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Going Downhill Fast


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#1 bartfull

 
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Posted 19 March 2012 - 01:40 PM

So I'll try not to make this TOO whiney:

I've been doing the elimination diet without much success. The only things I've been able to add back are avocados and ORGANIC sweet potatoes. After the organic ones worked, and seeing I can't GET organic veggies here, I thought I'd try grocery store sweet potatoes. BAD decision!

Now it seems I am reacting to one of my previously safe foods. I have no idea if it's the rice, the broccoli, cauliflower, or the meat.

But in the meantime, I'm not getting much nutrition and it feels like the light inside is growing dim. I feel so weak and tired and shakey. I honestly feel like I'm dying a little bit more every day.

I alternate between explosive rages and uncontrollable sobbing. ALL the time. Yesterday was really bad. I drove 60 miles to the "city" for organics and they didn't have much to choose from. All I could get were some apples and pears. I don't even know if I can EAT apples or pears yet.


I'm darned near ready to give it all up. Before, I had psoriasis and insomnia and some digestive issues, but they were mild. Now, well, like I said, I feel like I'm dying. I have never felt so bad in my life - not even when I had double pneumonia.

I know vitamin deficiencies can cause all this. I know they ARE causing all this, but I can't find vitamins without gluten/soy/corn. I DID find one liquid vitamin B12 that had none of these, but it came in a plastic bottle that was made with corn!

So today I took one of the sublingual B12's that I had leftover from before the corn intolerance hit. I'm going to continue taking them no matter how bad the other symptoms get because nothing could feel as bad as the way I'm feeling now. I honestly think if I don't I will die, either from the deficiency itself, or from an accident (my mind is way worse than the brain fog I had from food). I don't want to feel like this anymore. The CAT is afraid of me! I told her this morning that I'd be home tonight, even if she'd rather I never came home again, and then I said, "Hey, maybe we'll both be lucky and I'll die of a heart attack before I can come home."

Am I crazy for ingesting corn when I know what it does to me? With no insurance I can't afford injections. I'm not asking you all to talk me out of it, I'm asking you to tell me it's OK.

Isit?
  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


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#2 Jestgar

 
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Posted 19 March 2012 - 02:14 PM

Help us get you through this. Tell us what you CAN eat, and what you absolutely can't.
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#3 bartfull

 
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Posted 19 March 2012 - 02:44 PM

I don't know, Jegstar. I WAS eating well washed meat (organic when I could find it), white rice, broccoli and cauliflower (organic when I can find it), eggs, white cheddar, bananas, and avocados. But SOMETHING in that mix has started bothering me.

I can't eat potatoes, skins or not, organic or not. Can't tolerate brown rice. Asparagus didn't work. Almonds are out. I reacted to non-organic pears but I bought some of the organic ones yesterday (haven't tried them yet). Leafy greens go RIGHT through me. I WAS eating Hagen Daz vanilla or chocolate ice creams but they both bother me now. It seems that any kind of sugar is my enemy. Once or twice when I was craving something sweet I just had a spoonful of table sugar. I reacted to that too. I can't think of any others right now that I have even tried. When I react to something I have to wait until the psoriasis clears up before I try something new and sometimes that takes a week or two.

Oh yeah, I tried making biscuits out of Bob's Red Mill, the one with no gluten soy or corn, but that didn't work either.


I have reacted to every medication so I had Tylenol made. Come to think of it, my jaw has been really painful lately and I have been taking LOTS of that Tylenol. Maybe THAT is what I'm reacting to instead of one of my safe foods. It's SUPPOSED to be OK, but who knows?

I just need some vitamins!! The night before last I slept a full eight hours. Woke up feeling like I'd been hit by a truck and really fuzzy headed. After the wasted trip to the big grocery store, I came home and yelled and screamed and cried for a while, then I took a nap for two hours. By eight o'clock I couldn't keep my eyes open so I went to bed. Slept for seven hours, drank some coffee (oh yeah, coffee is on my safe list too) and when it was gone I went in and slept for another two hours.
  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 GFreeMO

 
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Posted 19 March 2012 - 02:46 PM

Hi,
I know that we have talked before about our corn issues. I am currently corned right now so I feel your pain. Check your rice. I am not sure if it's riceland or mahatma or one of the others but look on their websites. One of them has corn listed as all allergen for all of their rice.
This corn stuff is just as bad as gluten if not worse for me. I hope you feel better soon.

I am not sure if they do anything to bananas as far as corn goes but bananas kill me.

Tylenol is full of corn starch it makes me feel glutened every single time. Knee pain, D..the works.
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#5 bartfull

 
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Posted 19 March 2012 - 03:13 PM

The Tylenol was made at a compounding pharmacy, supposedly with no gluten/soy/corn.
The rice is Uncle Ben's. I wrote to them and they actually called me on the phone and assured me they use no corn at all.
  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#6 ravenwoodglass

 
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Posted 19 March 2012 - 03:29 PM

I know you don't have insurance but you do need to see a doctor if you can. Not everything is always intolerances and you may have something non-food related going on. Call your local hospital and ask for phone numbers of local clinics that will have a sliding fee scale. You also may qualify for medicaid or your local Social Services office may be able to refer you to a clinic.
You have been suffering for a long time now and your list of foods that you tolerate should be getting larger not smaller. Don't mean to nag about the doctor issue, if I have mentioned it before, but I am worried about you. I hope you are feeling better soon.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 kareng

 
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Posted 19 March 2012 - 04:39 PM

I have to agree with Ravenwood. There may be something else going on.

When you say you have a reaction to different foods, what do you mean?

Your current eating is not "normal" and may be part of the problem. What I mean by normal is a balanced mix of proteins, fibers, fats, etc. When we get our digestive system out of sync, eating anything could be causing gas, etc. Too much fat or too much fiber or not enough fiber, etc.

I'm struggling wiht this post because I'm afraid you will take it the wrong way. I'm just trying to offer something to think about or explore. Even a healthy GI system that is only fed 5 or 6 different things might not feel too good. I know this won't be a popular post, but not everything is gluten or a food intolerance.

I know that "fading away" feeling. I think it can be due to low calories and dehydration. I hope you figure something out soon.
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#8 bartfull

 
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Posted 19 March 2012 - 05:05 PM

No offense taken! Are you kidding? You are the ones who have helped me so much and I love you for it!

My reactions vary. I get psoriasis flare ups from anything that doesn't agree with me, and some of them are also accompanied by digestive problems that are far worse than any I had when I started. I seem to get insomnia from corn/gluten/soy, but not from the other things. And the foggy foggy brain with everything.

But the worst symptom is the jaw pain. I don't THINK it is food related, but whenever I eat something that doesn't agree with me, within a few days it flares up. It does that after I've had a cold too, or any kind of emotional upset. That's why I know it's not from the food. Right now it is hurting so bad I can't open my mouth. It took me over an hour today to eat a very small bowl of rice with shredded pork and broccoli. And the pain has me jumping/flinching every few seconds. When I go home I'm going to eat a banana and an avocado - at least those are so mushy I can just suck them in through my clenched teeth.


Tomorrow I'll just run everything through the blender so I can drink it.


There is a clinic in Rapid City that will see people on a sliding fee scale. They may be able to help with diagnosis of the jaw thing, but I doubt they will be able to help me treat it. We've already ruled out teeth, TMJ, and blicked saliva duct. There is a growth of some kind on the jawbone. Cyst? Tumor? Either way, it's going to cost more than I can afford. I know, I know, I can't afford NOT to treat it, but they won't accept used guitar strings as payment. :lol: (And that is the first time I have smiled all day)

Thanks. :)
  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#9 cait

 
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Posted 19 March 2012 - 05:14 PM

In terms of vitamins, vitacost allows you to filter by multiple allergens, which is at least a starting point. Obviously you might still react to them, but I was able to find a few things that said no corn/soy/dairy/gluten that way.

Sorry you're feeling so miserable. I hope you can figure something out. I wish I had more wisdom to offer.
  • 0
Dad has Celiac
Neg Celiac tests, positive gene test
Life vastly improved off gluten
Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free

#10 llama3

 
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Posted 19 March 2012 - 06:15 PM

Are you taking probiotics? I mean a high dose probiotic with at least 10 different strains. It's hard to find them without corn/soy/etc but there are a few out there. They are expensive, but worth it if they help. I'm just wondering, if you're reacting to so many things, if it could be an imbalance of bacteria in the gut that is getting worse with the restricted diet. I don't know, but I believe this is the case for me and I have recently been seeing improvement with probiotics as far as what foods I can tolerate.

Also, Country Life vitamins says they are free of yeast, corn, wheat, soy, gluten, milk, salt sugar, preservatives and artificial color. Have you tried their brand? My health food store carries them but you can also get them from Amazon.

Whatever is going on, you can persevere! I hope you figure it out soon.
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#11 Jestgar

 
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Posted 19 March 2012 - 06:32 PM

yogurt? beets? rutabaga? cabbage? jicama? lamb? buffalo?

Try eating things you've never eaten before.
  • 0
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#12 abaker521

 
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Posted 19 March 2012 - 06:46 PM

Funny.. I've recently been having jaw pain too. It comes and goes but it's definitely annoying. Honestly though, I think a part of it has to do with anxiety. I tend to clench my teeth when I'm anxious and I don't notice it. Keep me posted though if you find an answer.. perhaps it has to do with a vitamin deficiency too?
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#13 dilettantesteph

 
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Posted 20 March 2012 - 03:47 AM

Uncle Ben's rice might not be the best choice. They have a number of products with a number of ingredients and some cc from one of them might be an issue. Why not go with Lundbergs which seems to be the best rice for sensitive celiacs?

I have problems with most processed foods, and I can eat Birkett Mills whole groat buckwheat. That might be something to try. I sort it and wash it first. Now I'm remembering you mentioning corn. I have found corn particles in it. If your sensitivity to corn is serious I guess that's out. For produce, I have sometimes found the conventional bothers me less than the organic. This time of year is very hard. I froze a bunch of stuff last season since I had problems last year at this time, but I didn't freeze enough and ran out so I'm in almost the same boat. Fortunately I've got my garden and somethings are sprouting

I have been where you are with the elimination diets. It can be very difficult. It is especially hard when you feel like you have nothing that you can eat and you are hungry. It is easy when you are healthy to try something to see if it bothers you. It is a lot harder to figure things out when you are experiencing symptoms.

One thing that I do sometimes to test things is eat more of them and see if things get worse or not. That way I at least get to fill my stomach up once in awhile. It is a lot easier to give something up when you are sure that it is bothering you.

I don't know if you are already doing this, but watch the source of the food and not just the food itself. It may be something happening during processing which is bothering you and different sources may process things differently.

Best wishes.
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#14 ravenwoodglass

 
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Posted 20 March 2012 - 03:48 AM




There is a growth of some kind on the jawbone. Cyst? Tumor? Either way, it's going to cost more than I can afford. I know, I know, I can't afford NOT to treat it, but they won't accept used guitar strings as payment. :lol: (And that is the first time I have smiled all day)

Thanks. :)


You can not afford not to find out what this is. If it is a cyst it needs to be drained and that should not be extremely expensive. If it is (heaven forbid) a tumor many times if you have a rather low income the clinic or hospital can help you get Medicaid. If you have a disease or cancer or other serious illness and your income is low then income levels for Medicaid are higher than if you are a healthy individual. With your having a growth and your weight loss and other issues you cannot just let this slide and hope it goes away on it's own.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 dilettantesteph

 
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Posted 20 March 2012 - 03:50 AM

The only sugar that I have found that I can tolerate is Volcano Island honey. It is expensive, but I can tolerate it. It might be worth a try if someone around there carries it. All the other sugar sources have bothered me except for sugar naturally occurring in foods. I even grew sugar beets and sugar cane to try to make my own, but that is seeming not worth the bother. Too hard.
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