Wednesday, February 18, 2009

The Sin of Gluten-y

Just before New Year's I went back on the gluten-free dairy free (GFCF) diet. I'm making great progress with regaining my health. I have almost no headaches anymore- didn't even get my pain meds refilled last time.

I'm also doing Chi Gong, which is somewhat similar to Tai Chi. It is a healing art, adn you don't need to be strong or young or even flexible to do it.

So when I posted on facebook the other day that I was making a tasty batch of gluten-free dairy-free bread in my bread machine, i got lots of questions about gluten - what is it, why am i not eating it, should they stop eating it, and what's my recipe for bread.

My recipe is to buy a bag of Bob's red mill bread mix (available in many grocery stores in the organic food section or at www.vitacost.com ), add rice milk instead of milk and olive oil instead of butter, put it in the machine and wait 3 hours for extremely tasty bread. So much easier (and tastier) than when i went gluten free in 1994!

Many people assume I have celiac disease when I mention I'm eating a gluten-free diet. I do not feel obligated to tell them that I have a lupus diagnosis, and I prefer not to mention that diagnosis, esp. since my blood tests now say otherwise. So I just say (because I think words matter),"No I don't have celiac, but i have a history of other autoimmune problems, and this helps prevent a recurrence." It's not that I think I'm cured, I just believe that I am free from disease at this moment and i want to stay that way- and I know I have to be vigilant in order to stay that way. Not just in what I eat, how I manage stress, but also what I say.

But the interesting thing is Celiac is *also* an autoimmune disease! And according to the book "Alternative medicine" (future medicine pub.) 100% of lupus patients have food allergies.

As to why I chose the gluten free/ dairy free diet, it was originally suggested to me by an MD (who is a pretty progressive guy, is into nutrition and chelation therapy and other stuff that other doctors would give him a hard time for). I had a food allergy blood test and i did come up sensitive to wheat- and cheeses and milk. Other practitioners have since brought it up (after I fell off the wagon). I've done it 3 times now, about a year the first and second times, and it really works. My energy returns, my face clears up, my headaches disappear and other symptoms improve as well.

So if you're intrigued and wondering whether you might have a gluten sensitivity, and therefore could improve your health b y eliminating gluten from your diet, here's an article to check out:

http://ezinearticles.com/?Gluten-Intolerance-Symptoms---How-Do-You-Know-If-Gluten-Is-Making-You-Sick?&id=479404

and here's Bob's wonderful bread mix:







Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
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http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

12 comments:

N Disguise said...

You mentioned a while back you planned to go see Dr. F. Did you do this, is this how you came to the diet? Is the diet what led to your good blood test?

Carla Ulbrich, The Singing Patient said...

oh yeah i never made it to dr fuhrman. but i've done the gluten free diet successfully twice before. and just the idea of what dr fuhrman- seeing his book without even reading it, jsut the cover "eat to live"- is doing motivated me as well.

yes it definitely is helping with all my symptoms. i'm sure that the diet plus the chi gong and acupuncture all made it possible for me to get way better than i was able to get just using drugs. and now i'm off nearly all of them, practically free from headaches, sleeping better, and i notice my sinusitis seems to be much better as well.

Sophie - LFA said...

Hi there ...

I am hoping you can help me rally all the "lupus troops."

March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

To learn all the easy things you can do from the comfort of your home, please go to http://lfa-inc.blogspot.com/2009/02/even-if-you-cannot-be-in-dc-for-lfas.html

To take it a step further, if you're willing to do so, I'd really appreciate it you would consider posting this information (what you find at the link to my blog) on your blog, and letting all your friends and family know how important this is to the lupus community.

If you have any questions, feel free to email me at davis@lupus.org.

Thanks for your help.

All the best, Wick

TRONMomma said...

I have Lupus AND Celiacs! I strongly recommend gluten-free pantry, though I'm not sure what the dairy content is like. I'm just starting my health related blog up, hoping to find tips, and maybe offer some too. I'm at http://healthysickchick.blogspot.com not official or certified or anything, but hopefully I can find some fellow friends. Great to read your work!

zu said...

You say a book says 100% of lupus patients have food allergies-- do you mean allergies or sensitivities? It looks like my 15yo son has lupus-- we're in the middle of the diagnostic process-- but he's been thoroughly tested for allergies and has none. He's never had any symptoms of allergies of any kind either. Still, I'm considering trying a gluten-free diet, just because my husband thinks he (dh) is sensitive to it. Thanks for any info you might have.

Carla Ulbrich, The Singing Patient said...

hi "ZU"
definitely give the gluten free diet a shot- and by give it a shot, i mean, give it your all for a couple months, long enough to see results, get back blood tests and see if it was working.
All autoimmune diseases seem to respond well to cutting out gluten.
Gluten is a protein found in wheat, barley, rye and oats.
there is gluten free food out there, including gluten free "junk food" which you can either buy or get recipes for.
as to going dairy free at the same time, it does make it harder, but it might help.
try just gluten free at first to make cooking easier.
i decided pizza was just not worth kidney failure! (and there is some great gluten free pizza out tehre- your son doesn't have to give it up).

it will also be easier if you either all go gluten free and do it together. i'm sure he already feels life is punishing him enough by having to deal with a chronic illness so young.

or you can put the "nono" foods out in a separate part of the house, such as the basement or garage, because when you're 15 you're hungry!!!

unfortunately our food supply has become very toxic because the food chain is filled with chemicals pesiticides and preservatives, many of which are not required to be listed on the package. thus, the growing number of people who can't eat foods like wheat and peanut butter.

hope this helps!

Carla Ulbrich, The Singing Patient said...
This comment has been removed by the author.
Carla Ulbrich, The Singing Patient said...

oh regarding allergies vs sensitivities- jenny mccarthy's book on the GFCF diet (gluten free casein free, casein being the protein in dairy) is about her autistic son's amazing progress after going on this diet (in her case, after her putting him on the diet, because he was very young and couldn't reach the fridge door).
her son did not test positive for wheat allergy, but responded amazingly to going gluten-free.

i don't have a severe allergy to wheat. the allergy tests said "mild" allergy. But my extremely positive ANA and double stranded DNA tests went negative.

it is not the only piece of the puzzle. i have ben under tons of stress over the last 2 months, and my tests have slipped back into the slightly positive area. the diet is really powerful, but you can't ignore the other parts of your life and abuse or neglect yourself. we need love, joy, rest, and the diet. we have to make friend with fresh fruits and veggies.

Carla Ulbrich, The Singing Patient said...

and finally, please know that you have to go completely gluten free, and for that you will need to find a book about it. gluten is in places you wouldn't dream of, like soups, salad dressings, even soy sauce.

zu said...

Thanks very much for the replies. I know quite a bit about GFCF because a close friend's daughter has celiac, and also because I'm part of the autism community, where many try the GFCF diet. In fact we tried it some years ago, for several months-- both GF and CF-- but it had no effect. Probably because neither of my sons has ever had signs of allergies, ear infections, digestive issues, etc. I'm sure parents of children with allergy issues have more success.

It's my understanding that if you have a real gluten allergy, like celiac, you have to eliminate every bit, like you say, salad dressings and so forth, and use separate cookware, but if you're merely sensitive, you don't have to be as strict. This is what I'm hoping anyway, as there would be no way to convince my husband to adopt a GF household. I'd do it in a minute but Dad doesn't quite get it, yet he's probably the only one in the house who would benefit! Go figger.

I failed miserably today with my first batch of quinoa...

What are double stranded DNA tests?

Carla Ulbrich, The Singing Patient said...

double stranded DNA tests look for antibodies. it's a test they run when they think the patient has lupus.
http://www.muschealth.com/lab/content.aspx?id=150084

allergies and addictions are closely linked. it's always folks who are addicted to soemthing who can't envision life without it. so it doesn't surprise me that your hubby, who would benefit from a GF diet, doesn't even want to acknowledge that there may be something to it. denial is powerful!

aside from the gluten free debate, the other thing that has done wonders for me, besides pacing myself, is acupucnture and chi gong. the chi gong takes me about 10 minutes a day. it's very gentle and easy like tai chi, but simpler to learn than tai chi. and unlike a diet change, it doesn't matter if anyone else in the house is on board or not.

Tracy said...

A friend recommended that we try the GF diet with my son who has Asperger's Syndrome. I didn't think it was fair for him to do it alone, so I did it, too. I knew that I had a history of troubled pregnancies because of my ANA numbers, but I had no idea that 25 years of migraines were related to gluten. Since beginning the GF diet, my migraines are gone and I feel great. My son's behavior greatly improved after just three days! He struggles a little bit with the diet, not because he doesn't know what to look for, but because he wants to be a "normal" kid. I can always tell if he sneaks right away though, because his ears turn flaming red.

Zu~ My husband was not in support of this at first, so I didn't tell him at first. Don't give up what you love and try to find GF foods that you are willing to eat. Some taste really good; some not so much. Start with what you already like and substitute where necessary. For example, I still make a roast with carrots, onions, celery and mashed potatoes, we just skip the rolls. For dinners with meat and potatoes or rice, I substitute cornstarch for flour in the gravy (it's less lumpy anyway). We have substituted pasta and found GF versions of other foods we like. It turns out that we kept so much of what were already "staple" dinners that it doesn't really seem like we gave much up. My shining moment was when I made chicken fingers (w/ tapioca flour~ my fave) and my husband said, "What did you do differently? They've never tasted so good!"