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Author Topic: Histamine Intolerance: a hidden problem for HIV+?  (Read 1809 times)

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Offline sfpvguy41

  • Member
  • Posts: 115
Histamine Intolerance: a hidden problem for HIV+?
« on: October 04, 2012, 02:29:51 AM »
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!
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline Pricho01

  • Member
  • Posts: 58
Re: Histamine Intolerance: a hidden problem for HIV+?
« Reply #1 on: October 04, 2012, 03:27:25 AM »
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  :P

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

Ill check your links out....
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline Common_ground

  • Member
  • Posts: 288
Re: Histamine Intolerance: a hidden problem for HIV+?
« Reply #2 on: October 04, 2012, 04:31:30 AM »
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.
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline sfpvguy41

  • Member
  • Posts: 115
Re: Histamine Intolerance: a hidden problem for HIV+?
« Reply #3 on: October 04, 2012, 11:42:31 AM »
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.
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline catlady

  • member
  • Posts: 1
Re: Histamine Intolerance: a hidden problem for HIV+?
« Reply #4 on: April 13, 2014, 03:08:03 PM »
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.


 


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