So Discouraged

[bartfull]

I just can't seem to figure out a diet that workds for me. It seems like every time I try to add any food back to my diet I react. And I keep getting corned or soyed or something.

I've been struggling with vitamin deficiencies and thought I'd found something I could take. It had "vitamin E from soy", but was the closest I could find to gluten/corn free. I hadn't tried soy yet, so I thought, "maybe I can take these", but after a few days the psoriasis started coming back. Even though they cost a lot, I had to give them to a friend.

I got brave on Sunday and made biscuits using Bob's Red Mill gluten free multi-purpose flour. I used butter instead of shortening because butter has never bothered me. But the recipe called for milk.

I don't like milk - never have, so when I first went on the diet I knew I'd have to have milk in the house if I wanted to bake. I thought I was pretty smart when I decided on powdered milk. I figured it would work for baking, and it wouldn't go bad sitting in the cupboard.

Well, I THOUGHT I had purged my house of anything corn, but when the psoriasis started popping out again I looked. Sure enough, this stuff has vitamin D added, and vitamin D is almost always carried on corn.

No big deal, right? I can make them again but just use water. Except I am so discouraged I could cry. The biscuits weren't even very good - too "bean-y", but it was the first bread-like substance I had had in seven or so months. And I'm not sure if the milk was the only culprit. Could be the bean flour. I haven't even tried adding legumes yet.

I tried green grapes one day. Psoriasis. Added carrots, but seemed to react to them too. Leafy greens and yams cause emergency level digestive problems. The brown rice I had been eating bothers me now too, digestively, so I went back to white rice. Can't eat potatoes, but I'm not sure if it's because they are nightshades or if it is because most potatoes in the grocery store are gassed with ethylene (corn) to keep them from sprouting.

So I'm living on well washed chicken, occasional pork and once in a while a well washed steak, white rice, white cheddar, cauliflower, a little broccoli, eggs (fried in butter - for some reason boiled eggs make me nauseous now), and Hagen Daz or Starbucks ice cream (both made with sugar instead of corn syrup). And to tell the truth, I think the ice cream bothers me too. It's the only treat i have left, and I may have to give that up too.

I finally get in to see the nutritionist this coming Sunday. (Yes, Sunday! She is going to see me on her day off because it's the only time I can go. THAT shows some pretty strong caring on her part.) But what can she do for me that I haven't done already? I have stuck to eating things I know don't bother me and added foods back slowly, one at a time. Haven't found one single thing I don't react to. And now even my "safe" foods are giving me trouble.

I think I'm going to have to break down and have vitamins compounded. Then it won't matter if I never get to eat anything good again. At least these white spots on my nails will go away. At least I'l get some energy back. At least my hair will stop falling out. Maybe I'll even be able to sleep again.

Maybe I'll be able to walk and play guitar without pain - right now my psoriasis is on FIRE.

OK, I know I'm whining agian. Sorry. I guess I just need some more words of encouragement. And you guys are the best when it comes to encouragement. I truly thank God for all of you.

[Jenny (AZ via TX)]

I wish I had some advice for you, but all I can offer is support and hope that your nutritionist will be able to help you! I will send some positive thoughts your way.

[MitziG]

I am so sorry. I too do not have much to offer besides sympathy I am afraid. My husband suffers from psoriasis on his palms and I well know the agony of the disease. He finally got relief after going to Mayo Clinic for their coal tar treatment, though they ended up doing a different treatment on him. It is relatively silent now anyway. Obviously food is a huge trigger for you, but stressing over it is likely causing flares as well. Easy to say to relax, hard to do though. Perhaps some therapy might be helpful for dealing with how your life is being affected by this while you continue seeking a nutritional solution.

[bartfull]

Right after starting this thread a friend came in to my shop with is sub sandwich. He picked up my bowl of rice and chicken with his gulteny hand and I told him he had just contaminated my food. When he said he thinks I "go a little overboard with this food stuff", I lost it. I didn't even know I KNEW such foul words as came out of my mouth! After I screamed at him I started sobbing. He left. I'll probably never see him again. At this point, I don't even care.

Yeah, I AM stressed out. Too many hours at work, plus taking care of my cancer stricken friend has me stretched pretty thin. And because I'm not getting the nutrition I need I don't have the energy for it, but I have to do it anyway. My jaw hurts, my hands hurt, my feet REALLY hurt, my body aches, and I am so so so fatigued.

I'll get over it, but right now I wish I could crawl into bed and never wake up. Don't get me wrong - it's not that I don't think life is worth living - it's that I think THAT'S how much sleep it would take to make me feel better. I long for my bed the way one longs for their lover. I crave sleep the way one craves food. And speaking of food, I can eat until my stomach hurts from being too full, yet I'm still hungry, craving something that will give me the vitamins I need.

Enough. I'm not usually such a whiner, but lately it's just been so hard not to. Sorry.

[Jestgar]

Whine on. It does seem to help.

and {{{{{HUGS}}}}}

[UKGail]

Hi Bartful, I am so sorry you are feeling so rough at the moment. I could be about to write a complete load of tosh, as I am no scientist, am still fairly new to this life, and don't suffer from psoriasis, but I did just want to offer the few thoughts that I can muster from your posts, as well as my moral support.

Firstly - you didn't mention whether you feel you are healed inside from the gluten damage or not. I am working on the assumption that gluten has been an aggravating factor in your psoriasis problem, and that if you have not healed up, then you might still be more sensitive now, than you might be in future, once your gut has healed properly.

I gather you are struggling with your vitamin levels, which might mean you need to gain some weight too. Looking at what you say you can eat (white rice, chicken, pork, steak, cauliflower, broccoli and eggs), although limited, this is, I think, a complete diet. The egg boxes from my supermarket say that each egg contains 25% of the RDA of Vitamin D. I would suggest eating lots of eggs if you tolerate them well. I do. I eat 3 eggs for lunch or dinner on many days, scrambled in a non-stick pan with no added fat. I suggest eating it with some veggies or with any further meat or fish protein that you can tolerate. Failing that, mixed up with some white rice, but this would not be as nutritious for you.

What worries me is the dairy thing. I would be strongly tempted to take this out for a few days to see if that helps, as it is such a common allergen, and known problem for unhealed celiacs.

There is no fish in your diet? Oily fish is great for calcium and vitamin D, and for good fats too, which are also high in energy. If you can't buy fresh, try tinned salmon, tuna, sardines etc. Baked or fried white fish should be good too from time to time.

You don't mention nuts or coconut? Perhaps you don't tolerate them well? If there is any of them you can tolerate, they would be great to add in to your diet, especially coconut, which is also a decent dairy substitute.

When I was diagnosed, I was heading rapidly towards a lupus diagnosis. Luckily it was caught early enough, and the lupus-like symptoms reversed fairly quickly once I went gluten free. For the first couple of months I had intolerance problems with nuts, legumes, nightshades, and sugars. Any of these would cause a flare up of a photosensitive rash or hives, or ezcema. The reactions did die down gradually as I stuck to a restricted whole foods diet. Now I still have to be careful of sugars, too much fat, still have to avoid dairy and can only eat the occasional gluten-free substitute. I am mainly grain free now too, which helps with the fatigue and brain fog. That is a different issue though.

BTW - if you need a cooking oil, I found rice-bran oil to be the least troublesome. It has a high smoke point, so is good for frying and baking. Maybe some baked veggies might be tasty and more filling than boiled sometimes?

I do hope you find something you can eat soon, and that your psoriasis also dies down quickly.

Best wishes

[bartfull]

Hi Bartful, I am so sorry you are feeling so rough at the moment. I could be about to write a complete load of tosh, as I am no scientist, am still fairly new to this life, and don't suffer from psoriasis, but I did just want to offer the few thoughts that I can muster from your posts, as well as my moral support.

Firstly - you didn't mention whether you feel you are healed inside from the gluten damage or not. I am working on the assumption that gluten has been an aggravating factor in your psoriasis problem, and that if you have not healed up, then you might still be more sensitive now, than you might be in future, once your gut has healed properly.

I gather you are struggling with your vitamin levels, which might mean you need to gain some weight too. Looking at what you say you can eat (white rice, chicken, pork, steak, cauliflower, broccoli and eggs), although limited, this is, I think, a complete diet. The egg boxes from my supermarket say that each egg contains 25% of the RDA of Vitamin D. I would suggest eating lots of eggs if you tolerate them well. I do. I eat 3 eggs for lunch or dinner on many days, scrambled in a non-stick pan with no added fat. I suggest eating it with some veggies or with any further meat or fish protein that you can tolerate. Failing that, mixed up with some white rice, but this would not be as nutritious for you.

What worries me is the dairy thing. I would be strongly tempted to take this out for a few days to see if that helps, as it is such a common allergen, and known problem for unhealed celiacs.

There is no fish in your diet? Oily fish is great for calcium and vitamin D, and for good fats too, which are also high in energy. If you can't buy fresh, try tinned salmon, tuna, sardines etc. Baked or fried white fish should be good too from time to time.

You don't mention nuts or coconut? Perhaps you don't tolerate them well? If there is any of them you can tolerate, they would be great to add in to your diet, especially coconut, which is also a decent dairy substitute.

When I was diagnosed, I was heading rapidly towards a lupus diagnosis. Luckily it was caught early enough, and the lupus-like symptoms reversed fairly quickly once I went gluten free. For the first couple of months I had intolerance problems with nuts, legumes, nightshades, and sugars. Any of these would cause a flare up of a photosensitive rash or hives, or ezcema. The reactions did die down gradually as I stuck to a restricted whole foods diet. Now I still have to be careful of sugars, too much fat, still have to avoid dairy and can only eat the occasional gluten-free substitute. I am mainly grain free now too, which helps with the fatigue and brain fog. That is a different issue though.

BTW - if you need a cooking oil, I found rice-bran oil to be the least troublesome. It has a high smoke point, so is good for frying and baking. Maybe some baked veggies might be tasty and more filling than boiled sometimes?

I do hope you find something you can eat soon, and that your psoriasis also dies down quickly.

Best wishes

Gail, thanks for the input.

I do eat a lot of eggs. I usually mix them in with the rice, meat, and cauliflower, along with some cheese.

Dairy has never seemed to be a problem for me. Do you think it could be causing digestive harm without symptoms?

I LOVE seafood, but unfortunately I live in a small town in the midwestern US where the only seafood available if farmed fish from China. I won't eat that.

Coconut and almonds have bothered me. I don't know about other nuts yet. I can't seem to get healed long enough to try adding them back yet. I want to try BLUEBERRIES next. I loved blueberries before all this hit, and I know they have anti-oxidants and are good for me.

I will make sure to report back after seeing the nutritionist on Sunday. In the meantime, I'm having a MUCh better day than yesterday. Thanks to all of you for the shoulder!

[UKGail]

Hi Bartful

I'm happy to hear you are having a better day today. I really felt bad for you yesterday.

Shame about the seafood. Living in a small island like the UK, we forget that a lot of the world can live a long way from the sea. Do your supermarkets not stock decent tinned seafood? For me, that has become a real store cupboard staple for a quick and healthy lunch (I usually dash home from the office for lunch as I am not too good at organising food to go which I can tolerate).

I know what you mean about almonds. I am having some problems with them too. I can't decide whether it is due to cross-contamination or to their high level of fat.

If dairy doesn't bother your digestion, that's great, I envy you as I miss it badly. It just niggles with me that you are grappling to find triggers for your psoriasis, and dairy is such a common allergen, especially for celiacs. It just seems too good to be true that you tolerate it. Maybe I am just jealous? Dairy reactions can be weird too. I have a colleague who happily takes milk in her tea, but can't have any trace of butter in any food or her throat swells up badly. Work that one out if you can!

I hope your appointment with the nutritionist goes well, and that she has some good suggestions for you.

[dilettantesteph]

Hi Bartful, you have my sympathy and support. I am fortunate enough not to be sensitive to corn or soy, but I am sensitive to teeny tiny amounts of gluten. I also have had a very hard time finding a diet that works. I don't eat anything bread like anymore, but I don't miss it now.

You may already know my suggestions. Keep a food/symptom journal. That really helps when you are trying to figure things out. Keep track of brand names, not just ingredients. Only add one new thing a week, sometimes it takes awhile for symptoms to become apparent. Stick to low ingredient and unprocessed foods. Look up what foods are high in whatever vitamins you need and try to get your needs taken care of that way.

It is great to have a basic safe diet to return to when you have problems. Try to develop one, even if it is just a few foods. Try to find yourself a treat that you can handle. I have a very expensive honey that I eat by the spoonful. It is the only sweet that I can tolerate, and it sure helps when I am feeling deprived.

Try to remember when you are feeling down that it is the gluten talking and it will get better. It can take a lot of work to get a safe diet, but when you do, you find that it was worth it all.

[biancanera]

Right after starting this thread a friend came in to my shop with is sub sandwich. He picked up my bowl of rice and chicken with his gulteny hand and I told him he had just contaminated my food. When he said he thinks I "go a little overboard with this food stuff", I lost it. I didn't even know I KNEW such foul words as came out of my mouth! After I screamed at him I started sobbing. He left. I'll probably never see him again. At this point, I don't even care.

I have nothing to add except complete understanding here. I hate that some people can't understand how serious contamination is. Most people just think I'm really snooty and it gets on my nerves because it's not my fault I'm highly sensitive!

I wish people could be more understanding and I'm really happy I found this board.

[bartfull]

Gail, I can't eat anything that comes out of a can because they are now lined with a type of plastic made with CORN. I HATE it that corn is hidden in almost every food there is.

I really don't think dairy is bothering my psoriasis either. I get no symptoms whatsoever from eating cheese and butter. I'm wondering if maybe the reason leafy greens and sweet potatoes give me digestive problems could be from candida. I'll be asking the nutritionist about that for sure.

My wish is that I can find the energy I have lost, get back to eating all of the fruits and veggies that don't work for me right now, and maybe find a good recipe for biscuits or pancakes that I can tolerate.

[Avalon451]

Ugh, so sorry to hear about your horrible psoriasis! How frustrating. Well, here's the place to bellyache, we all understand! I certainly do enough of it!

I dunno, I'm thinking about doing a full-on elimination/cave man/ rare foods diet. Open Original Shared Link

I kind of get what he's saying about how your body is stressed out from the inflammation, and needs to get away from the foods it has become used to and possibly built up a sensitivity to. Maybe after 3 months of eating stuff that doesn't stress your body out, it will calm down, heal and start to tolerate those allergens again. At any rate, if you add them back in one at a time, you can find out for sure what exactly you are sensitive to.

Sure hope you can find something for now,though, that fills you up and makes you feel good! Hang in there!

[UKGail]

OMG Bartful - you have it tough! I hope the nutritionist can suggest a way to get the calories into you without filling your stomach up too soon.

I suspect the answer lays somewhere in high fat foods and as many eggs as you can bear, and working on the range of veggies and other foods as a secondary target. That's all a bit over my head though.

Can you tolerate baking any of your veggies in oil? (I think the smoke point of butter is too low for this approach). You might be able to do this for carrots, beetroot, maybe cauliflower, really any sort of starchy root vegetable is good? Rice bran oil may be the best bet, if you can find it, if sunflower or other vegetable oils are no good for you. (Can you tolerate products from plastic bottles, or is it just cans that are bad?) Its not the healthiest way to prepare food, but it should fill you up, and probably delivers more calories and nutrients than filling up on white rice. I lose weight if I don't have several main meals a week using a large portion of baked veggies. (I am trying to more or less avoid grains as it seems to help me with the brain fog and fatigue). However for me it is a balancing act as I can't handle too much fat in my diet.