35 replies to this topic

[designerstubble]

Thanks Dave for your help.
I'm off the dreaded corn now, for sure. More reactions to flour again (I just couldn't quite believe that I was reacting to it?)... I wish you sincerely the best recovery, and hope that you are scoffing lots of fried potatoes (I had some myself last night after I read your post I kept dreaming of them)...
Thanks for all your help
Kimmy

[bartfull]

Make sure it isn't any kind of shellfish. Those have more allergic potential than regular fish. You might try lamb or turkey. Most of the folks here who had such severe trouble seemed to tolerate them. Lamb especially. I myself don't care for it, but if I needed the protein I could choke it down. How do you do with spices? If there are some you know you can tolerate, maybe you could spice upthe lamb and make it taste better.

I worry about the hives and asthma though. Do you have an epi-pen? What does your doctor say? Don't take too many chances. As you know, allergies can kill you. My Dad got to the point that even the epi-pens didn't work anymore. I lost him to asthma. Please, talk to your doctor, and if you don't get satisfactory answers, find a different one. Keep us updated, please. I will be worrying about you. (((HUGS)))

[designerstubble]

Make sure it isn't any kind of shellfish. Those have more allergic potential than regular fish. You might try lamb or turkey. Most of the folks here who had such severe trouble seemed to tolerate them. Lamb especially. I myself don't care for it, but if I needed the protein I could choke it down. How do you do with spices? If there are some you know you can tolerate, maybe you could spice upthe lamb and make it taste better.

I worry about the hives and asthma though. Do you have an epi-pen? What does your doctor say? Don't take too many chances. As you know, allergies can kill you. My Dad got to the point that even the epi-pens didn't work anymore. I lost him to asthma. Please, talk to your doctor, and if you don't get satisfactory answers, find a different one. Keep us updated, please. I will be worrying about you. (((HUGS)))

Oh bartful, poor you... Was your dad celiac too? Did he have anaphylaxis? Why did his epipens not work?? thats terrible. My doc won't give me an epipen as I have not had an anaphylactic reaction... I only get asthma reactions to food and hives (and eczema)... My son has a junior epipen.
What happened to your poor dad? (Don't worry if you're not up for talking about it, I know it may be too personal to share).
I have cut spices out as I seem to be getting asthmatic or hives. Fresh ginger made the roof of my mouth swell the other day for the first time too. paprika gives me hives and so on...
Thanks for worrying about me, hugs back to you too. Why am I reacting to all these things all of a sudden? I just don't understand. Ps. I just changed my doc.. I live in UK. This one is even more useless than the last one. Can't afford to go private so guess I'm on my own.
Just wish I knew if this was all gonna get better, I could stand it if I thought that one day it would just be gluten I had to watch for... These other intolerances and allergies though... Ugh.
Thanks again for your help and understanding

[bartfull]

Hives ARE a sign of anaphalaxis. You may only be getting hives now but at any time, the next reaction could close your throat. The swelling in your mouth is too close to being a full blown reaction. And being an asthma patient, you should DEFINITELY carry an epi-pen at all times! INSIST on it!!!!! PLEASE!

I get the celiac from Mom's side of the family. With my sweet Dad it was just severe asthma. He had had it for over 30 years and it continued to get worse. Toward the end he was getting attacks from anything and everything. The last year of his life he spent more time hospitalized than not. Then some genius doctor gave him a medication that no asthma patient should ever take. It almost killed him then. He had to be intubated for a couple of weeks and although he was eventually allowed to come home, he never regained his strength. The epi-pens no longer worked at all. The night he died he was having a bad attack and after trying the epi-pen and going on his nebulozer he told Mom to call the ambulance. The phone was just a few steps away but in the other room. When Mom came back, Dad was on the floor.

The ambulance came. By now I was already at the hospital waiting for them to arrive. What was normally a ten or fifteen minute ride by ambulance turned into 45 minutes. I knew then that they must be doing CPR because they can't do that in transit. They have to pull over to the side of the road. When they finally arrived they brought me and the rest of the family into a different waiting room - the one they use for people who are about to lose their loved one. They do that so the weeping and wailing won't freak out the others in the waiting room.

Finally the doctor came and told us. During that few seconds when Mom was out of the room to make the call, Dad had gasped so hard that the mouthpiece of his nebulizer detatched and lodged in his throat. The ambulance guys had no idea, so of course the CPR did no good. He wasn't getting any air.

A few months later I had to take an ambulance trip myself. When they found out my name they knew I was his daughter. I had the chance to tell them that no one held it against them. I'm so glad I did get that chance. You see, my Dad was an EMT instructor and they all knew and loved him. They all felt horrendous guilt about that mouthpiece. But that is NOT something that would normally happen and they had no way of knowing. No one blamed them in the least. I had a chance to tell them that I admired what they do, and that my Dad was proud of them.

And yes, I am crying as I type this. It all happened in 1995, but it's something I will never get over. My Dad was my hero and my best friend. I worshipped the ground he walked on, and to this day I have never met another human being who I could love and admire so much.

I will say it again. You need an epi-pen. Tell your doctor about the swelling in your mouth. Point out to him that hives are the beginning signs of anaphalaxis and that you have it in writing that he has refused you an epi-pen so that your family can sue the pants off him should you die from this. Do whatever it takes to get one!!

And let me know what happens.

[a1956chill]

bartfull, (((((HUGS)))))

[designerstubble]

Bartful, I have also cried. So so sad. I'm so so sorry. I didn't mean to drag they all up. Your poor father. Thank you for sharing that, that must have been difficult.
Asthma is such a debilitating condition, did he use his epipen for asthma attacks? Or for allergic reactions that triggered anaphylaxis? Terrible.
I will try to get that epipen. I asked my doc about the hives and he really didn't seem concerned. I didn't know that hives were the beginning of anaphylaxis? I thought that anaphylaxis was reaction that involved the deeper tissues and organs (didn't think it was usual to go from hives to anaphylaxis)... I had some hives on my wrist today and I don't even know what they are from... No idea. Ugh. It's exhausting worrying about it all bartful. But I will heed your advice as I know it's best to be safe. I might have a fight on my hands though. This is what angers me the most, that the doctors don't seem to know anything. I had a 3 month review at this new doctors too... I went for my blood results for my vit stats. Doc says my blood work came out fine. I was elated! On further enquiry it was just my FBC that he was talking about and then could find any other results ie. vit d, ferritin calcium etc... (The ones that were critically low 3 months previous)... He apologised and told me that they weren't done by the lab! Awesome. Good start eh?!
Anyway. Be strong bartful, I lost my grandmother (she was like my second mother), she was a strong and brave woman who went though unspeakable things in the Spanish Civil War, with 3 small children and ... Nothing. She is my inspiration, she died 3 years ago and I still blow her kisses. The people we admire and love will only ever serve to make us better and stronger.
Thank you for sharing such a difficult story, and thank you for all your input into my situation. It's lovely to know that there are such genuine decent people on this planet.
Big hugs
Kimmy