Antihistamines & Chrons/Colitis

garylouisville, if you DON'T take the DAO, do you find the histamines affect your UC? Excited to talk with someone with similar circumstances?

I agree DAOsin is wonderful. I suppose it would depend on ones sensitivity level and if they want to make the frequent supplementation, how much they restrict their diet.

Right on soystud. I agree that I would rather restrict our diets to aid healing and live without the pill monkey on my back. DAO doesn't block anything though; it's an enzyme that the body *is supposed* to make enough of to break down histamine. With an excess histamine, more DAO is helpful.

We had been just using it in combination with a low histamine diet, but since my son's been so sick I have been giving it to him more often to aid in ANY histamines breakdown (histamine...inflammation...UC).

simplified:

Absolutely! There were certain foods and other things which were high in histmamines (which I did't know) and after ingesting them I would get bloody diarrhea 10-20 times just in the next few hours - very miserable. I eliminated them from my diet. One day I decided to do a search on the things which I identified as causing me severe problems. The main ones were pizza, cheddar cheese, certain fruits and fruit juices, and the yeast probiotic Florastor. Since this was a very wierd variety of things I was hopeful that I could find something that was common to all of them. After much research I could only find ONE thing that was common to all of them - they were all either high in histamines or they increased histamines in your body. Bingo! After further research I discovered DAO and ordered some. I have to tell you that I was absolutely scared to death about the first test - taking the DAO and then purposely eating Pizza one day and cheddar cheese the next. I was absolutely astounded that I ate them with zero problems and my UC was no different than what I experienced the rest of the day. As an experiment I began taking more DAO to see if it would "cure" my UC. It did not but it did allow me to eat high histamine foods again without it worsening my UC. Now eating Pizza, Cheddar Cheese, and fruits is no different than eating other foods. I take 2 DAO every meal and more when I know I am eating higher histamine foods.

Old Hat, what is it that minimizes your insect/pollen reactions?

Yes, we've only used antihistamines for "emergencies", knowing that in the long run antihistamines can actually lead your body to produce more histamines. They don't solve the problem, which is what I'm interested in.

GARYLOUISVILLE, YES!!! I'm not crazy! I knew I wasn't, but when all I had was a food journal and my "research" up against the docotrs (and my husband), yap start to doubt yourself.

So past two night my dear son has been in AWFUL pain, tears. He hasn't been eating again so has lost more weight. And he certainly hasn't been sleeping well. I almost took him in. After he settled and went to bed I looked over his food journal and discovered that he hasn't taken any DAO in four days (we ran out). Nowe knowing he's got the histamine issue (as do I and my other kids) we don't eat even moderately high histamine rich foods at all. But past four days all I could get him to eat was scrambled eggs, gluten free chicken nuggets, white rice and banana pancakes. ..eggs, old meat, and bananas are all moderate/high in histamine. I propose his recent terribleness is the result of histamine accumulation over these last few days (thanks to you confirming histamine does indeed affect your UC!). He reminded me that in the hospital last week he.gained weight and was eating bacon and eggs every morning, not wanting to fight over bacon, I just gave him DAO with every meal there!!!

So today I will try to overnight some DAO. In the meantime, what kind of antihistamine would you suggest, H1 or H2? We have generic Claritin (H1) but I wonder if an H2 would be better??? God knows I haven't been able to find a doctor with a clue about this.

Yes, I was just reading about a fella where Claritin helped him stay in remission (every spring/fall allergy season) for a few years and then it stopped working. Frustrated and hopeful all at the same time.

I feel like I am in a race against time. My 13 year old is down to 68 pounds and we meet with the GI next Thursday. I don't think prednisone is doing ANYTHING and I really would like to have a game plan before going in there Thursday and having him recommend something outrageous that I am not comfortable with.

How long does prednisone take to work? He was on IV prednisone in the hospital for 5 days and has been home on 40mg oral for 9 days; still bleeding and D.

I just gave him a generic Claritin and the DAO should be here tomorrow.

Thanks soystud. He's super moody and irritable right now, probably from low blood sugar...and the prednisone...and the histamine level...and the condition of his body. :( I can't get him to eat anything GOOD, though he did ask for pizza. Not. Gonna. Happen. I know his body is just craving calories.

He was DX with severe pancolitis. I was reading about quercetin and astaxanthin...how is the astaxanthin working for you? You aren't on any "meds"? How did that come about? Thanks.

Simplified-- sorry to read about your son's problems. There are some pretty intrepid parents posting here so I hope they can help you. (Keylime hasn't posted in a while, but she has 2 children with UC in case you want to look up her old posts.) In the meantime, you asked about my insect bite/pollen remedies: luckily, I respond to topical Bendryl Extra Strength for insect bites-- the sooner I apply it, the better. (Calamine lotion also helps.) Pollen is more of a problem because my reaction to it varies; sometimes it dries out my mucosa excessively-- so I need to moisturize-- natural tears eye drops are a huge help with that & occasionally, saline nasal spray. At other times pollen gives me runny nose/eyes, itching palate or eustachian tubes, sneezing; this is tricky to medicate & my gastroenterologist prefers that I just take Sudafed at bedtime to facilitate sleep. The main precaution to take when one has UC: keep hydrated with plain water, basically, at all times. It can take steroids over a month to reduce symptoms of severe flares-- so it's not unusual that your son still has some bleeding & D. Encourage him to rest a lot because that helps the med to work more effectively. Have you looked at ccfa.org Website? They offer a lot of support to young IBD patients especially. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Simplified,

Welcome to the forum.

I am so sorry about your son suffering so much.

That sucks big time!

It's very hard to navigate the medical system when all they are prepared to give you are the big guns, big pharma, and surgery...IMO.

I am always so frustated at their pat answers: diet has no effect, or probiotics  don't help, or you must try these drugs.

Just wanted to share my story with you ( I won't make it too long), basically tried prednisone did nothing, mesalamines I developed an intolerance to and even prior to the intolerance they did nothing, then my doc gave me a choice of surgery or biologics and I said NO. And then found my own way, the hard way by doing all my own research, trial and error, etc...

Here's what helped me ( and I'm hoping it might help your son):

1) probiotics

2) slippery elm powder to coat the whole intestinal tract

3) l-glutamine amino acid powder for colonic repair

4) diet modification as in gluten and dairy free. PALEO diet.

5) bowel rest - when i was at my  worst, i would just do 4-6 protein shakes a day for  few days until things calmed down and it always worked. BTW there are studies out there showing bowel rest works as  well as some of the big drugs temporarily. Protein shakes consisted of Mercola's Pro-Optimal whey shake in chocolate made with almond milk - the recipe i like is Morning Glory Shake, to which I add liquid minerals and liquid vitamins among other nutrients. I like this particular Mercola product only because: it's essentially PALEO, grass fed cows, no hormones or  antibiotics and it contains digestive enzymes in it so I found it very soothing to my gut.

I understand the low weight issue with your son. But IMO, you have to fix the gut issues first, the symptoms first, and then you can address how to put weight back on him.

6)Maintaining good levels of vitamin d3. I make sure mine are at high 60's. I assume since you are well plugged in, you've already made sure your son's levels are high?

7) LDN, low dose naltrexone. THIS put me in remission. It is not a big pharma drug; it's cheap and has virtually no side effects.

If any of this interests you or if I can help you in any way ( feel free to email me),  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope your son  feels better and let us know how we can help you.

Simplified, have you looked into a mast cell stabilizer like ketotfen (don't know where you're located as I don't think this is available in the US) or gastrocom? There's a small study out of Sick Kids in Toronto which shows some efficacy in certain cases of ketofen treating UC and since your son has histamine intolerance issues this may be of some benefit. It does have some anti histamine action but it's primarily a mast cell stabilizer so prevents the creation of histamine (to a certain extent) in the first place.
What are your son's symptoms (non UC related).
There's a well known and researched connection between IBD and increased mast cell action/histamine production in the gut anyway, but curious as your son has histamine issues before the UC dx. Does he carry a MCAS dx?
http://www.researchgate.net/publication/13728377_Ketotifen_therapy_for_acute_ulcerative_colitis_in_children_a_pilot_study

simplified, has your son seen an allergist? My allergist tested for MCAD by doing the tryptase blood test. (It came back normal, so his explanation as to why I had developed so many food allergies post-UC was "bad luck.")