an update & my visit with dietician

pre-celiac dx, i thought it was my pcos that made me feel crappy all the time. the bloating, the weight gain, the cravings & wanting to eat all the time, the hormones (OH THE HORMONES), the missed periods, and the fatigue. and i thought it was my meniere’s that caused the headaches, the dizziness (sometimes vertigo), the foggy brain, the nausea, the vomitting, and the 24/7 tinnitus. yes, some of these are bc of pcos and meniere’s. BUT… let me tell you. i feel so much f-in better post-celiac dx.

i still have my occasional gluten attacks, as i’m still testing food out. even the stuff that says gluten free can sometimes surprise you. i had an incidence this weekend where my father-in-law wanted to much to make me something to eat. he used rice flour to make mochi, and was very careful while handling/making it. but i immediately got sick. the package did not state what kind of facility it was in, and being a large korean company, they probably made wheat products in their facility. i have decided not to trust korean products. btw, when will the FDA change the gluten-free labeling to say that products CANNOT be GF if their shared equipment, and sometimes even shared facility, produces wheat products. that’s for another rant, i suppose.

anyhoo, my benefits post-celiac dx. i have lost weight. i have lost all my bloating. no more headaches. no more foggy brain. no more nausea. more energy. much happier, less angry (esp toward my kids).  no more cravings. no more eating all day. i get so full on such a small portion of food. i try to eat the most nutritious foods now, bc i just can’t eat as much as i used to.

benefits i hope to see in the near future… no more tinnitus, regular menstrual cycles, no more vertigo attacks.

i went to see a dietician/nutritionist on friday. although i have researched and learned lots from the internet, i went to see her anyway, bc i could always learn more. she gave me some helpful advice and gave me a bunch for lists, which i will post up this week to share with everyone. but the one thing i left with was this: we don’t know everything, especially when it deals with the body. doctors don’t know everything. they should never say never, no, or definitely not. who knows if celiac disease is connected to pcos or meniere’s. maybe, maybe not. but we just don’t know yet. so for those of you who don’t feel well, fight to be tested if you think you have a certain illness. most docs won’t test for celiacs. i think most don’t even know much about it. as i’m sure you’ve read, it is the most under-diagnosed and misdiagnosed  disease out there. also, i read in passing somewhere that doctors spend about 20 minutes learning about celiac disease (if not their specialty) in their entire medical schooling. i was lucky that i found a gastroenterologist who knew about this and spent time asking about my past and present symptoms, even though they had nothing to do with why i was there in the first place. sometimes you don’t get lucky and you have to go “shopping” for a good doc. it took me 4 docs before i found an obgyn who knew to test me immediately for pcos. 

don’t give up!!!

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link between celiac disease and pcos

for women with pcos, we’re told to eat a low-carb diet. we have a higher chance of getting gestational diabetes. a higher chance of diabetes later in life. insulin resistance. we feel bloated all the time, tired all the time, gain weight easily, lose weight slowly (or sometimes not at all). then there’s the fact that we don’t ovulate and cannot get pregnant on our own.

for women with celiac disease, we cannot have gluten (found in many carbs). it is an autoimmune disorder. when we eat gluten (well, at least for me), we’re bloated, gassy, fatigued, and overall not well all the time. there’s a definite link to type 1 diabetes. there’s also a link to infertility.

now, i’m not a genius, but doesn’t there seem to be similarities here? i googled celiac and pcos together on a search, and it seems many women with pcos are also celiacs. the following link is one of many (and more recent) discussions i found of women writing about their pcos and celiac disease.

http://www.celiac.com/gluten-free/index.php?showtopic=54666&pid=503226&mode=threaded&start=#entry503226

here’s a link to a study done in spain re: pcos and immunity.

http://www.ovarian-cysts-pcos.com/news38.html#sec2

and another link that suggests a link between the 2.

http://www.bellaonline.com/articles/art1507.asp

i don’t think it’s a coincidence that i have celiac disease, pcos, and meniere’s… i really think the 3 are connected. not everyone will have the same connections, but it seems that celiacs always have a 2nd, 3rd, or more of another autoimmune disease or other disorder/syndrome. who can we ask, encourage,  and/or pressure to have more studies done about celiac disease and these connections? if celiac is the underlying disease, then shouldn’t this become a part of everyone’s annual physical? if caught early, others may not have to struggle with the other diseases/disorders/syndromes/illness that seem to come with it.

today… miserable

i love that there’s so much info out here on the web, but sometimes, it’s very frustrating to find exactly what you need. too much info can be difficult to sort thru. i just want a simple, gluten-free life. i’m now researching gluten-free non-food products. i soaked myself in a bubble bath last night (for a long time), and today, i feel very, very sick. i have not changed my bath and beauty products yet, and i think it’s time. but trying to find things that i like and are reasonably priced is proving to be a challenge. some ppl say a product is good.. then i read about the same product being bad. so i’ve decided to stick to 2 companies. burt’s bees for my bath & basic beauty products and afterglow for my makeup (which i don’t wear much of but still need a few things). please see these 2 company links on right side of blog. i can’t sit here and research every product, so i have to go with companies i can trust, right?

what i’ve changed so far:

1. food – about 80% gluten-free (my kitchen must contain some gluten for the kids until they get tested)

2. kitchenware – new cutting board & toaster, threw out colanders & all rubber/plastic storage containers & utensils (tonight we’re going out to get some pots, pans, and utensils – it seems that cast iron cookware is popular among celiacs)

3. bath & beauty – just starting & will be throwing out everything today (will pick up a few things while out shopping for kitchenware)

gosh, this celiac thing is no joke! seeing a nutritionist tomorrow, and i need suggestions for gluten-free vitamins & probiotics. i looked it up online, but too much stuff came up and got a headache trying to sort it out.

gluten free pizza at UNO’s

http://www.imperialvalleynews.com/index.php?option=com_content&task=view&id=4801&Itemid=2

Gluten Free Lifestyle Goes Mainstream

Friday, 20 March 2009

San Diego, California – The tears rolled down her cheeks, trying to hold back an inescapable rush of emotion as she slowly chewed. However, these were not tears of sadness but tears of joy. For a child who was simply eating a slice of pizza, this is not what would typically be expected, but for Maggie Reilly, 14, the chance to finally eat pizza was an experience she never thought she would have – and she had never been more grateful.

Maggie Reilly is an average American teenager in many ways, but until January 2009, she, had never eaten a pizza outside her own home.

“My daughter was diagnosed with celiac disease when she was three-and-a-half years old. Throughout her life she watched from afar as her friends enjoyed the dish at parties and events,” explained Lisa Reilly, Maggie’s mother, as she wiped the tears from her eyes. “She always had to bring other foods to eat, and as a result, she felt excluded from many events. It broke my heart to see this, and I know it hurt her to have to go through it.”

Celiac disease, which affects approximately 1 percent of the population, is a digestive disease that damages the small intestine and inhibits nutrient absorption. There is no cure for celiac disease — patients simply have to avoid all products that contain gluten, including bread, beer, pasta, most baked goods and pizza.

Experts estimate that 3 million people have celiac disease, while another 7 million suffer other medical conditions, like wheat intolerance or allergy, that necessitate gluten-free diets. According to surveys conducted by the Gluten Intolerance Group, 15 to 25 percent of consumers look for gluten-free products, even if they can digest the gluten protein.

Food manufacturers and restaurants are taking note. Uno Chicago Grill, for example, is the first national casual dining chain to introduce gluten-free pizzas.

“Food allergies are a very serious, sometimes life-threatening issue for many Americans,” said Uno CEO Frank Guidara. “Pizza is our signature product, and we wanted to offer a gluten-free pizza so all of our guests could enjoy it when dining at Uno.” The chain spent over a year developing a crust that lived up to the Uno name.

The Reillys are certainly grateful. When Uno held a tasting for 350 celiac patients at the Massachusetts Bay Community College’s Wellesley Hills Campus, mother and daughter showed up to help sample an iconic food, since Lisa works for Uno — and Maggie wasn’t the only one crying. In fact, nearly every celiac disease sufferer broke down at some point during the event.

For more information, visit http://www.unos.com

my biopsy confirms sprue

gastroenterologist’s office called back. my polyps were benign, my barium enema showed “nothing remarkable”, and my small intestines were positive for sprue. i’m officially diagnosed with celiac disease. i’m sad that i won’t be able to eat my favorite foods, and being korean, i won’t be able to eat most korean dishes. but i’m very happy bc now i can control what i eat so that i don’t have to feel sick every day. I DON’T HAVE TO BE SICK ANY MORE!!

it’s hard, though. i had another gluten attack today, either from a new organic salsa i tried (GF ingredients, and a statement that separate machines were used for wheat products) or from the non-stick pan i used for breakfast. it’s not a new non-stick pan, and i just learned that gluten can remain on non-stick cookware even with thorough washing.

…still learning…

link between celiac disease and meniere’s disease

i had another gluten attack this morning. my 3rd since being told not to eat gluten. this thing is tough to get a hold of. my husband made me an omelet for breakfast… all gluten free ingredients – egg, bell pepper, onion, cheese, and canadian bacon. after a few bits, i realize something doesn’t feel right. i start to feel nauseous and my head gets a little foggy. i stop. “are we sure the canadian bacon and cheese are GF?” the ingredients seem fine. but the bacon doesn’t say anything about where or how it is made. as i lay down and try to keep the nausea in check, i conk out and don’t get up for hours. i’m still feeling sick, but better.

during my nap, my husband did some more research and realized we used our gluten filled cutting board to chop everything. “seriously?” that was what probably caused the attack. a contaminated cutting board. now we need to to out and get me my own cutting board and toaster.

he also found that celiac and meniere’s may be linked. both are autoimmune diseases. apparantly, some ppl with meniere’s felt their symptoms lessened with a gluten free diet. although never officially diagnosed with meniere’s disease, i always felt that i had the symptoms for it. i’ve had meniere-like attacks since my big attack in 2001 (for which i went to physical therapy rehab for at rusk after no one could figure out what was wrong… for more on this, please read my first post), but still never went to the dr bc i thought i’d be told they couldn’t hep me again. but if i can have that under control with a GF diet too, then all the more reason to be strict with my food intake. very strict.

what did we do w/o the internet?

a trip to the big top

my kids went to their first circus this weekend. zing zang zoom! they both loved it.

my 4 year old was yelling out “zing zang zoom” at all the right moments, wiggling her magic fingers for all the magic acts, and completely in awe of the acrobatic acts and animals. her favorite part was when the elephants came out. 11 huge elephants… sitting, standing, posing, holding each other’s tails, and being very cute.

my 1 year old just loved the music and lights, clapping and laughing. his favorite part was when he got his hands on his sister’s light up, spinning circus toy and wouldn’t give it back.

my favorite part was during the human cannon ball act. the performers sang a song “don’t do this at home” every time there was a dangerous act, and they sang it again before shooting 2 women out of side-by-side cannons. chloe turns to us and says, “we can’t do that anyway, we don’t have those [cannons] at home.” she cracks me up!

afterwards, we had dinner at a vietnamese restaurant. i had pho, hoping it wouldn’t me me sick, and it didn’t! yay, another place i can eat at serving yummy gluten-free food.

gluten free doughnuts

Ingredients:

  • 2 eggs, beaten
  • 2 cups buttermilk
  • 1/4 cup butter, melted
  • 5 cups rice flour blend*
  • 1 cup sugar
  • 2 tsp baking soda
  • 1 tsp baking powder
  • 2 tsp salt
  • 2 tsp xanthan gum
  • 1 tsp nutmeg

Directions:

1. Combine eggs, buttermilk, and melted butter in a large bowl. Mix well with a wire whisk or fork.
2. Combine dry ingredients in a separate bowl and add to the wet. Mix by hand with a large spoon. (Do not use an electric mixer).
3. Let batter rest for about 15 minutes. Turn dough onto a well-floured surface. If dough is sticky, work in more rice flour blend.
4. Roll dough 1/2″ thick. Cut with a doughnut cutter.
5. Fry in 1 to 3 inches of very hot oil (375 degrees F) until brown on one side. Turn doughnuts over and brown on second side.
6. While doughnuts are still warm, toss in a mixture of white sugar & cinnamon to coat. Serve warm.

*NOTE: Rice flour blend is 6 parts rice flour, 2 parts potato starch, and 1 part tapioca starch

~ from time to time, recipes i want to try will be posted so i have them all in one place :: thanks to thebakingbeauties.blogspot.com for this recipe ~

a lesson in cross-contamination

being newly diagnosed with gluten intolerance, i have a lot to learn. i mostly cleared out my kitchen of gluten containing products. i shop exclusively at wholefoods and traderjoe’s bc they have a good selection of gluten-free foods. but really, i keep thinking, how bad could it be if i ingested a little gluten as opposed to to a lot of gluten? well, i learned it doesn’t matter how much gluten it is… even the tiniest bit affects the gluten intolerant.

i purchased barbara’s rice puffins, which clearly states gluten free. and trader joe’s says all of their dairy products are gluten free on their website. so, e (my son) didn’t eat all of his breakfast, so i decided to finish it yesterday morning, thinking both items were gluten free. well, a little after finishing off the yogurt and cereal, i got a bad headache and felt unwell. then i read from other ppl’s blogs and discussions that flavored yogurt may contain traces of gluten. “traces” of gluten was making me sick. this morning, my husband informed me that the cereal, although gluten free ingredients, was made with equipment that also makes products containing wheat, which means the cereal also contains traces of gluten.

well, i’ve learned my lesson. READ ENTIRE LABEL! just bc it says gluten free doesn’t mean it is gluten free. i had such a headache yesterday and was in such a fog, i couldn’t drive my daughter to school. back before the diagnosis, there were many days when i was “sick” and couldn’t do much. and the rest of the days were just a slightly better “sick” where i did do stuff but never felt great. and now that my body has become a no-gluten zone, thanks to the colonoscopy prep cleanse, it reacts to even the slightest bit of gluten.

so there it is — our house needs to become a completely gluten free house.

so what do i do when i go out for weddings, parties, and other get-togethers? it’s not like i can raid the kitchen and read all the labels. and cross-contamination would be everywhere! i can’t even use the toaster for gluten free bread if it was used for wheat bread. or even a cutting board.