Allergic reaction today- almost went to the ER!!!

MeSci

ME/CFS since 1995; activity level 6?
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It's absurd that any colourants or flavourings are added to medicines. Some other common ingredients represent ethical problems, as they include:

lactose - unacceptable for vegans, lactose-intolerant people - not sure whether it's Kosher?
gelatine - unacceptable for vegans and vegetarians, and often derived from pig material so also unacceptable to many Jewish and Muslim people.
sugar or artificial sweeteners - for example, Imodium liquid contains this lot:
Carboxymethylcellulose sodium, cellulose, citric acid, D&C yellow no. 10, dimethyl siloxane, FD&C blue no.1, flavour, glycerin, methylcellulose, propylene glycol, purified water, simethicone, sodium benzoate, sorbic acid, sucralose, titanium dioxide, xanthan gum.

When I needed something for diarrhoea once, I had a choice between Imodium capsules or tablets containing animal products, or Imodium liquid which was so disgustingly sweet that it almost made me vomit! I actually could not drink it.

I don't expect medicine to taste nice - I just want to be able to swallow it quickly without also taking in animal products or unnecessary chemicals.
 

zzz

Senior Member
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@zzz I was wondering re: googling meds to find out what dyes are in them- my husband found a website called "Daily Med" (from the NIH) in which you can get the full drug info. Is this the site that you use when you get the prescribing info?

No, I had not come across the DailyMed site before. It is an excellent site, and I wish I had come across this years ago! Please thank your husband for me.

I think that many people will find this site useful. On the main page, and many other pages, there's a big search box where you can type in the name of the drug you want to check. If you type in the brand name, it will give results for the brand name version(s) only. If you type in the generic name, it will give you results for all forms of the drug, both brand name and generic. It even has a suggestion drop-down box to help you get the name right.

If there is only one result for your search, as is often the case with brand names, it will take you straight to the drug page. If there are multiple results, you just pick the one that matches the manufacturer named on your pill bottle, and this will take you to the drug page.

On the drug page, there is the full prescribing information, broken down into the standard numbered sections, but with each section collapsed. "Ingredients and Appearance" is typically the last section; you just open it up, and you'll get all the information you need. You can of course open up any other sections of interest. The "View All Sections" link at the top opens up all sections, giving you the full prescribing information on one page. Right above that link, on the right side, you can also click on "Print Drug Label Info". This doesn't actually print anything, but it displays the prescribing information in standard form, just as you would find on the package insert. You can of course print it if you want.

Finally, directly above "View All Sections" is a heading entitled "Download Drug Label Info", with links for PDF and XML. If you click on the PDF link, you get a nice PDF file of the prescribing information.

There are different selections at the top for healthcare professionals and patients, but they appear to provide the identical information.

On the main page is the following disclaimer:
This website contains 72372 drug listings as submitted to the Food and Drug Administration (FDA).
At the present time, this Web site does not contain a complete listing of labels for approved prescription drugs.

The site may not contain some extremely obscure drugs, but it contained everything I looked for, and it seems to be the most comprehensive single site for information on all FDA-approved drugs. I will be using it from now on as my main source for drug prescribing information.

If you just want the ingredients for brand name drug, then Googling "<drug name> ingredients" is the fastest way to find them, as the ingredients come up directly at the top of the Google search. But if you want the ingredients for a specific generic drug, or any other drug information, DailyMed seems to be the place to go. In almost all cases, it should eliminate the need to call your pharmacy for information.
 
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Gingergrrl

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@zzz We are on the way to chiro appt but wanted to respond that you had much better luck with that website than I did!

I got immediate results for Valcyte b/c I take the brand but I was unable to find my generics (6-7 other meds.) I tried for thyroid med, Famvir, Atenolol, and pain med, etc, to no avail and they had nothing under manufacture that I use. For other meds they had manufacturer but not the right strength of pill.

I gave up at that point and did not try for the Potassium and other meds and just called CVS who are fixing print outs for me. I suck at anything involving technical skills!
 

Gingergrrl

Senior Member
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16,171
Instead of creating a new thread I thought I would update this one that on Thurs night I had another reaction to a dye, this time a red dye called "Carmine" that was in a supplement that I have taken several times for hypoglycemia.

Within minutes of taking it, my face and neck got red and my throat got scratchy. But unlike the other reaction, I did not get hives and my skin did not get hot and it did not progress to my arms and legs. I took Zyrtec and it got better but it was still very scary and I started to panic b/c I was alone when it happened.

It is not a supplement that I take daily but I have taken it at least ten times in the past with no reaction so I don't know what is going on!!!

My doctor is certain it relates to my high histamine test back in Dec (which was prior to my two reactions to food dyes) and that I need to be on histamine blocking meds daily and mast cell stabilizing meds to prevent these acute episodes and also help the possible chronic issue of mast cell activation or degranulation.

I will be discussing this further with him but two of the meds we discussed back in Dec were to take Zyrtec and Zantac daily but Zantac (at least in the US version) has yellow and blue food dye called "Aluminum Lake" which is in the "Very high risk" category that I am supposed to avoid from the Tartrazine allergy website so it looks like I cannot take it.

Why do histamine blocking meds have these food dyes in them? Even Benadryl has a red food dye but at least they make a dye free version which I have been trying to find. I am getting scared to ingest anything while I am alone. It is so hard to eat b/c I never feel hungry combined with my shortness of breath and now fear of these allergic reactions.

Does this sound like a mast cell disorder? What is the best website to read for this issue and why am I suddenly getting this issue now when I did not have it before?
 

Sushi

Moderation Resource Albuquerque
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My doctor is certain it relates to my high histamine test back in Dec (which was prior to my two reactions to food dyes) and that I need to be on histamine blocking meds daily
Note: there are 3 (or 4, I believe) types of histamine receptors. Each type of drug usually blocks only one, maybe two. Zyrtec and Zantac each block separate ones, so it might be good to clarify with your doc which ones he thinks need blocking and then research it on the internet. I need to block as many as I can but am not willing to take Zantac.
 

Gingergrrl

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16,171
@Sushi when you said you are not willing to take Zantac is that b/c of the food dyes or for another reason? I was just curious! Thanks!
 

WillowJ

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Carmine is in a lot of natural products, especially makeup, but it's also used as a food color. It can be made from aluminum and ground beetles, and is known to be high-risk as an allergen.
http://en.wikipedia.org/wiki/Carmine
(sorry, not meaning you should have known, but not sure why they put this stuff in supplements for people who already have health problems)
(edit 2: also meaning because it's a high-risk item, hoping that makes you feel better about there being still some things left in the world that you can eat)

I am getting scared to ingest anything while I am alone.
That's understandable, but do you still have some safe foods you can rely on?
 

dannybex

Senior Member
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Seattle
It is not a supplement that I take daily but I have taken it at least ten times in the past with no reaction so I don't know what is going on!!!

My doctor is certain it relates to my high histamine test back in Dec (which was prior to my two reactions to food dyes) and that I need to be on histamine blocking meds daily and mast cell stabilizing meds to prevent these acute episodes and also help the possible chronic issue of mast cell activation or degranulation.

I will be discussing this further with him but two of the meds we discussed back in Dec were to take Zyrtec and Zantac daily but Zantac (at least in the US version) has yellow and blue food dye called "Aluminum Lake" which is in the "Very high risk" category that I am supposed to avoid from the Tartrazine allergy website so it looks like I cannot take it.

Why do histamine blocking meds have these food dyes in them? Even Benadryl has a red food dye but at least they make a dye free version which I have been trying to find. I am getting scared to ingest anything while I am alone. It is so hard to eat b/c I never feel hungry combined with my shortness of breath and now fear of these allergic reactions.

Does this sound like a mast cell disorder? What is the best website to read for this issue and why am I suddenly getting this issue now when I did not have it before?

It is absolutely crazy that artificial colors and flavors are added to anything, let alone meds that are supposed to help with allergic reactions or intolerances. Just crazy. But look at some of the idiotic comments on Amazon for some OTC meds or supplements, and you'll see a lot of people commenting on how they love the 'bubble gum flavor'. Or complaining that they get 'fish burps' when they take a fish oil capsule.

Sigh.

I don't know enough about mast cell disorders, but perhaps @soulfeast could comment here. I'm 99% certain I have a histamine issue (after 9 months of increasing symptoms, and years, maybe decades of eating high-histamine foods or (new to me), histamine-releasing foods), but not sure if my situation would qualify officially as a "mast cell disorder". And kind of not sure if I want or need another diagnosis, as I'm hoping I can lower my histamine levels through diet, increasing DAO activity, and methylation to lower the levels like @Athene did about 2/3rds of the way down this page:

http://forums.phoenixrising.me/inde...rant-does-that-mean-undermethylated-too.9425/

As to why this is happening now, I think it goes along with the 'bucket theory'. We can tolerate things for years and years, but if we're not detoxifying them well enough, they may build up, the bucket becomes overloaded, and we either start having worsening reactions, or a sudden crash.

I moved into a new apartment almost 2 years ago, and was "fine" for the first year, but have tanked during the last 9-10 months. The apartment is supposed to be "green", but it has a lot more carpeting than my last place, and my unit is right across the hall from the laundry room, with all it's crappy scents, and an air "freshener" I've been battling w/the management to remove since last June. But that's another novel. Suffice to say I just found a half-dozen studies connecting perfumes and fragrances to histamine release.

Anyway, FWIW, I hope some of this is helpful.
 

Kyla

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Hi @Gingergrrl
Sorry to hear about your allergy troubles and scary reactions.

I hope I am not repeating what was already said as I didn't read every reply.

There are a couple different kinds of allergies and sensitivities.
Some of them can be tested for, and it might be helpful to get some answers.
I'm not an expert, but I have...well all of them, so I'll try to sum up what I've been told or read, and hopefully not get it wrong :p

1) "true" IGE allergies - these are the ones an allergist/immunologist can test for with a scratch test. It helps if you can narrow it down as they obviously can't test you for everything. They generally just do a panel of the most common ones. These are also the kind that you can (possibly) have an anaphlactic reaction to, but also include things like dust and cats.

2) contact allergies - an allergic reaction you get through skin contact. A dermatologist can look for this through patch testing (you have to leave it on for several days, so it's not much fun). These often manifest as rashes on your hands, face or neck.

3) mast cell mediated responses - Angioedema, Mastocytosis, MCAD etc
These can be to the normal allergens you are familiar with, or to things like heat, friction etc. makes it annoyingly impossible to figure out what is triggering it in many cases. I have angioedema which is the kind where you get swelling (eyes, lips, hands etc) and hives. Mastocytosis is super-duper rare. MCAD or MCAS (same thing)is a new diagnosis and is one of those things your doctor may or may not "believe" in - like ME! Or the Easter bunny ;) I ran into this with my immunologist. I have every single symptom, and a bunch of related conditions, but the one mastocytosis test he ran was negative so we are done investigating that. Oh - and histamine intolerance - this is another possibility that I think roughly fits in this category, but your doctor may or may not think it is a valid diagnosis

4) sensitivities - usually a stomach reaction rather than hives or sneezing etc

Wow. That was a long message.
 

Gingergrrl

Senior Member
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16,171
@WillowJ @dannybex and @Kyla Thank you so much for all of the info and I need to read it in more detail before I respond (but am so appreciative!)

I have another update- I went over my histamine test from OMI from Dec 2014 and the number was very high like my doctor had said. Because of that test combined with the two recent reactions that I had to food dyes, my doctor feels that I do have a histamine and mast cell disorder that we need to start treating now and I agree.

I will be taking Zyrtec and Zantac every day BUT since the freakin Zantac has yellow & blue food dyes, we are going to have it made for me at a compounding pharmacy at 75 mg per pill.

I will also start taking Quercetin and Daosin and we just ordered them on-line. Has anyone ever taken either of these and recommend a specific brand or dose (for next time- since we already ordered it.) I will also be looking at the low histamine diet but not go overboard b/c then I will not eat anything.

I have two other updates but b/c they are off topic from this, I am going to put them in other threads.
 

Sushi

Moderation Resource Albuquerque
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I will also start taking Quercetin and Daosin and we just ordered them on-line. Has anyone ever taken either of these and recommend a specific brand or dose (for next time- since we already ordered it.)
I think a lot of us have taken quercetin at one time or another and quite a few daosin. There are several threads--here, here, and a few more. I've taken both and didn't notice much of anything but others have had some success I believe. I think Daosin is Histame in the US--or the other way around!
 

Gingergrrl

Senior Member
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16,171
It is absolutely crazy that artificial colors and flavors are added to anything, let alone meds that are supposed to help with allergic reactions or intolerances. Just crazy.

@dannybex I agree and this experience has been unbelievable to me. I don't understand why Benadryl has red food dye in it. I can't even grasp what genius came up with this plan!

I'm 99% certain I have a histamine issue (after 9 months of increasing symptoms, and years, maybe decades of eating high-histamine foods or (new to me), histamine-releasing foods)

What do you mean by high-histamine foods vs. histamine releasing foods?

but not sure if my situation would qualify officially as a "mast cell disorder". And kind of not sure if I want or need another diagnosis, as I'm hoping I can lower my histamine levels through diet, increasing DAO activity, and methylation to lower the levels like @Athene did about 2/3rds of the way down this page:

I didn't want another diagnosis either but am hoping this new information can help me. Supposedly the mast cells are in your joints (my husband saw this on-line too so don't have a good source) but what was interesting was in my severe reaction to Tartrazine, my knees and elbows all got bright red which are my joints! So there must be some connection. Also can you explain what you mean by DAO activity? Even though we just ordered the supplement Daosin b/c my doctor advised this, I am unclear what it means! I also tried to read the thread you linked re: methylation but got confused. In case it relates to histamine, I do not tolerate the methylation supplements at all.

As to why this is happening now, I think it goes along with the 'bucket theory'. We can tolerate things for years and years, but if we're not detoxifying them well enough, they may build up, the bucket becomes overloaded, and we either start having worsening reactions, or a sudden crash.

This makes sense to me.

Suffice to say I just found a half-dozen studies connecting perfumes and fragrances to histamine release.

Wow, I did not know this. My mom realized yesterday that some of my liquid soaps have Tartrazine in them (and they had not bothered me) but I assume I should get rid of them and not good to put on my skin now that I know I am allergic to it!

Sorry to hear about your allergy troubles and scary reactions. I hope I am not repeating what was already said as I didn't read every reply.

@Kyla Thank you and you are not repeating anything!

Mastocytosis is super-duper rare. MCAD or MCAS (same thing)is a new diagnosis and is one of those things your doctor may or may not "believe" in - like ME! Or the Easter bunny ;) I ran into this with my immunologist. I have every single symptom, and a bunch of related conditions, but the one mastocytosis test he ran was negative so we are done investigating that. Oh - and histamine intolerance - this is another possibility that I think roughly fits in this category, but your doctor may or may not think it is a valid diagnosis

What test did your doctor run? Did he actually test your blood histamine level? Mine was like three times above the upper limit and my doctor said it is very hard to get a positive on that test so combined with my recent symptoms, he has no doubt. I am sorry that your doctor does not believe in this diagnosis!
 

Kyla

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@dannybex I agree and this experience has been unbelievable to me. I don't understand why Benadryl has red food dye in it. I can't even grasp what genius came up with this plan!



What do you mean by high-histamine foods vs. histamine releasing foods?



I didn't want another diagnosis either but am hoping this new information can help me. Supposedly the mast cells are in your joints (my husband saw this on-line too so don't have a good source) but what was interesting was in my severe reaction to Tartrazine, my knees and elbows all got bright red which are my joints! So there must be some connection. Also can you explain what you mean by DAO activity? Even though we just ordered the supplement Daosin b/c my doctor advised this, I am unclear what it means! I also tried to read the thread you linked re: methylation but got confused. In case it relates to histamine, I do not tolerate the methylation supplements at all.



This makes sense to me.



Wow, I did not know this. My mom realized yesterday that some of my liquid soaps have Tartrazine in them (and they had not bothered me) but I assume I should get rid of them and not good to put on my skin now that I know I am allergic to it!



@Kyla Thank you and you are not repeating anything!



What test did your doctor run? Did he actually test your blood histamine level? Mine was like three times above the upper limit and my doctor said it is very hard to get a positive on that test so combined with my recent symptoms, he has no doubt. I am sorry that your doctor does not believe in this diagnosis!

He ran the serum tryptase test. It's what they use to test for Mastocytosis (which is when you have too many mast cells). Since this was low he was done with testing in this area, I don't think he believes in MCAD (which is when you have the normal number of mast cells but they degranulate inappropriately )

He gave me an angioedema diagnosis instead (based on some other blood tests - related to complement factor I think? )
It probably doesn't matter too much as the treatment is pretty much the same. (High daily doses of Antihistamines and/or mast cell stabilizers).

I had a terrible reaction to the first antihistamine, which I think might be the one you were prescribed (the names are different in Canada). It wasn't any of the listed side effects ... so who knows why. On a different one now
 

Gingergrrl

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16,171
@Kyla

He ran the serum tryptase test. It's what they use to test for Mastocytosis (which is when you have too many mast cells). Since this was low he was done with testing in this area, I don't think he believes in MCAD (which is when you have the normal number of mast cells but they degranulate inappropriately )

My doctor said that b/c my histamine test was so incredibly high and now I have had these two reactions to food dye, that he doesn't need to do a tryptase test and has seen enough to confirm it. But he is an ME/CFS specialist and a good percentage of his patients have this issue. Thank you for explaining the difference b/t mastocytosis and MCAD which I did not get until right now. You ROCK :star:.

I had a terrible reaction to the first antihistamine, which I think might be the one you were prescribed (the names are different in Canada). It wasn't any of the listed side effects ... so who knows why. On a different one now.

What was your reaction? The one I will be taking is Zyrtec which in Canada is called Reactine (and the active ingredient is Cetirizine.) It saved my life in the first food dye incident and we were half way to the ER but turned around b/c the Zyrtec had worked so well. The other one I mentioned is Zantac (no clue what it might be called in Canada) and the active ingredient is Rantinidine (not sure if spelling that correctly.)

What was your bad reaction/side effect and which med was it?
 

dannybex

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@dannybex I agree and this experience has been unbelievable to me. I don't understand why Benadryl has red food dye in it. I can't even grasp what genius came up with this plan!

What do you mean by high-histamine foods vs. histamine releasing foods?

This 'histamine-releasing' or also called 'histamine-liberating' foods was new to me as well.

There are many lists of high-histamine foods online, and also it's important to know that histamine levels can increase in many foods if they're not eaten soon after cooking them (or in the case of some fruits, it they get too ripe). So leftovers, especially leftover meat, has a much higher histamine content. And because my energy levels have dropped so low over the last 4-5 years, I've been eating leftovers for years, and relying on them more and more -- a catch-22.

But I wasn't aware that some foods have been shown to release stored histamine. Foods like oranges, lemons, limes, alcohol, chocolate, tomatoes, etc.

From this full-text study on histamine and histamine intolerance (a really good overview):

http://ajcn.nutrition.org/content/85/5/1185.long

"In addition to histamine-rich food, many foods such as citrus foods are considered to have the capacity to release histamine directly from tissue mast cells, even if they themselves contain only small amounts of histamine."

And here's a good interview with a food intolerance expert, Dr. Janice Joneja. She talks in user friendly terms about histamine intolerance, and histamine-releasing foods:

http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-transcript/

It seems overwhelming at first, but I think the main thing is to cut back on meats, fish, and leftovers, and then look to see if you're eating or have eaten a lot of histamine-releasing foods, and try to cut back on some of those as well. That may make a difference in itself. I'm just starting this in the last week or so…



[COLOR=#000000]I didn't at first either (a few years ago) at all, but started out with really, really tiny amounts of methylfolate and some methylb12 -- and would stop for a few days -- then try them again -- then stop for a month or two or three -- but finally got to where the methylfolate actually helps me sleep! And yet four years ago the methylation supps made me wired out of my mind. (But I think my doc at the time overprescribed them, along with some other things that just overwhelmed my system. The other possibility was that methylation had been blocked for so long, then when it was 'unblocked', it started detoxing stuff that my body couldn't handle?).

Anyway, I know this is easier said than done, especially since your reactions seem more acutely severe than mine, but try not to freak out. You've learned a lot about that tartrazine already, so that's huge. There seem to be a lot of different chemicals that can cause histamine (and other things) to be released -- a definite connection between MCS and histamine intolerance. But "intolerance" seems to be kind of misleading. Perhaps some of the excess histamine is just the body's way of trying to fight off the many chemicals in our environment, in our foods, etc. -- or is a result of being exposed to too many chemicals, buggers, infections, etc.?

Regarding perfumes, etc. I didn't know it either, until this afternoon. As I mentioned above, I live right across from a laundry room, where they finally took out the air "freshener", after many complaints. But then today, I discovered it had been put back in, so I immediately googled "air freshener" and histamine, and came up with several studies that showed a link between perfumes, fresheners, etc., and histamine.

The second link on this google search is in Word document format from the University of Texas, and has several studies in that one document:[/COLOR]

[URL='https://www.google.com/?gws_rd=ssl#q=histamine+%22perfume%22']https://www.google.com/?gws_rd=ssl#q=histamine "perfume"[/URL]

As for mast cells -- yes, I believe they do affect the joints and bones, but so does histamine, because histamine is released by mast cells. But mast cells are not just in the bones or joints, they're in elsewhere in the body, because they play a role in immune function and defense against -- chemicals, pathogens, etc.

[url]http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/[/url]

Here's wiki's page on mast cells:

[url]http://en.wikipedia.org/wiki/Mast_cell[/url]

If you're wondering about histamine and a symptom, or mast cells and a symptom (or either one and say, a particular food or chemical), then I a google search will probably help clarify if there's a connection.

I'm still rusty on the DAO enzyme, but I think it requires vitamin C, copper(?) and the active form of B6. Rich Vank posted some info on PR about histamine a few years ago.

Complicated, and complex, [B]but fixable[/B], in the long run.

Klunk. :)
 
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Kyla

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@Kyla



My doctor said that b/c my histamine test was so incredibly high and now I have had these two reactions to food dye, that he doesn't need to do a tryptase test and has seen enough to confirm it. But he is an ME/CFS specialist and a good percentage of his patients have this issue. Thank you for explaining the difference b/t mastocytosis and MCAD which I did not get until right now. You ROCK :star:.



What was your reaction? The one I will be taking is Zyrtec which in Canada is called Reactine (and the active ingredient is Cetirizine.) It saved my life in the first food dye incident and we were half way to the ER but turned around b/c the Zyrtec had worked so well. The other one I mentioned is Zantac (no clue what it might be called in Canada) and the active ingredient is Rantinidine (not sure if spelling that correctly.)

What was your bad reaction/side effect and which med was it?

yes, I have seen a lot of info relating MCAS to ME/CFS. In retrospect I think this was one of those doctors I shouldn't even have mentioned the ME/CFS diagnosis to. He was nice, but I think perplexed by me. Couldn't understand why I am not able to work, and asked if I am "independently wealthy" :lol:
Here is a reputable site that has good info on MCAS and all the other Mast cell disorders:
http://www.mastocytosis.ca/masto.html

Cetirizine (reactine) is the one I was on. I don't want to make you reluctant to take it though. I often have weird reactions to meds especially in high doses (this was the equivalent of 4 normal pills).
Description might be TMI for some people, so skip if you don't want to hear about bowel issues.
I had painful bloating, cramps, constipation, nausea and gained 5 pounds in a few days. I was initially sure it was a gluten reaction as I have Celiac as well, (there is sometimes wheat starch etc used in pharmaceuticals, it is super annoying). but double checked with the pharmacist and switched brands etc. when I went back on it the same thing happened, couldn't go to the bathroom without a ton of laxatives, constant bowel pain etc. None of these are listed side effects, so I have no idea why, but both times I stuck it out as long as I could and then gave up, symptoms went away within a few days both times. I take Desloratadine now and have no problem with that
 
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