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Going Downhill Fast
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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?

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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.

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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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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.

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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.

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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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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. :)

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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.

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

Try eating things you've never eaten before.

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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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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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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.

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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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You need to go to a dr ASAP. Your health isn't something you can just say you "can't afford" to take care of. Plus, if your elimination diet is not monitored by a dr, nutritionist or anyone beyond yourself it can actually cause more harm than good. By eliminating soo many things you are setting your self up for even MORE vitamin deficiencies and other problems because you aren't eating enough variety of foods to get all the essential vitamins and minerals AND you aren't supplementing and really can't because you don't know what your body is lacking.

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Your description of how you're feeling is how I was about 4 weeks ago. It felt like I was just spiraling downward. I was tested for parasites..and had one that is normally not bad in healthy people, but with a damaged intestine it IS bad. It allows things you're eating to leak out into your blood stream..and you get a reaction.

I took the med for it, started taking good quality coconut oil which feeds the body and the brain(and oils are important for some vitamin absorption), and went on a mild steroid (entocort) which is used for Crohn's. That combo has made me into a different person.

With your jaw issue too..I think you really NEED to see a Dr.!

Look for a clinic that charges on a sliding scale, or check with United Way for medical info? Here in our area of the US we can call 211 for that type of info. Do you have that where you are?

I know you feel like you're hanging by a thread. Tie a knot and keep holding...

(hugs)

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omg, I hope you start to feel better!

If you can load up on the meat, do it. Even better, go buy some organic liver. Beef I think is most nutritious, but chicken or lamb is supposed to be the tastiest. Pork liver is supposed to be the worse. I like liver best in pate form...which is probably what you'll need to eat it in due to your mouth. A tasty pate just needs lightly-cooked liver and butter/margarine/some sort of fat. Avocado and liver pate might be tasty. Meat in general has lots of vitamins, and liver just has more. I know its pretty gross tasting, but it's like a super-food for some nutrients.

Second, your jaw is sounding really scary. If it were me, I would probably be thinking that the jaw would be causing a lot of my problems. It sounds to me like your entire immune system is in overdrive or something, and if you've had an infection in your jaw for a long period of time, I could see it causing these awful symptoms.

You really do need to see a doctor, and insist that they figure out what's wrong with you, and get them to start with the jaw. You can't afford NOT to see a doctor when your health is this bad. Sure they've said its not a bunch of things, but that just means the list of things it can be is smaller, right? And if your entire immune system's haywire due to an infection, and parasitic or bacterial infections are generally highly treatable, it might mean your dietary restrictions will get better afterwards.

Keep us updated if you can, best of luck.

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Hi gang. I'm still alive. :) The B12 helped. The other day I was trying to tune a bass and I FORGOT HOW! I've been a musician all my life and I own a music store, but I FORGOT how to tune a bass!! I cried all day again.

But after three days of sublingual B12 my head is a lttle clearer and I don't have the shakes anymore. Well, not as bad anyway.

The jaw is worse than ever, but my friend Maria brought me some vitamins that look safe so I'm going to switch over to them. Maybe in a few days I'll be able to open my mouth again. Today I ate an omelet that I ran through the blender. It had shredded pork, cauliflower and cheese in it. Pretty tasty, even if it DID take an hour to eat.

I'll try to get to the doctor on Friday, but I just can't afford an MRI right now. My furnace broke down and even though it's getting warmer, nights go down into the 20's here yet. I plugged in one of those oil filled electric radiators and that gets it up to about 55, but let me tell you, getting out of the shower when it's 55 degrees in your house, you sure do learn to dry off and get dressed quickly! :lol:

I'm going to have to wait to get it fixed until tourist season when the money starts coming in again. AND, I will get that MRI. But in the meantime, I think the crisis has passed. I don't feel like I'm dying anymore.

Thanks for all the help and suggestions. I love and pray for you all.

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You may just need a simple x-ray for the jaw problem. It's good your getting into the doctor about it. You may be able to give payments on the testing that needs to be done. Ask at the hospital if that is possible. Glad the B12 is helping but you really need to find out why you can't open your jaw.

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Already had x-rays. That was one of the ways they determined it wasn't a tooth. The thing that surprised me though was that my "new" doctor was able to test all of my saliva ducts simply by pressing the right places with a tongue depressor. Holy cow did they ever squirt! Why was he the only one out of all the doctors and dentists I've seen who knew how to do that? Or more likely, as an uninsured patient, the other doctors just wanted to get me out of there seeing they couldn't make a bundle off me. (Not fond of doctors. Can you tell? :lol: )

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Already had x-rays. That was one of the ways they determined it wasn't a tooth. The thing that surprised me though was that my "new" doctor was able to test all of my saliva ducts simply by pressing the right places with a tongue depressor. Holy cow did they ever squirt! Why was he the only one out of all the doctors and dentists I've seen who knew how to do that? Or more likely, as an uninsured patient, the other doctors just wanted to get me out of there seeing they couldn't make a bundle off me. (Not fond of doctors. Can you tell? :lol: )

Were the xrays of your teeth or of your whole head. Not everything can be seen with the bite wing xrays that dentists use.

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Bartfull, I'm so sorry you're feeling so ill. Last time I was on here you were on an upswing.

I don't remember, did you experiment with a low salicylate diet?? I bring it up because they are cumulative and that might explain why foods are falling off rather than coming on - especially if they are high sal. http://salicylatesensitivity.com/

I also agree you need to look into other causes like parasites, etc. You should have seen improvement by now.

I'm glad the vitamins are helping and hope you continue to improve.

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Your list of foods looked almost EXACTLY like the diet my daughter was on for the better part of a year... with one glaring exception... CHEESE. She could eat no dairy (and still can't), but her entire diet was eggs, white rice, cauliflower, plain chicken, and some apples. She very slowly began to introduce some new foods but is still very limited.

So, for now I'd certainly ditch the cheese from your already limited diet.

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Holy cow! I'm crying again. But this time it's because I found out my friends are organizing a fundraiser so I can get that MRI. I feel TERRIBLE about taking charity - I've always been one to give charity, not recieve it. But I feel wonderful knowing that my friends care about me so much. And it WILL be good to finally find out what this is - even if it turns out to be cancer. At least I'll know.

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    • I had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.   
    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
    • Thank you so much for responding, it's so hard to go on this journey of questions and Drs. I really appreciate the time you took to respond. God bless you 💖
    • Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did?  Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas? Were you eating gluten right up until the biopsy?
    • I got them on the back side of my knees too. All the literature points out knees & elbows but doesn't mention the "behind the knee" portion of your leg. I eventually got them ON the knees itself but that was one of the last places to present. I also got them on the inside bend of my arm instead of the elbow and just like the knees, it eventually presented on my elbows. Not to be forgotten; the literature also states it can present anywhere on the body. If you found those links I've posted about how a dh biopsy is done correctly then print them out & take them with you to SHOW them. Any derm should be able to follow the directions or they should turn in their license.  As to them saying herpes, well duhhhhhhhhhhhhhhhhhhhh, dh does have a herpes like presentation. That's why they call it dermatitis herpetiformis! Remember, they work for YOU, not the other way around. Insist. Make sure you're still eating gluten. Let us know how it goes. The best of luck to you!
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