chronic urticaria trigger, aspartame

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urticariasucks
New Member


Date Joined May 2010
Total Posts : 2
   Posted 5/11/2010 2:28 PM (GMT -6)   
Hi,

Just wanted to share my hives story with everyone in case it can help in some way. I'm a woman who started with chronic hives (daily rash) 11 months ago, aged 34. It coincided with me buying some new wardrobes from Ikea - I don't know if that is what started it all off, but it does seem a heck of a coincidence.

The doctors were reluctant to do anything at first, saying it would burn itself out and I should just take antihistamines. I've discovered that a dose of cetirizine hydrochloride every day keeps the rash at bay, for the most part.

The rash I could handle, but when I started to get facial swelling I realised that the drugs just weren't enough. I wanted allergy testing but was refused it as I had at that point only had the hives for a few months. So I had to become my own detective. Why was my face swelling up? I was getting massive swollen lips, as if I'd had collagen implants, and my eyes would become disfigured, looking puffy and shrunken, sometimes as if I had been beaten up. It was horribly embarrassing having to struggle into work looking and feeling so weird.

I was tearing my hair out with frustration at why my face kept swelling up, and eventually I started looking at what I'd been eating and drinking, and reading the ingredients. After a few weeks of detective work I realised that aspartame was a trigger. I'd noticed that after drinking blackcurrant cordial I'd have an attack. I had an attack when I drank some Lemsip. I read the ingredients list and to my horror aspartame was listed. It's in loads of low-fat and diet products, and it's nearly impossible to buy chewing gum that doesn't contain it.

I went to see a consultant, told him my theory and he was surprised. He disappeared to look it up in a book and came back saying yes, aspartame CAN be a trigger for urticaria. He then discharged me, saying he was satisfied it was resolving itself. He told me to do an aspartame challenge, so I had to buy the sweetener, pop it into a glass of water, drink it and see what happened.

Nothing happened straight away, which made me doubt my theory, but a few hours later I had two puffy, swollen black eyes so I knew then that aspartame was the culprit. Since then, I've been avoiding it like the plague but of course I do still get swollen lips/eyes on occasion - usually if I've been out somewhere and have taken a risk with the menu. The rash is almost 100% gone but only because I'm taking the antihistamine. It comes back if I stop. I don't want to take antihistamines for the rest of my life, but for now I suppose I have to.

I'll be going back to the doctors at some point to give them an update but I do feel that they are a bit stumped when it comes to chronic hives. Anyway, hope this hasn't been too longwinded and boring - if my story helps just one person, it's worth the effort! :-)

NDTJ
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/15/2010 2:01 PM (GMT -6)   
I was recently diagnosed with CU, after 5 years of seeing different specialist and after 3 different diagnosis of JRA; Still's Disease and Vasculitis; I stopped seeing those doctors and found new doctors that tell me I have this CU. These new physicians are really good, because the testing they are conducting is very much different than previous tests and the results show that I really did not have any of the previous illnesses. I currently take Clarinex and Zantac; the new specialists want to do a biopsy with some genetic blood work. I don’t know what triggers this, very difficult because I’m married with 2 young boys. Have you done a biopsy yet? Is there a cure for this?

lumpy butt
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Date Joined Mar 2010
Total Posts : 18
   Posted 5/18/2010 7:02 AM (GMT -6)   

There is no cure for this, just various drugs. The Urticaria can go into relapse and leave as fast as it came. ( wish mine would !)I have explored this stuff ever since I have had it (10 months) and like the rest of us,I am taking a load of antihistimines (6 a day) and occasionally low dose Prednisone.

You might take a look at the "Chronic Urticaria Society " website. It is a wealth of information on this disease. It too has a great forum and members from around the world that have this . I find them much more knowledgeable than any of the doctors I have seen.

 Hang in there!

                         Dick


NDTJ
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/18/2010 11:34 AM (GMT -6)   
Does anyone know how a person gets this? Is this a virus/infection/bacteria?

Red_34
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Date Joined Apr 2004
Total Posts : 23353
   Posted 5/18/2010 12:38 PM (GMT -6)   
Right now they are not sure what causes CU. I think mainly because there can be so many factors to this that it's like trying to find a needle in a haystack. Many doctors just don't know what to do once the typical things are ruled out.

My MIL had CU for about 2 years and eventually they figured hers was due to stress. But she ran the whole gamut too - biopsies, antihistamines, steroids etc. Once she got rid of the stress she got better.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma, Co-moderator for UC and Alzheimer's
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA (hands and spine)-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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NDTJ
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/18/2010 3:22 PM (GMT -6)   
I take 2 medications now which are Clarinex 2x daily and Zantac 2x daily, they want to do a biopsy, have you done a biopsy and will that show where the problem originated from? What are the physicians looking for?

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23353
   Posted 5/18/2010 4:43 PM (GMT -6)   
I believe the docs are looking to see if the rash is fungal or parasitic in nature.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma, Co-moderator for UC and Alzheimer's
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA (hands and spine)-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
To help Healingwell - click here: DONATE
 
 
 
 
 

 
 


NDTJ
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/18/2010 6:09 PM (GMT -6)   
I think it's some sort of bacteria which triggers something in the body to set it off, the physicians that I’m currently seeing kind of agree with this theory. Have you done a biopsy?

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23353
   Posted 5/18/2010 9:18 PM (GMT -6)   
Me personally? No...thank goodness that is ONE thing that I don't have to worry about! I do suffer from random rashes on my body and a chronic rash on my face (due to medications) but not chronic CU.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma, Co-moderator for UC and Alzheimer's
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA (hands and spine)-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
To help Healingwell - click here: DONATE
 
 
 
 
 

 
 


NDTJ
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/19/2010 10:13 AM (GMT -6)   
Does anyone have any pain in the fingers, joints, anyplace else?

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 5/23/2010 10:18 PM (GMT -6)   
Hi!  I started off with bad uticaria (E, N and T) and I get occasional hives on upper part of inner legs.  After searching for a few years, I found these integrative doctors, who found lyme and then other (opportunistic) infections that had taken hold.  After getting tested for heavy metal toxicity and vitamin/mineral imbalances, etc., I am doing a lot better.  I moderated my diet which helped a lot, too.  Haven't had any fake sugar substitues, and lowered my refined sugar.  Before I discovered my integrative doc, my symptoms had escalated to weight bearing hand and foot pain/achiness.  The first alternative medical doc I saw helped me identify the connection between sugar and my pain (this signaling a systemic fungal or parasitic infection).... then she sent me to a lymphatic drainage specialist who taught me some techniques that help.  wuoh, sorry, I'm getting off topic.  Mostly writing to respond to the aspartame comments and the joint question.  It's amazing to me... haven't gone on any other healingwell forums until recently.  I was always on the lyme one.  The amazing thing is the amount of crossover.
I think the most important thing I've learned is to see not just specialists... but docs whom are systemic/integrative/functional/alternative, etc.  Some of the best ones are lyme literate doctors, because they deal with everything and anything.  Though I still have some issues, this saved my life!
Tracy

urticariasucks
New Member


Date Joined May 2010
Total Posts : 2
   Posted 5/28/2010 1:48 PM (GMT -6)   
Hi again

The doctors seem puzzled about how it all starts - but they don't tend to act on it quickly as in most cases, urticaria "burns out" after a few months. I was told that taking a daily antihistamine can actually cure it... but it takes time and you have to continue taking the pills even after the symptoms have stopped. At the moment I've cut down on my antihistamine doses. My hives are not as bad as they were this time last year which does give me some hope. I've not had a biopsy, nor do I have any joint pain. Am hoping it is not going to last forever. Good luck to everyone out there.

tarw54
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/6/2010 10:29 AM (GMT -6)   
I have had chronic urticaria for 5 years , and its driving me mad!..i can't find a link to anything i eat . I dont smoke or drink alcohol, tea or coffee, dont eat spicy foods, or foods with herbs in , all in all, i'm a very bland eater .
Today however, on waking, and getting the usual 'fat lip' feeling, i saw my eye was slightly swollen, but the whole of my body was covered in huge hives , which has not happened to this extent before , and instead of fading slowly through the day, they became more itchy, and red marks appeared in the pinky coloured hives . I felt as if i was on fire, so went to Primecare, but got the same answers.... it could last weeks, months, or years . My hospital records show i'd had a skin test, but on enquiring why it says that, i was told ' theres no point having a skin test' ....i said 'i wasn't asking for one, i was asking why it says i've had one ' just to be 'blah-blahed' and ignored ...I really feel at the end of my tether , and working with someone who thinks its funny to tell my workmates to avoid me as i have scabies , is wearing thin . I have found out the hard way to avoid Ibuprofen, as i had a bad reaction to it, and my throat started to swell, and Anadin Extra, which caused the worst facial swelling i've ever had , but apart from that , i have no idea what triggers it off

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14319
   Posted 6/6/2010 2:12 PM (GMT -6)   
My sister gets hives from recycled plastics. Have you considered that?

Joy
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