to my HIV doc who said he had never heard of it but it made sense, agreed to try to test me for A low level of the body's digestive enzyme Diamine Oxidase (DAO), which I have yet to chase down, it's hard to get tested. And I am planning to see a specialist, but there aren't many int this area.

If you look at the Histame site, Www.histame.com, or View the video on YouTube by them called "Food Intolerance, Revealing the hidden epidemic" you'll see that researchers in this field (and there are many, it is not quackery, here is a scholarly article from the American Journal of Clinical  Nutrition http://ajcn.nutrition.org/content/85/5/1185.full) say HIT is like MS, hard to identify because its symptoms are so broad and vary from person to person. But look at the list of some symptoms:


Potential Symptoms
constriction of the throat
diarrhea
dizziness
ear ache
excess mucus in the throat
Eczema
fatigue
gas
heart arrhythmias
hypotension
nutritional deficiencies
post nasal drip
runny nose
shortness of breath
skin itching
skin rash
small bowel bacterial overgrowth
sore throat

...don't they sound familiar to us?

Here is my question and thought. If HIV infection destroys the protective mucous lining in the gut (well understood) which among other things leads to GI issues for us even if we are undetectable, including popularly lactose intolerance, doesn't it stand to reason that many of us, especially long termers are susceptible to HIT? I swear I thought I was getting HIV brain fog, and with a careful low histamine diet it is ALMOST totally gone....like a new man. Less moody, more happy, less negative, more focused....

I would like to knwo has anyone else heard of this? Is it an issue with HIVers especially those of us at 10+ years (it came on very strong for me last soring at 9.5 yrs positive, but I have always been undetectable).

To throw out another thought, in case researchers are reading this, what about my osteoporosis? I have blamed it on the meds, and a switch to Epzicom from Truvada losing the Norvir seems to have helped, but could a "leaky gut", causing calcium malabsorption, which seems tied in with these intolerances, also be the problem?

Plus I've read recent research that says even if you are undetectable, there is detectable viral DNA in the gut?

I am not a doctor or researcher but I've read up so much on this now, that I can't help but believe that this "Hidden Intolerance" might be a lot more prevalent in our community than is realized.

If anyone has bothered to stay with me this long and has any thoughts, I'd love to hear them!

[Pricho01]

Interesting.... I never had psoriasis or any other skin irritations until HIV came along....

Now I have itchy skin rashes and an itchy scalp that drives me slightly loopy at times 

Also diagnosed with ulceritive colitis 2 years ago......

Ill check your links out....

[Common_ground]

Just wanted to toss this one out there for those who experience itchy scalp. What I did was to switch shampoo, I now use a rather well known anti-dandruff shampoo, it made things better and after a week or so and I dont have the urge to scratch myself on the head all the time like a monkey

I also have the ringing ears and from time to time sinus congestion, but I believe these are side effects from the meds, no?

Btw, Interesting read anyway.

[sfpvguy41]

Every medicated and natural shampoo, and even topical steroid cremes never helped the scalp itch. Guess what has helped: anithistamine anti itch spray you get at walgreens e.g. For bugbites, kills itch right away.

Trick is to pay attention if symptoms flare up within 1/2 hr to several hours after eating a high hitamine food.  Lists are on the refs cited.

[catlady]

Thanks so much for posting this topic.  I just read your post yesterday and am interested in what you've learned.

I have struggled with lactose intolerance/dairy allergy (and other food allergies) for years.  My reaction is shortness of breath and gastrointestinal problems.  Over the Christmas season/NYs I didn't go out of my way to eliminate dairy from my diet and typically that wouldn't be too much of an issue as long as I didn't go overboard.  As a help to manage my reaction, my former GP (since retired) prescribed a steroid inhaler (Symbicort).  Everything was ok... I was healthy otherwise, could dance 3-4 nights a week for 3 hours at a time without any issues.

In January when I went to see the nurse practictioner for my quarterly HIV check-up and asked for a prescription for the Symbicort, she took it away from me as it interacts with my ART, prescribed ventolin and sent me for a pulmonary function test.  I did horribly on it and was diagnosed with emphysema.  What?!  I was prescribed a horrible steriod inhaler (QVAR) and Spiriva to manage the COPD.  Meanwhile, I was just getting over a short period head cold. I started to take these inhalers and got terrible chest congestion and diarrhea so I thought the cold had moved into my chest. 

I immediately went to see my TCM -- he believes that I do not have asthma or COPD and that it is an inflammatory / allergic response.  Of course, conventional doctors do not see it that way.  I have emphysema and that's it.

It took me 7 weeks to figure out that it was an adverse reaction to the Spiriva -- in doing some digging, I found out that it is not advised that people with severe milk sensitivities take Spiriva!!!  ( I have learned a valuable lesson... don't just read the product info that comes with the meds.... research everything online first).  Three weeks ago I stopped taking the inhalers except for my rescue inhaler to help w/shortness of breath.  Spiriva can take up to 6 weeks to leave your system.

Since stopping the Spiriva, I am slowly getting better, but seem to overreact terribly to foods.  This is where my interest in the histamine intolerance comes in.  I don't know if what I am experiencing is allergies or my body is so overwhelmed by ingesting dairy every day for 7 weeks and is still lurking in my system that has my histamine levels on overdrive and consequently am reacting badly to many things that I hadn't experienced before (I have asthma attacks when I eat offending foods-- I have never had these until I started taking the Spiriva).  I am taking glutamine to help with the diarrhea and it helps a bit, but I am still experiencing diarrhea

I have problems with yeast overgrowth in my gut, suspect a leaky gut and have tried many probiotics but have had problems with them.  I have booked an appointment with a naturopath on Wed.

BTW - I also have osteoporosis, strong CD4s (800), undetectable VL, good numbers so overall healthy except for

I am not sure if you'll see this reply as it's 1.5 years since the original post, but I am very interested in your experiences, because I may be struggling with the same issues.

[helloandgoodbye]

Dude! You are the second person to figure this out and post on it (besides myself). I had shortness of breath, flushing, eczema, brain fog, severe rapid heart rate, dizziness and the worst ANXIETY. Anxious even while watching TV or doing nothing stressful. My doctors tested me for carcinoid, pheochromocytoma, asthma, allergies and many more. They were all negative. I had to figure this out on my own. Histamine Intolerance is not taught in medical school in the U.S.  It has been a known problem in Europe and Austrailia for years. Glad you also found the answer and relief with Histame and a low histamine diet! 

[sfpvguy41]

Hi I just saw this thread re-up. Glad you figured it out.

I think HIV puts our systems into a heightened state of inflammation even if we are undetectable, as there is still some virus in our systems. I think this gives some of us who are susceptible (I had allergies to cats and mold as a kid) a stronger baseline reaction. When I was tested for allergies nothing much affected me, but the baseline histamine prick itself gave me a huge reaction, that was the doctor's clue.

Histamine intolerance is when you have less room to tolerate histamines until you react badly...and an "overdose" of anything histamine-rich can set it off. For me guaranteed that's red wine, chocolate, cured meats, tomatoes, champagne and soy sauce to name a few...yep, all the delicious stuff.

I also had, and sometimes still have the panic attacks, brain fog, dizziness, racing heartbeat and have to lay down, if I am not careful. The pills help a lot (called DAO or diamine oxidase) but only last 3-3.5 hrs I find. But its manageable and I am a LOT better. And sometimes I splurge on a pizza or red wine with some pills.

I recently switched to Triumeq. I am hopeful that if it works better than old regimens, inflammation will be lower and the problem less severe. So far, that seems to be the case but it's very hard to measure objectively.

[sfpvguy41]

Catlady, sorry I never saw your post.

If you still have problems, I suggest you get some DAO pills, which work like lactaid pills for lactose intolerance, and see if they help. For me, I feel a huge difference in 15-20 mins, lasts 3-4 hrs. Then your system has time to process the offending histamine on your foods.  And try a low histamine diet.

I hope you recovered well!

[harleymc]

I like hidden problems, it usually means there is no problem.

[tryingtostay]

Interesting. 

Here is a link with symptoms mentioned: Link

I have not been diagnosed with histamine intolerance but I have a few symptoms on that list that the doctor can't figure out. 

[tryingtostay]

Also, have you ever tried an antihistamine?