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ncdave Apprentice
ncdave
Posted

I have been gluten-free for 15 months, corn free for only 4 1/2 months. The only thing I have tried to reintroduce was by accident. I do not even have the nerve to try hard cheese to see if I am introlent of latose or casin. For the last year I have been living off water and 3-4 food items. Since going corn free for 3 months I am starting to be able to eat some other foods now. Squash, broccoli, greens, I have even gone back to potatoes fried in olive oil, I could not even eat sweet potatoes. In the last 2 weeks I have gained 4 lbs !!! That's great news for me since I had lost 40lbs. It feels great to be able to eat some veggies now, an the weight gain is a good sign I'm getting better. Hope your feeling better now an have a wonderful valentines day.

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designerstubble Enthusiast
designerstubble
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I suspect I have been celiac for many years but was in denial about it. (I am self-diagnosed, but my Mom was biopsy-diagnosed so the likelyhood that my problems were from celiac made sense. When I fianlly went gluten-free about 20 months ago and saw my symptoms clear up, I knew.) It was only a few weeks in that I made some gluten-free cornbread, and after having felt better than I ever had in my life, I got sick again. Even those corn based plastic bottles got me after that. It was a year after being away from corn that I found out I could now tolerate cornstarch.

What happened was this: I had an abcessed tooth. I needed an antibiotic but the compounding pharmacy where I have had to have all my medications made (because almost every pill on earth contains corn) was out of the ingredients. They wouldn't have them for a few days but I needed the antibiotic right away. My doctor said it would be better to get sick than to die, so he wrote me a 'scrip for the regular ones. Even the pharmacist said, "You can't have these, they're full of cornstarch!" But then he noticed my swollen face and said, "Oh yeah, I guess you'd better take them."

I never got sick. After that I went out and bought some Udi's bread. No problem. Then I tried Canyon Bakehouse bread, but that didn't work so well because it has corn MEAL as well as corn starch. So I know I can have the starch, but that is the only corn product I can tolerate - so far. I'm going to wait another six months or so and try again.

My most noticible symptom from corn is psoriasis, but I have digestive symptoms too. Not as bad as what gluten gives me, but noticible. I get foggy-headed and insomnia too. Gluten gives me all of those things PLUS nausea. (It never did until I had been gluten-free for a while.)

Everyone is different, but if I were you I would stay away from corn altogether for a while. When I first started my system was so messed up I could barely eat anything. Even sweet potatoes and broccoli from the grocery store made me sick. I had to go completely organic for a few months until things settled down. Stick to bland foods that you know are safe and let your system settle down too. Then in a few months you can try adding things back.

Oh my god you must have been petrified of taking those antibiotics?? How awful. What a story, thank you for sharing it. How relieved you must have been when you didn't react?? It must have been like Christmas!!!

When you ate the corn bread did you experiment afterwards with different kinds of corn or just cut it out completely? What's the difference between meal and starch?? I'm so useless I want to look everything up but I'm so SO tired of this all... What with my allergies too that have come on suddenly :( exhausted. Today I have realised that pumpkin seeds might be causing my intermitant terrible ezcema... Big flare up... Must be the seeds... Another thing gone.

I reckon you're right... Gonna ditch the idea of sneaking some corn in... Do you think I should ban it from the house??? Apart from the cake making with flour I haven't seemed bothered by using rice cakes for my son (or any other product with corn anything)...

Big thank you for your help, you guys are awesome :)

designerstubble Enthusiast
designerstubble
Posted
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I have been gluten-free for 15 months, corn free for only 4 1/2 months. The only thing I have tried to reintroduce was by accident. I do not even have the nerve to try hard cheese to see if I am introlent of latose or casin. For the last year I have been living off water and 3-4 food items. Since going corn free for 3 months I am starting to be able to eat some other foods now. Squash, broccoli, greens, I have even gone back to potatoes fried in olive oil, I could not even eat sweet potatoes. In the last 2 weeks I have gained 4 lbs !!! That's great news for me since I had lost 40lbs. It feels great to be able to eat some veggies now, an the weight gain is a good sign I'm getting better. Hope your feeling better now an have a wonderful valentines day.

Dave, how on earth have you survived??? Seriously? I am eating fruit and veg (everything apart from any citrus, tomatoes) I am sooo struggling. I can't find enough protein :( I'm desperate for cheese again, but like you do not have the nerve. I've also just lost my pumpkin seeds (the only seeds, can't have nuts)... As I have flared up with ezcema again... Around my eyes (nice)...so they have to go. :( How do you get your protein? I'm juicing spinach everyday in the hope of obtaining a few grams but its not enough...

I feel for you losing 40lbs, honestly crazy sh*t. And very happy for you that you put 4 on! Awesome! Mmmmm fried potatoes! I bet they were delicious?!! (It's the simple things)... Imagine fried potatoes and melted cheese.... Oooooh yes! (Sorry... I can't have it either, but can hope!)

In your opinion then do you think you'll ever get to a point where you might be ok with corn?

I'm hoping that all my allergies (some food strangely give me asthma?? Some foods gives me hives, some gives me ezcema)... Don't understand why though?

Do you know anything about leaky gut???

Dave... Thank you. Well done too, I know how difficult it is. I hope you have a good support network around you. And Happy Valentines :D

bartfull Rising Star
bartfull
Posted

I know this is a touchy subject, but you may have to start eating meat, at least for a little while. If you can't stand the thought, how about fish? You have to get some protein or you will never heal. I know a lot of vegetarians and some do it for health reasons, some for ethical reasons, and some because they just plain don't like meat. But whatever your reason is, won't you please consider it for a little while?

As for corn meal vs. corn starch, I believe the meal is just whole corn ground into a flour type substance. The starch is simply that - starch extracted from corn, leaving the hulls and the corn protein behind.

designerstubble Enthusiast
designerstubble
Posted
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I know this is a touchy subject, but you may have to start eating meat, at least for a little while. If you can't stand the thought, how about fish? You have to get some protein or you will never heal. I know a lot of vegetarians and some do it for health reasons, some for ethical reasons, and some because they just plain don't like meat. But whatever your reason is, won't you please consider it for a little while?

As for corn meal vs. corn starch, I believe the meal is just whole corn ground into a flour type substance. The starch is simply that - starch extracted from corn, leaving the hulls and the corn protein behind.

Thanks bartful

You've been a help truly. I think you may be right about introducing some flesh (ugh)... Fish I think... Tho it worries me as I am reacting with hives and asthma to everything. I worry that introducing it now might initiate a reaction.

I cooked my husband and son some chicken the other night carefully ( super careful, wore gloves, stood back, virtually didn't breathe!)... I used mixed flour... Fine that night... Next morning lovely 'd' and awful stomach. I actually wondered why my guts were 'playing up'... And then remembered the chicken. I thought I'd gotten away with it. Hmmmmm.

That's it then. No corn for me. (Expletive!)

Thanks for everything.

Kimmy

designerstubble Enthusiast
designerstubble
Posted
  • Author

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 Rising Star
bartfull
Posted

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)))

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designerstubble Enthusiast
designerstubble
Posted
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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 Rising Star
bartfull
Posted

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.

cahill Collaborator
cahill
Posted

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

designerstubble Enthusiast
designerstubble
Posted
  • Author

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

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