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"Why I don't believe in Anti-histamines" (Read 9051 times)
MastoGem
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"Why I don't believe in Anti-histamines"
07/16/14 at 06:39:00
 
"Why I don't believe in anti-histamines" - taken from the Low Histamine Chef

Please read and consider listening to Dr Jonejas amazing interviews on the subject.

"Among the hard lessons I’ve learned along the way is that, not only were the medical community’s only available treatments useless to me, they were also counterproductive and potentially dangerous.

My daily medical journal digs soon turned up that pharmaceutical mast cell stabilisers and antihistamines cause long-term damage.
Interestingly, it was noted that people on these types of medication experienced an increase in appetite. If there’s one thing those of us with histamine disorders could do without, it’s being driven to eat more, thereby consuming even more histamine.

In my case, and in those of many I’ve encountered online,
antihistamines gave me a sweet tooth I’d never had previously. And if there was one thing I really didn’t need was more encouragement to drown my sorrows in another tub of Ben & Jerry’s.

Included among the scary side effects of the first line of treatment for histamine disorders is the following:
H2 receptor antagonists and proton pump inhibitors like Zantac and Omeprazole can create new food allergies; leave the young and elderly vulnerable to pneumonia and life threatening bacterial infections like Clostridium Difficile; and create vitamin b12 deficiency or even stomach cancer.

Meanwhile, H1 receptor antagonists like Claritin (Loratadine) are causing hormonal disruption to the point of affecting penile development, exerting cocaine like effects on the brain (Benadryl), as well as the more widely acknowledged weakening of the immune system, weight gain, mood disturbances and depression.

Throw in that recent studies show antihistamines actually make allergies worse overall, and you have to ask yourself why these medications are still the first line of treatment.

Check out what Dr Janice Joneja had to say about the rebound effect of antihistamine."



http://thelowhistaminechef.com/faqs/

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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR
 
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peter
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Re: "Why I don't believe in Anti-histamines"
Reply #1 - 07/16/14 at 19:28:14
 
Interesting I don't like any pills even worse if you take them long term

But if the benefits of medication allow a better quality of life the the Risk might be worth it
The main problem is how do we know who s right about the information we get there don't seem to be a single trusted place to find the info
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redbird
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Re: "Why I don't believe in Anti-histamines"
Reply #2 - 07/18/14 at 00:26:50
 
when I read this posting....I took several deep breathes...pushed my chair back and thought...no redbird...don't say anything...and I slept on it but this morning I just cannot ....and please know this is nothing against the person who posted it...
BUT....
first I would want to know just what experience this Chef has with dealing with masto on a large base...does he have some medical knowledge or someone who is trying to sell his opinion and in MY OPINION that is what he is doing...
HOW could someone possible know more than the many researchers from all over the world and we are all so different even doctors or experts have a hard time putting us into the same place
AND how could he/she possible know how important histamines are for most of us here...
AND has he known the fear of having ANAPHYLAXIS  and finally being able to have some quality of life that these meds bring to masto people..
I have never heard of this person and that is OK...but before you take this advice please put a lot of thought into it..it may be true what this person is saying...but I would rather take a chance than wonder if I can live my life better without my meds .... because of the meds that I take...I do have some kind of life..without that weekly visit to the ER
sorry...just had to say it..

redbird
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Bruce Hart
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Re: "Why I don't believe in Anti-histamines"
Reply #3 - 07/18/14 at 03:17:21
 
I'm familiar with the Low Histamine Chef, and she seems to have fallen victim to the appeal to nature fallacy, a belief that something is healthier just because it's natural. She seems to be an anti-drug extremist.

Many people with this fallacious all-natural philosophy cherry pick studies that show some effect that seems negative, but which is often insignificant or irrelevant when the drug is used at the therapeutic dose for the appropriate condition. For example, low stomach acid increases risk of food allergies, nutrient deficiencies like B12, and food-borne infections, but if people with excess acid take a drug at proper dose to lower acid to normal levels then they don't have those risks.

And there's way too many variables to draw conclusions from the perceived bad experiences with long-term drug use from a small number of people. Everybody's biochemistry is different which is why a small percentage of people in drug trials can have significant side effects while most don't. There's also drug contraindications for people with certain medical conditions and taking certain other drugs.

Then with MCAD causing many intolerances which are different for each individual, we don't all tolerate the same meds. And you can stop tolerating a med that was fine at first, which may have been The Low Histamine Chef's problem. But it's hard to know what to credit for improving or worsening someone's condition if it's a very gradual long-term process. It just leaves a lot of time and opportunity for other factors to come into play including just the natural course of the disease which may have been far worse without the drugs.

I think most of us on this forum have had good experiences from long-term use of meds for MCAD. I've been taking high doses of anti-histamines (Benadryl and Zyrtec) for over a year, and they seem to not only help a lot with the immediate reactions, but also help keep me from becoming more sensitive from reactions like I did before starting anti-histamines.

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Britt
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Re: "Why I don't believe in Anti-histamines"
Reply #4 - 07/18/14 at 11:00:47
 
Amen. I thoroughly agree with Bruce and redbird. I have looked at the low histamine chef's website, and most of her (I believe it's a woman) recommendations regarding food would make me very sick as salicylates are some of my worst triggers. And the thought of going without my meds is not a good one.
Just because something works for somebody else, it does not mean it is going to work for you. Especially with mast cell disease.

I was also thrown by the guy who made the documentary "Fat, Sick and Nearly Dead". He apparently was diagnosed with autoimmune urticaria (same diagnosis as me) He was overweight and in a bad place. He decided to drive across the country for I don't know how long only juicing for his food and nutrition. He swears by this and thinks it's the answer to many issues. Maybe it worked for him, but I know through experience, that if I were to drink what he was he was whipping up, I would be on the floor!
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Bruce Hart
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Re: "Why I don't believe in Anti-histamines"
Reply #5 - 07/18/14 at 11:34:31
 
Yeah, the Low Histamine Chef seems very passionate about treating conditions with diet change and likes to bash antihistamines. I know she means well, but from what I've seen she's not even close to being justified in advocating against the standard of care for MCAD.

There's a common misconception that natural alternatives are better. For example, a lot of people seek natural antibiotics and antihistamines. Do they think natural antibiotics will magically target only the pathogenic bacteria leaving the gut flora untouched just because it's natural? Do they think natural antihistamines will magically avoid the small negative effects inherent to blocking histamine receptors?

Does anyone consider Poison Ivy a healthy vegetable? Would anyone like to eat a lovely all-natural poison dart frog? All natural philosophy is misguided. We should instead seek evidence-based medicine, shown to be safe and effective, whether it's natural or not.
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peter
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Re: "Why I don't believe in Anti-histamines"
Reply #6 - 07/18/14 at 15:03:16
 
Without treatment for me ment minimum total disability

With treatment No disability and a great life
That's whate we want from medical treatment isn't
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sarahkay1111
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Re: "Why I don't believe in Anti-histamines"
Reply #7 - 07/18/14 at 16:32:32
 
I think we all have to do what we need to do to function with this disease.

Redbird--if it makes you feel better, the Low-Histamine Chef does have MCAS with anaphylaxis and has seen several of the specialists.  She does state in her website that if you have anaphylaxis, or other severe symptoms, you may have to keep taking antihistamines no matter what her diet does for you.  She always specifies that people may not tolerate many ingredients in her dishes, and tells people to sub in safe ingredients.

I agree with her theory that being on the standard low histamine diet is making us sicker.  My hair is falling out since I started it a year ago and I'm sure it's from the vitamin deficiencies, since I can't take any, and my diet is so limited.  I am slowly working on adding healthy foods to my diet, but it is a SLOW process, as you know.  I really wish I wouldn't have eliminated many of the foods that I did when I started the low histamine diet because at least I wasn't dying from eating them, and now when I try the things I ate a year ago, I have severe reactions.  

I don't agree with her that Benadryl is like "cocaine for your brain."  The only reason that's been reported is because when you give it IV, if it's given fast, you get a high (I know this because I'm a nurse, and pt's have told me you get high when it's injected really fast). When I had my endoscopies,  I was freaked out when the anesthesiologist gave it to me much faster than I would have given it, but I felt fine, just tired.

I will stay on antihistamines because I really feel they help me, especially the Zantac.  I can go without them occasionally and I don't panic.  I have been doing acupuncture too, and it is really helping me (especially with being able to sleep without waking up with reactions).  

For the people that can eat many foods, I think her recipes would be beneficial because they include many anti-inflammatory and antihistamine ingredients.  For those of us with the food-induced anaphylaxis, I think we're on our own with figuring out what we can eat...  

I hope you all are well Smiley  Sarah
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Bruce Hart
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Re: "Why I don't believe in Anti-histamines"
Reply #8 - 07/19/14 at 16:01:38
 
Sarah, another possibility is MCAD is causing the hairloss.

Hair loss/thinning was listed as a potential MCAD manifestation in Dr. Afrin's publication, and PGD2, a mast cell mediator, has been found to inhibit hair growth. But the publication I read said aspirin didn't help much, presumably since it also reduces PGE2, and PGE2 enhances hair growth. Cetirizine reduces PGD2 and increases PGE2, but I'm not sure it would be potent enough or targeted enough taken orally or topically. I've only read a little about it.

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sarahkay1111
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Re: "Why I don't believe in Anti-histamines"
Reply #9 - 07/20/14 at 15:40:04
 
Bruce,
Interesting about the PGD2 and PGE2.  I do have high prostaglandins and noticed hair loss right away when I started getting sick.  But, when I restricted my diet, the hair loss increased dramatically.  Thank God my hair was thick to start with, I bet I've lost half...  How have you been feeling?
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Bruce Hart
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Re: "Why I don't believe in Anti-histamines"
Reply #10 - 07/20/14 at 23:21:48
 
Yeah this disease directly and indirectly messes us up. Many of us get malnutrition since we can't tolerate enough foods, and then can't even take supplements to make up for it because we can't tolerate them either.

I'm not doing that well, but I am hopeful since I have my 2nd appointment with MCAD specialist in 5 weeks, so hopefully I can get to try cromolyn and/or ketotifen soon.
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Re: "Why I don't believe in Anti-histamines"
Reply #11 - 07/21/14 at 03:02:05
 
Sarah..just wanted to comment on the bendryal problem..from lots of people this seems to be a problem when given fast...makes the heart beat faster and sorta go nuts
so from medical people came the suggestion and is what I use...when given bendryal injected into Iv etc...it is given in over a time period of 2 minutes..in fact this is written on all my ER papers and even in hospital stay and it has always been done this way ..
hope this might help
redbird
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sarahkay1111
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Re: "Why I don't believe in Anti-histamines"
Reply #12 - 07/28/14 at 04:39:48
 
Hi Bruce,
I hope you get the mast cell stabilizer. Let us know how it goes and good luck Smiley

Redbird,
Thanks for the info--I always give IV medications to my patients slowly, so I assumed most other nurses would do that, but they don't!  For us Mast Cell people, I always ask them to give meds slowly now.  

I hope everyone is well--Sarah
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