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!!!

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.

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?