Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group help please

I am having trouble eating (malnourished)- went no starch a month ago but I think the fruit and vegs that I try to eat are not ripe when they are picked. Canned fruits & vegs are loaded with preservatives so I have trouble digesting them. Can not swallow vitamins. Need something other than eggs & cheese - having trouble chewing ground meats now becasue of jaw pain. Any recommendations would be greatly appreciated. does anyone know of a protein powder (without starch) ?

Thanks for any replies,

Mary Alicia

Hi Mary. It sounds like you're in a pretty terrible place and I feel so badly for you - hopefully people here will have lots of suggestions for you.
When my jaw was really awful in the past, I ended up having to blender everything, and I mean everything, and spoon feed myself - anyway to get some sort of nourishment into me. Not terribly appetizing, but it got food into me.
Also, could you look into liquid vitamin supplements? Maybe add that to a "dinner" smoothie. Don't hold back in your consumption of good fats and oils too.
Hope you begin to improve soon. Hang in there.

maryalicia, you have my sympathies. I spent about 2/3 of last year unable to eat most food and, on some days, even get anything near my mouth due to my supposed trigeminal neuralgia.

Regarding protein powder(s) without starch, a whey powder that I have tested and is negative for starch (thanks, Alecia) is the Jarrow Formulas Unflavored Whey Protein. You can get it on the cheap from Lucky Vitamin (like 50% less than Vitamin Shoppe or other outlets). I'm about to switch over to an egg protein powder that is supposedly starch free, but I have not yet tested it. It is from Healthy N Fit Nutritionals. Another egg protein that is advertised as being starch free is from Vitol Products. Again, Lucky seems to have an attractive price compared to, for example, Vitamin Shoppe. You may find better deals from other online retailers. I'm just going off of experience.

I throw about a tablespoon of coconut oil, protein powder (whey and sometimes hemp), a cup of frozen mixed berries, about a cup of frozen pineapple, a whole sliced frozen peach (sometimes), about a cup or so of Stoneyfield Farm plain yogurt, and a cup of rice milk (starchy, I know, but it will be replaced by almond milk soon enough). Sometimes I also add a tablespoon of raw honey.

During my issues of last year, I also ate a lot of homemade chicken salad. I would chop up onion, garlic, parsley and carrot (problem for some) and mix it into the chicken salad. I'd eat it with corn chips (LSD at the time).

Other things I did included: pureeing lightly steamed broccoli, pureeing lightly steamed carrots (again, LSD at the time), juicing fresh vegetables (I have a juicer at home) and eating lots of eggs (since they could slide right down my throat), and tuna salad.

I, more often than not, couldn't touch my lip or chew but the littlest bit. Therefore utensils were not an option at all. I hope your situation is different in that it is difficult to chew foods that require more effort to chew, but that you can still use utensils. This may allow you a greater variety of foods. Do you eat any fish (cod, salmon, etc.). They don't seem to involve a lot of effort to masticate the food.

I do take a digestive enzyme with every meal since my digestion is "sub-optimal". There are many varieties out there. Solgar (most of their supplements are starch-free) makes at least two digestive enzymes that are starch-free.

Could you chew soft items like coconut flour muffins?

Should I think of others, I'll post again.

Jay,

Thanks for advice - can you use mayo in the tuna/chicken salad or a substitute ?

Maryalicia - how about home made soup from home made bone stock. That way you would have good nourishing broth that you can use as a base for pureed veggies to make veg soup. Will need good bones from the butcher - ham bone makes a tasty base as well for soup.

All you veggies will act as thickening and, you could buy frozen veggies, which are picked fresh and quick frozen! Then use as needed.

Cottage cheese is good and nourishing. Have you thought of Quinola? Delicious - could use in your soups as well.

Know how horrible this is, went through a week of jaw problems right after C'mas...not much fun

Good luck with the sorting.

Molly
Keeping on Keeping on

hi Mary-

Have you tried spoon feeding yourself baby food? I did that when my jaw was real sore. Humbling, but you get the nutrients

I use Hellman's with no problem.

FYI...

The Healthy N Fit Nutritionals egg protein (Vanilla Ice Cream flavor), for those interested in protein powders, tested NEGATIVE for starch using iodine. It's also quite delicious.

Mary Alicia, I wish I had some advice but I know nothing about NSD.....but the responses look promising. I really just wanted to say I'm sorry you're going through all of this....I hope it gets better for you real soon!

Hi Mary Alicia

"IsoFlex" whey Protein Isolate by
Allmax Nutrition also tests negative with iodine. I have vanilla with real vanilla.

It has rapid absorption and isn't thick like alot of protein powders when mixed. You can mix it with milk or juice. I too am having trouble with jaw right now.

You can read about this stuff at www.ISOFLEX.CA

Hope this helps a little. Feel better. God Bless, Trae