Mcas (Used To Be Called Mcad) Questions About H1 And H2 Reactions

[issie]

I recently have been trying to do the treatment for MCAS. Since reading the article on tagament and histamine and that making things worse if you have histamine sensitivity - I got some pepcid and tried it last night. I felt horrible with it. It gave me a horrible stomach ache and I didn't feel like I digested my food from supper. I know we have to have enough stomach acid to digest our foods properly and some alternative doctors think that reflux is caused by not too much stomach acid - but, actually not enough and us not digesting properly because of too low acid - not too much. That being said - since I've been trying to up the amount of Claritin I was using from one to 2 a day - I think it has made me MORE sensitive to histamine rather than less sensitive. I noticed that if I ate foods that are histamine releasers - like pinneapple - my reaction was actually worse than it had been before starting to up the H1 and H2's. Also, the reaction to exercise from histamine release is more intense too.

I tried this about a year ago and came to the same conclusion then - that H1 and H2's made my reaction more severe. I know this totally goes against what the MCAS docs tell you to do and what most people with MCAS actually do. But, I'm thinking that (for me) I do better if I wait and take them only when I feel a reaction coming rather than having them on board all the time.

I just wanted to get some feedback from some of you that are treating this and to see what you thought about my observations. I wonder if taking the H2's all the time isn't making some have worse GI problems in the long run. I know I do better if I take enzymes and probiotics and I have to do it a couple times a day and I also use a lot of Vitamin C and that will also tame down histamines. I'm thinking what I've been doing with supplements is/was helping me more than these histamines blockers.

Feedback?????????

Issie

[Maiysa]

Issie!!! I just read your post and it made me chuckle at myself, not because you had an awful experience but because it was extremely ironic that I had the same thing happen last night. Of course I'm better today to be able to laugh about this, although I do feel as if I was used a punching bag, but I lived. I was in pain last night and thought that maybe I wasn't taking enough of the H1 and H2. For me the Claritin works to keep the flushing down, but I have not been doing very good with the zantac. IT makes me feel a bit strange so I quit taking it. So last night I thought it might just be a coincidence with the zantac since it's working for everyone else. So I had a bright idea to not only try it, but take a slightly bigger dose. Well, within a few minutes I was laying in the bed with cramps, cramps I've never felt before, nausea and terrible acid reflux. Anyhow, I was up till 3 am moaning in pain. I'm also thinking it stopped my food from digesting and it was just stuck there. It was TERRIBLE. It felt like a rock was stuck in my intestines. So, yes, I will not be adding the zantac. My stomach feels so much better if I keep up with the juicing and putting a little bit of papaya and papaya seeds which are high in enzymes. I find this helps the gastric paresis. For me I sometimes have too much acid and sometimes not enough. I think it's about finding that balance.

And I do just fine with the Claritin. I am not understanding why. Before I got sick, I used to take Zantac just fine. Will have to ask the doctor about it when I go in May for mast cell. But am going to start the antihistamine diet on Monday. I'm already pretty much gluten free so there will just be some slight adjustments. But I think you are on to something, I think taking too much zantac or pepcid can hurt your stomach enzymes. I also read an Italian study a few years back that said people who are on these ant acids like pepcid and prevacid and zantac actually are more susceptible to virus's, cold's and to gut bacteria's because they are actually killing important enzymes and acids that protect them from all the above as well as important enzymes to help break food down. IT's always something to think about. Have a good healthy day.

[Katybug]

Hi issie,

I couldn't take Pepcid for my reflux. It made me nauseous and feel like I couldn't digest my food. I was able to use Prilosc for a while and then had to sitch to Nexium. I thought I was doing it for "reflux" but I now know that I have mast cell type issues from my C4a being so high and this was contributing to the reflux. (Right meds, wrong dx.) Now, my immunologist has me on a very low dose of hydroxyzine only at bedtime and 300 mg of Cimetidine (Tagamet) 3x/day. He wanted me on it 4x/day but that made me really nauseous. They have helped control the "skin" part of my issues...much fewer rashes and hives. I still have to watch food triggers.

It's a hard thing...it is possible you are having paradoxical reactions. The POTSY set seems to have plent of those, me included.

[issie]

Well, sounds like at least a few of us are not liking pepcid. Maybe a different H2. Like I said I had been using tagament until I read that article on being sensitive to histamine and tagament makes that worse. But, I seemed to be able to take it - but, it didn't really help that much either - so maybe - it wasn't helping with the MCAS stuff. So, will be trying a different H2 when I need it. Still not thinking I want to take the H2 all the time - just if things are real bad. And even though I can take claritin - maybe only once a day is enough for my system. I just don't want any more bad attacks like I've had before with the mast cell stuff. It's so hard to know what to do - when we react to meds - which is worse - the reaction to the meds or the problems we're trying to treat with them.

Just thinking I'll keep doing my probiotics and enzymes for now instead of the H2's. I read on a forum of mast cell people that is what some are doing and just using the H1's. See how that goes with lots of citrus free Vit. C and quercetin.

Issie

[Maiysa]

I'm with you Issie. I would rather feel like I feel without the H2, than how I felt last night. That was much worse. I didn't know that some just take the claritin. That is great to know. Thanks for the information. I also tried Vitamin C and I'm a bit vulnerable to the acid reaction it can have. But I think that might be because I take the chewable...maybe pill form would be better for me?? Also I have been reading about quercetin. Do you have reactions to this supplement?

Maiysa

[issie]

I have problems if things are from citris. If I get Quercetin from another source I'm okay with it. The only citrus I don't seem to have issues with is lemons. I try to use one fresh lemon a day in water - it is really good to keep your liver functioning better and to detox it.

Issie

[CharmedLinz]

Well yet another variable of opposites and similarities within this disease and Mast Cell stuff.

I can't tolerate Claritin, never been able to. About a week into I get intense un-relenting Vertigo that takes 3 days to subside after stopping the drug. I've tried it a few times and always the same so I know that it's the Claritin causing this.

I've been doing ok on Zyrtec every day for the past year. I don't really feel it makes a difference until I skip a day and then I can tell that it is helping somewhat.

However I just recently read about long term affects from Zyrtec and I'm not liking the information.

I also don't tolerate Chlorpheniramine well.

I do take either Benadryl or Hydroxyzine nightly.

As for the H2, I take Ranitidine 150mg 2x day. Sometime I switch it up with a Pepcid here and there.

For those that take cimetidine (Tagamet) please ask your pharmacist/Doctor/or google. Cimetidine has bad interactions with a bunch of drugs including Benzo's like Klonopin.

I've also noticed some GI symptoms with taking all these H1 and H2 blockers and I do believe it's because we need acid to break stuff down. I've found some relief by adding probiotics, a lot of enzymes, and Apple Cider Vinegar and Aloe Vera Juice have both helped tremendously.

Citrus of any kind usually has a bad effect on my stomach too, and Vitamin C gives me instant Migraines.

[issie]

Interesting - I reserve benadryl for my real bad reactions - because - it ALWAYS gives me tremors. I can take it - except I know I'm going to shake with it.

I like the enzymes and use aloe ocassionally and apple cider vinegar is my go to along with olive leaf if I feel like I'm getting sick.

I use a citrius free Vit. C - have you tried that? There is a source from sago palm.

Issie

[targs66]

Issie - I haven't tried Pepcid, so I can't chime in on that, but was interested in your theory that the other antihistamines were possibly making you more sensitive...

I take very low doses of Benadryl (the old version - diphenhydramine) at night. (I also take Benadryl Allergy - acrivastine - during the day - but have been taking it for almost a year now.) The diphenhydramine seems to help me sleep and calms me - I think I've been taking it about 2 months now. I have recently had real problems with itching skin. I can't see any hives, but I have this awful crawling sensation and terrible itching. I thought maybe it's b/c I'm taking the diphenhydramine at night - like maybe it's doing its histamine blocking thing and then when the histamine comes back I itch with a vengeance?? Then again, given it's springtime, maybe this is just an allergic reaction to all the pollen in the air???

It's all so confusing!!!

-Targs

[issie]

It could be the pollen and things in bloom. I'm having to use all the help I can get for allergies right now. I got zantec and along with claritin and nasalcrom - I'm doing okay. I also added Vit C and quercetin and an herbal called Respiration. And the allergy eye drops. This combo is working for me - but, I won't take all of it when the pollen count goes down. In fact, haven't had anything today and doing okay. I have to really watch what foods I eat. I've found that can be a major trigger for me.

Benadryl I reserve for whatever these other things won't touch - because it gives me terrible tremors and a nervey feeling. My allergies have to be really bad for me to use that.

Issie

[TCP]

I've not had a diagnosis of MCAS/MCAD or Histamine Intolerance, but my reactions to foods are getting much worse. I have EDS and POTS. I started to look into H1 and H2 and decided to try them for two weeks and maybe then go onto more natural supplements. I have only taken them for three days I feel very unwell, achey and fluey. My gut is upset. I will now try the Quercetin +C and various other recommended supplements. I am already on the low histamine diet. I will see how I go.