Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newbie, seeking advice....

Thanks for your reply James. I have read many similar situations as yours online. Lots of people have had problems with the biologics. I don't feel like myself anymore. I can't even explain it. I just feel like I am in a daze and have to push myself to think straight. I hope you get some relief for your skin. I have psoriasis and can't imagine how those blisters must feel. Thanks for the link too. God bless.

There is a variety of low-starch/no-starch diets that people are following here after personal experimentation, so you can't necessarily stick with your first attempt and achieve good results.

For me, skipping grains but eating fruits and vegetables was not nearly enough. It seems I am currently VERY sensitive to starch and other complex carbs that appear even in several starch-free vegetables, such as "FOS" in asparagus and artichokes
http://en.wikipedia.org/wiki/Fructooligosaccharide

Most fruit has some level of starch in it, and even fruit like blueberries or pineapple that aren't supposed to have starch can have a bad batch if you're unlucky
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=406487#Post406487
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=391238#Post391238

Lately I've eliminated lactose as well; that seems to be a common problem too.

My recent experiment with coconut flour went down in flames, even though coconut flour works fine as a staple for several others here.

Even the amount of starch in supplements or medicines can be enough to sabotage you!
https://www.kickas.org/ubbthreads/ubbthre...true#Post406584

So, I recommend getting that book James suggested AND heading over to the diet forum and write a post with the foods you have been eating, so people can look it over for likely suspects and suggest alternative foods.

Hi, chefPam.

Welcome to the board. I'm a newbie here, too. I haven't been Dx'd w/AS, only referred out for evaluation.

The hair loss rings a bell w/me. My hair fell out in clumps following the birth of my first child back in 1982, and periodically thereafter. Spring of 2009 was the worst. That's when I was at the height of my falling apart.

Upon testing (NutrEval), it was discovered I had multiple nutrient deficiencies, Third World-like and most were severe. I imagine that played a major role in my hair loss and other CT problems.

Moreover, I couldn't bend w/my back, it was too painful to bend w/my knees and I had to wear compression gloves and wrist and thumb splints on both hands. The pain and disability were so great that I know I would have killed myself if I could have used my hands to root through the closet and find a handgun.

You see, I can't take pain meds or anti-inflammatories due to drug intolerance. My entire life I've had serious reactions to most drugs I've tried, Rx and OTC. Ditto herbal and homeopathic remedies. I think in part that is probably due to the inert ingredients e.g. lactose, sorbitol, cornstarch - all of which are problematic for me.

Last year, at age 51, I found out I have two inborn errors of carbohydrate metabolism, in addition to Ehler-Danlos Syndrome Type 3. However, none of those would explain my galactose and starch intolerance or why fish and leftover chicken and pork triggers neuromuscular meltdown in me.

IME, the best way to identify any food intolerance is to go on an elimination diet. Start out with a single food item for a week, a meat, no additives or seasonings (as most are choked full of sugars and starch and fructans). If you chose poultry, be sure to get those with no additives as many, although minimally processed and labeled "all natural", contain broths or other so-called natural juices that contain starch, sugars, etc. If you tolerate that, add a new item in 3 days. Again, no seasonings, condiments or additives. If you have any new or worsening of symptoms, discontinue the newly added item and wait until those symptoms completely pass before trying a different one.

All I can eat is freshly cooked meats, white rice (albeit all other starches are majorily problematic for me), egg whites, Nucoa and 100% pure dextrose. The slightest deviation and I turn back into a giant contracture w/living rigamortis. Although very restrictive, the diet has given me back my body and I've even resumed farming, my passion.

I've learned to Listen to my body and in doing so the answers I'd been searching for all those years were finally forthcoming. I hope you can do the same. Best wishes,

Deb Mc

WOW Deb. That is overwhelming. I am going to get the book mentioned to begin with. I live in Ky and there's not even any places around here that sell organic! I am beginning today with taking some new vitamins that I have researched that help fight inflammation, but even those were hard to find. Goodness gracious it seems you are very limited in your foods. I am so glad you have in fact found out what helps and our getting your life back. I have had everything known to man tested and just don't know what is going on with me. Thanks for replying.

Hi,

Oh man I know the pain and confusion like you and everyone here. NSAIDS worked for me to a point until I couldn't consume enough without my stomach getting upset. Humira was a miracle for me, but just recently I've started to have issues...I don't know yet if it is Humira related or because of a temporary discontinuation of another drug I take for Ulcerative Colitis. Yep...lately I've been talking with God a lot more.

Hang in there.

John

Thanks John. I go back to the dr on Monday to see what we can come up with now. I think I am done with biologics for so many different reasons. I just hope there's something that will help. I guess if our pain brings us closer to God then in the end it's all worth it. It would just be nice if the ride was a little smoother, huh?