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02-19-2013, 07:51 PM   #1
Stephen
 
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Personal Histamine Revelation

This is going to be long. You may remember me from my old post claiming that I had controlled my "Crohn's/colitis" with diet. http://www.crohnsforum.com/showthread.php?t=43702

Whatever I was doing at the time worked for about two weeks. Then some problems starting coming back... racing heart was the first I noticed, then D and joint pain.

This went on for about 4 weeks, as I continued my "small" amount of mesalamine, loads of probiotics, and what was essentially a 0 processed carbohydrate, 0 processed sugar, 0 dairy diet.

Great. I'm lying in bed in late December, sick of the D. It didn't really seem to be getting much worse, but I wasn't getting better.

Then I remembered that my younger sister was at one time diagnosed with "histamine intolerance," or "mast cell activation disorder." It wasn't for sure, since the appropriate blood tests are not common in the U.S., but her allergist was certain that something is/was causing her problems. She has been on a daily antihistamine since and has had zero problems. Her problem was random bouts of anaphylaxis after eating histamine rich foods such as fermented dairy or hot dogs, sausages, cheeses, aged foods, etc.

I thought to myself.. "heck, maybe I have a similar problem. Let's see what an antihistamine might do for me."

So I took a single 10 mg Zyrtec. Antihistamines have never been something that I have taken. I had maybe had 100 MG of Zyrtec in my ENTIRE LIFE up to that day in early January.

Over night, every single one of my "colitis" symptoms vanished. Literally everything. Eye redness, cramps, diarrhea, joint pain. Everything disappeared.

Called my doctor, his assistant told me "I've never seen this happen with a "colitis" patient, but if it works for you, keep doing it."

So I have to this day taken a 10 MG Zyrtec every single day and have yet to see a single symptom return. It has been over a month, and I have also stopped all Mesalamine, can eat whatever I want, and feel overall wonderful. I have also gained another 10 pounds since the time I felt I had my "colitis" under control with diet. I was 135 then, I saw symptoms return, and dropeed to about 125. I took a single 10 mg Zyrtec, all my symptoms went away, and I am now 145.

Now, of course many among you may suggest that it was a simple "random remission." Sure, I might have the same doubts myself, but I would like to outline what I feel proves that that my colitis/Crohn's has been caused by unregulated histamine levels and/or underproduced diamine oxidase (the enzyme in the gut that breaks down histamine).
  • My brother's first flare up (also a previous Crohn's patient) occured immediately after having a severe sunburn. Sunburns cause heightened systemic histamine levels. Source: http://chealth.canoe.ca/channel_sect...ation_id=11997 I have since noticed mild symptoms associated with mild sunburns.
  • My sister has odd not-by-the-book asthma that the doctors can't explain. This can also be a symptom of "histamine intolerance" or mast cell activation disorder. Source: http://www.histamineintolerance.org.uk/about/symptoms
  • Before I finally had my first colitis flare, I had been having chronic constipation and malnutrition my entire life. Yet another common symptom of unregulated systemic histamine.
  • My symptoms were not too bad before I was first hospitalized. My mother treated me with Kefir (fermented dairy, extremely high in histamine) in hopes that it would help my "colitis." It made everything worse and I was hospitalized.
  • In the last 5 years, I have noticed "colitis"-like symptoms start appearing in the late summer months that I would spend 15 hours/week in the sun. As stated above, that sunburn would cause heightened histamine.
  • Since starting daily antihistamine (approved by my doctor) I have gained 20 pounds, and my current weight of 146 is the most I've ever weighed. I am 18.
  • My brother has been in a diet-controlled "remission" since April, and upon figuring this out, we have given him antihistamine when noticing redness in the eyes or other symptoms such as discolored stool and fatigue. Said antihistamine has cleared them up perfectly.
  • The American Journal of Clinical Nutrition clearly states the connection between "histamine intolerance" and gastrointestinal disease. http://ajcn.nutrition.org/content/85...8-a57b0f8c1c32 "Besides headache, gastrointestinal ailments including diffuse stomach ache, colic, flatulence, and diarrhea are leading symptoms of histamine intolerance"
  • I have also noticed a correlation with seasonal allergies and worsened GI symptoms; cedar is a pollen that I'm actually allergic to (and that is DEATH in central Texas), and higher systemic histamine levels have seemed to cause worsened symptoms overall.

Oddly, Zyrtec was at one time a proposed cause of colitis. http://www.ehealthme.com/ds/zyrtec/colitis But what I'm thinking is that maybe Zyrtec isn't the *cause* of colitis, but more that a small number of people have discovered that Zyrtec has improved their symptoms and are therefore taking it daily. Follow what I'm saying?

Also, interestingly, both of my parents have A- blood (around 6% of the population have it), which means *both* of my parents having it is a fairly rare occurance as well. I don't know what to think about that. (0.36% for those that do math.)

Basically, I just want this thread to serve as a discussion of one of the potential causes of colitis and Crohn's. Unregulated histamine will cause systemic body-wide inflammation, including the gut.

I'm not denying that I have "colitis" or "Crohn's" (my initial diagnosis was "indeterminate colitis," colitis literally meaning "colon inflammation" for that that aren't aware) but I am suggesting that what would have otherwise been treated with immune suppressors is easily controlled with antihistamine in my case. There's a very good chance that your colitis/Crohn's was not caused the same way, but I'm just trying to bring another possible cause to the table.

I refused to accept immune suppressors and mesalamine as the answer to my problems, and I think you should do the same. Take them if they're all you know to do, but put some time into figuring out what really caused your "disease" and try and problem-solve your way out.

The research continues...

Last edited by Stephen; 02-19-2013 at 09:20 PM.
02-19-2013, 07:54 PM   #2
Stephen
 
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I would like to invite Gianni and David to this discussion
02-19-2013, 10:44 PM   #3
David
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Was your original diagnosis Crohn's disease, Ulcerative Colitis, or Colitis? And how were you diagnosed? Colonoscopy?
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02-19-2013, 10:48 PM   #4
Stephen
 
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Was your original diagnosis Crohn's disease, Ulcerative Colitis, or Colitis? And how were you diagnosed? Colonoscopy?
Colonoscopy, and it was "indeterminate colitis." According to what he told me, my small intestine was fine as far as he could tell, and the inflammation of the large intestine was patchy.
02-19-2013, 10:49 PM   #5
David
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I suggest you research mastocytic enterocolitis.
02-19-2013, 10:55 PM   #6
Stephen
 
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I suggest you research mastocytic enterocolitis.
Thanks a lot! This is the first time I've seen the name describing exactly what I suspect is the problem here. I wonder how many people have a "Crohn's" or "colitis" diagnosis that may actually have some form of this? Is that likely/possible?
02-19-2013, 10:57 PM   #7
David
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While it's possible, it's probably not too common as Crohn's and UC biopsy results are usually quite telling. Multiple balls would need to be dropped to get a Crohn's or UC diagnosis when you only have ME. I do however suspect that a subset of people with IBS in fact have Mastocytic Enterocolitis.
02-19-2013, 11:06 PM   #8
Stephen
 
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Are there any well-known members on this forum that have been diagnosed and/or suspect that they have mastocytic enterocolitis?
02-19-2013, 11:09 PM   #9
David
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Well-known is hard to quantify and is subjective but there are definitely members here who have been diagnosed. At the bottom of that wiki entry there are threads where people have discussed it. Or use the search function at the top and threads will come up as well.
02-19-2013, 11:14 PM   #10
Stephen
 
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Well-known is hard to quantify and is subjective but there are definitely members here who have been diagnosed. At the bottom of that wiki entry there are threads where people have discussed it. Or use the search function at the top and threads will come up as well.
Alright, thanks for your help David! Much appreciated.
02-24-2013, 12:48 AM   #11
Hope345
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Stephen,
Just saw your thread. VERY interesting.
Hope the antihistimines are the cure you needed.

I might consider trying it for our daughter. It could not hurt!!!
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
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02-24-2013, 09:40 AM   #12
Ihurt
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interestingly I have had to be on zyrtec for the last couple years and I noticed all my gut issues kind of started after I started taking zyrtec. Unfortunately, zyrtec is the only antihistamine that helps me with my allergies I have.. But if you want my opinion, I think ANY drug can cause colitis, ALL drugs are poison to the human body. I also have a slew of other health issues. I have had to be on low dose antibiotics to prevent the severe UTIs I was getting. I am almost certain that the antibiotics I have been on also are messing up my intestines as well. Most diseases are usually man made In my opinion( from drugs, foods with pesticides, GMO's, etc....). I mean back in days before antibitoics and drugs were discovered, you never heard of a lot of these issues and if they were around, it was Rare! I mean for instance, you never heard of kids dropping dead from sniffing a peanut, but now it is wide spread. My husband who has been teaching for the last 12 years said that in just the last three years the cases of severe allergies has quadroupled.

Here is another inetresting thing. Some kids who are severely allergic to like peanuts or corn, well when they were taken off of the genetcially modified versions of these foods, later on they were able to introduce these food back into their diets, only they were Not genetically modified, they were whole organic and suprisingly they had no allergic reactions to them in their whole form...

So basically we in a generation where we have to keep inventing drugs to help with these orphan diseases that are on the rise, but the only thing that is does is that the drugs create more diseases in the form of side effects of these meds. They try and fix one thing( or should I say put a bandaid on it) only to cause yet another issue. I mean I know, I am living proof! Here is my own case. I got sick 9 years ago after catching a nasty virus after I got a flu shot. Well my health went down hill after that. Had tons of health issues. Well I eventually got a disease called IC of the bladder. Then I started getting infection after infection. Well I was in complete hell. So then I was put on antibiotics. Had bad allegic reactions to most antibitoocs. Was put on zyrtec to help counter the side effects of the antibitoics. Intestines started bothering me some after I went on the zyrtec. I mean I also think the antibitoics that I have had to be on over the years is also a HUGE reason my intestines are messed up as well. But you see, they try and fix one thing and it only messes something else up. Drugs are poison and there is almost always going to be consequences when you take meds.

Bottom line: drugs and the blessing and the curse!
02-24-2013, 10:38 AM   #13
Sybil Vane
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I really like these posts where folks share new information and try different things. I do however cringe at lines like these: "I refused to accept immune suppressors and mesalamine as the answer to my problems, and I think you should do the same." Unfortunately, for folks like me who hate that the only thing that's worked is immune suppressing drugs like Humira, it feels a little judgmental. It's also not a good idea to recommend folks ignore their doctors. But please know I thought your discussion was very interesting and I'm glad you've shared it with us. My father and I are the only ones in the family with allergies and we're the ones with Crohn's disease. I always wondered if there was a connection. I have noticed, though, that if I take anything beyond a nasal spray like Nasonex to help my allergies, it makes my D a lot worse.
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02-24-2013, 10:48 AM   #14
JMC
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I have mentioned before that I thought anti-histamines caused me significant problems, but it is hard to correlate and when I asked about it on the forum, on one else seemed to have suffered similar problems.
04-13-2013, 05:15 PM   #15
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Stephen, Continued good luck and best wishes on your health "journey." I applaud your research, and your tenacity! Keep at it! You are your own best advocate and the fact that you are so involved and curious about your health (and your family's health) is a wonderful thing. Did you ever consider a career in research, or medicine? You would be an asset to the field.

If it's of any interest, my GI specialist, as well as two ophthalmologists (for my severe dry eye), put me on Omega 3's ten years ago and it has been helpful with inflammation (ancillary arthritis & dry eye for sure), and, perhaps?, my Crohn's as well.

I am on Nordic Naturals Ultimate Omega fish oil tabs, 4 pills/day: pharmaceutical grade, highest purity, 3rd-party tested for toxins/metals, etc. I'm not saying that it's for everybody, but I can say that it's really helped two of my inflammatory situations. I chose to try it over starting on Restasis steroid eyedrops because all the meds add up and I just try to avoid them whenever I possibly can. There is some clinical evidence regarding Omega 3's that my Gastroenterologist believes is very promising and worthwhile.
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IBS since my 20's; Crohns 2001 @ 41
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04-21-2013, 04:58 PM   #16
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I started taking claritin a month ago for mild pollen allergies. I was surprised at the benefits for my ileitis. I too researched histamines out of curiosity.I am now considering taking this as a regular regimen after pollen season has passed.
I also take omega 3 krill oil.I had a small bowell resection years ago and my symtoms are present but mild. I do not eat any fast foods nor procssed meats. The fast foods are truly fast foods. I also eat no iceburg lettuce, popcorn nor any nuts. Occasionally I eat pizza. I drink a glass of chocolate milk everyday.
04-21-2013, 06:14 PM   #17
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Thanks for sharing your experience Stephen. I googled and found this article which states that histamine is elevated in Crohn's and UC in addition to allergic enteropathy. My son recently asked for Claritin for allergies. I'll be interested if it improves his Crohn's.

http://www.karger.com/Article/Abstract/237129
Mucosal Histamine Content and Histamine Secretion in Crohn’s Disease, Ulcerative Colitis and Allergic Enteropathy

Raithel M.a · Matek M.a · Baenkler H.W.a · Jorde W.b · Hahn E.G.a
a1. Department of Medicine, Institute of Clinical Immunology and Allergy of the University Erlangen-Nuremberg andbAsthma Clinic Mönchengladbach, Germany
Int Arch Allergy Immunol 1995;108:127–133 (DOI:10.1159/000237129)


Abstract
Histamine exhibits various biological effects in inflammatory and immunological reactions. To further define its potential role in allergic enteropathy and inflammatory bowel disease, both gut mucosal histamine levels and histamine release from endoscopic biopsy samples were measured. Tissue histamine content resulted from addition of the released amount of histamine and the remaining part of tissue histamine. The results demonstrate highly elevated mucosal histamine levels of the large intestine in allergic enteropathy. In inflammatory bowel disease histamine content and secretion were found to be significantly increased particularly in affected mucosa of Crohn’s disease and ulcerative colitis than in unaffected tissue or in healthy controls. These findings give strong evidence that mast cell mediators like histamine play a role in the pathogenesis of these diseases. Mucosal histamine is thus concluded to contribute to the immunoinflammatory reactions of the intestine found in these disease states and to reflect the degree of colonic inflammation in Crohn’s disease and ulcerative colitis.
10-20-2014, 10:04 AM   #18
mf15
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Thought I would add some other info to this thread.


We all know SCD and Paleo diets, helps some people,and exclusion of wheat helps some.

Yet normal allergy testing may not show much.

Ok where am I going with this.

Zyrtec is a histamine 1 receptor blocker,other newer antihistamines may block H2, or even H3/H4.

It also has other anti-inflammatory properties.

http://en.wikipedia.org/wiki/Cetirizine



We can block the H1 receptors on cells but the mast cells are still degranulating, releasing histamine and all kinds

of other stuff,including TNF-ALPHA. So enter mast cell stabilizers.

http://en.wikipedia.org/wiki/Mast_cell_stabilizer



disodium cromoglycate UC trial did not work, what is going on here

http://www.ncbi.nlm.nih.gov/pubmed/105970



Perhaps we need to do both,inhibit and stabilize, it seems to work in this person

http://onlinelibrary.wiley.com/doi/1...6005458.x/full



So you have been on SCD and Paleo and eliminated wheat,and your allergy testing is negative

or only a little reaction,and you still have UC.

Enter the COLAP test,which I might suspect few if any here have had.

One UC person had zero response.

What does this mean,perhaps has nothing to do with real UC,or perhaps they did not use the right

allergen,or only a subset respond.

http://www.ncbi.nlm.nih.gov/pmc/arti...00039-0059.pdf



here is a more modern case study of mast cells and antiallergic drugs in UC

http://www.hindawi.com/journals/ulcers/2013/714807/



since cant get cromoglycate except as nasal or eye drops as a mast cell stabilizer

quercetin may act the same

http://webcache.googleusercontent.co...&ct=clnk&gl=us



this guy says cromoglycate not a true stabilizer

http://www.mastcellmaster.com/research.php




not the number but the function

http://www.mastcellmaster.com/docume...s-Sci-2014.pdf




mast cell nerve axis

http://www.sciencedirect.com/science...2544391100130X




H4

http://openventio.org/ArticleinPress..._GOJ_1_103.pdf



So bottom line, WHAT IF.

My story of the day.



Old Mike

PS: Mast cells also release proteases. Protease inhibitors also work on UC.

Last edited by mf15; 10-21-2014 at 06:00 AM.
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