Celiac disease and PCOS just sucks!

Brief summary of my 2009…

3 weeks of rectal bleeding in jan/feb led me to gastroenterologist in march, who said i had internal hemorrhoids, but then also suspected celiac disease bc i had been feeling very sick for no good reason for 2+years, which was tested and found to be positive. gluten-free diet has gotten my pcos under control, in addition to my many celiac symptoms. early september, i started to get sick again, even with my careful eating. every meal i ate, i became nauseous and would gag for about 5 minutes. every meal. no matter what i ate.  it was so frustrating bc i had just gotten used to NOT being sick anymore. i knew what had been wrong, but now, mysterious nausea was in my life. also had severe back pains every so often on my right side, and also grew a strange lump on my right hip. so i began my quest to find out what was wrong. i went to my primary, who consistently said i was too young to be worried about anything. lump was a lipoma. didn’t know why i had nausea or back pain. but she found blood in my urine. so i went to a urologist , who ordered a ct scan. found a stone in my right kidney, but nothing to worry about yet tho’ it could be the cause of back pain. however, not the cause of nausea. by this time, i was gagging for over a month, every meal. went to my gastro again, who ordered another CT scan in case anything changed. nothing changed. still a small kidney stone, but nothing else was wrong. fed up with my mystery, i stopped going to drs. my primary basically made me feel really stupid for even going thru all the tests and dr visits. after about 3 months, it eventually disappeared on its own, tho’ not completely gone. then came the holidays, which wreaked havoc on my diet… ate lots of things i shouldn’t have… felt like, i wasn’t 100% anyway with GF diet, so i let loose. my periods, which were coming every 35 days, increased to every 40-ish days. i was getting tired all the time, living with frequent headaches, and bloated. oh gluten, why does my body hate you so much?

And now it’s 2010.

i’ve gotten my eating under control once more. no more holiday gatherings to mess with my head and tummy. but i have to say, it really sucks having to be so careful about food. it’s one thing to say i’m going to be healthy and eat better, eat more naturally, and eat organic. but there’s gluten in just about everything!!! even the healthy, organic stuff. around the time that i was gagging, i also started to become a little adverse to meat (but did not cut it out of my diet). probably bc greasy food made me more nauseous than other foods. and i still have the nausea gagging every once in awhile, about once a week. so there’s only so much salad I can eat. i’m finding it harder these days, but i’m still fighting my urges to eat wheat bread, pasta, and other foods with gluten in it bc i know how terrible i feel when i do eat it, and how it causes my body harm.

~sigh~

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link between celiac disease and pcos II

i previously wrote about a possible link between celiac disease and pcos, and for me, that possibility is stronger than ever. my menstrual cycles were about 65 to 90 days apart, pre-celiac disease dagnosis. i always thought it was pcos that caused me to have the extra weight, the constant bloating, and the hormonal outbursts. esp this past year, aside from the illnesses, i didn’t have periods that were less than 3 months apart. dx and gluten free diet began mid march. my first “real” period on may 10 (see previous blog). and i was waiting to see if i had to wait 3 months or if i could possibly become regular again.

drum roll please… 5 weeks… that’s only 35 days… i have another period. can you believe it? and i have a feeling i ovulated too. i woke up a couple of weeks ago with extreme pain in my right lower abdomen. i thought my appendix had burst, and i couldn’t move, almost woke up the hubbie to take me to ER. i forced myself to lay on my right side, which made it worse. then i moved onto my left, and the pain slowly subsided. a couple of days ago, i happened to come across another woman’s comment, on a site that i don’t remember the name of, who said after going gluten free for some time (also has pcos), she had sudden pain and thought her appendix had burst. she went to the ER, and it wasn’t her appendix. one of the cysts in her ovary burst, and she had ovulated. lightbulb!!

for those of you who have pcos AND celiac disease of gluten intolerance, we have hope. eating gluten free is extremely important. it’s difficult and frustrating, but when i think of how good i feel, how i don’t have emotional outbursts anymore, i have zero bloating and am losing weight steadily, and no more physical pain, i don’t want to eat foods with gluten. there have definitely been days when i gave in, and i knowingly and willingly had a gluten meal. since dx, i think i had 3 such meals. there were also times when i unknowingly had gluten. but these little bumps are ok, and we need to get back on track afterwards. please share your stories. i really enjoy reading about how lives are being changed for the better once we get the ‘evil’ gluten out of our bodies.

for those of you who have pcos but do not know if you have celiac disease or not, please find out. and even if you don’t have it, try cutting out wheat and other gluten foods. eat lots of fruits, veggies, and protein (w/o gluten sauces).

good luck out there! i will try to post more often, but with 2 little ones, the days just fly by. i do a lot of research online about celiac disease and pcos, but don’t always get to put my thoughts together to write them down. if you ever need more info or have questions, please let me know. it will definitely help me to write more.

happy mother’s day!

i know it’s not mother’s day anymore, but i wanted to write about what nature gave me for mother’s day. i woke up sunday morning with my period. full blown nastiness. what most women experience on a monthly basis. i was trying to remember the last time i had my period. with pcos, it’s always a surprise for me. i think it was in january. almost 4 months ago. anyway, my ‘usual’ abnormal periods came after about a month+ of bloating and out-of-control hormones. this time, though, i felt bloated for about a week, and then my gift came just in time for mother’s day. it felt very “normal” … i haven’t had a period like this in a very, very long time. now i’m wondering if it’s bc of my gluten free diet. i’ve been gluten free for about 8 weeks now, and i haven’t felt better. all my bloating has gone down, i have energy, i feel motivated to do more during the day, my headaches are gone, and i’m happier. and now, a regular period? well, i think it’s regular. so now the big questions… will being gluten-free regulate my periods? will i ovulate again? will i be able to conceive normally? hmmm. possible link between celiac disease and pcos… to be continued.

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.

my medical mysteries solved

all these years, i thought i was just prone to indigestion, nausea and vomitting. since i can remember, i was sick several times a year from ‘indigestion’, spending days at a time in front of a toilet. when i was younger (grade school all the way to high school) docs thought it could be my appendix or i was just too ‘sensitive’. but i didn’t have insurance and i never had any tests done. in college, i often became ill but i thought it was just the stress and lack of sleep that made me ill. studying was hard too bc i could never handle coffee or anything else that contained caffeine that would keep me up, like all the other students. just thought i had a ‘sensitive’ stomach. i found out this week that i have a gluten intolerance, possibly celiac disease. but let’s back up and solve my other medical mysteries first.

in 2001, about 5 or 6 months before my wedding, i woke up with ringing in my ears, which i found out later is called tinnitus. i had bouts of vertigo here and there, but the day i woke up with tinnitus changed my world. soon after getting up, very irritated that i couldn’t get this annoying sound out of my head, i became dizzy. then the vertigo came. the room started to spin and i lost my balance. it was like this for many, many weeks. i couldn’t go to work, which at the time was teaching for a not-for-profit special ed organization. i loved my job, but i couldn’t take an hour long subway ride into the city. i could barely walk in a straight line. i went to an ENT who, of course, didn’t know what was wrong. he said he checked everything… no hearing loss, everything looked ok. but he did say he couldn’t look into the inner ear and that was probably where the problem was. thanks for nothing. i went to an internal medicine doc who said i should get my head checked out. did an mri. became so nauseous that i had to vomit during it, but they told me if i did, i’d just have to come back another time and do it all over. so i held back my tears and my vomit for as along as i could, and as soon as it was done, i let it all out. they didn’t find anything. my parents (which brings up another mystery to solve to be told at another time) thought i was just being ‘sensitive’ again and took my to a korean neurologist and did an ekg or eeg, i don’t remember, but it came back fine. he told me i was JUST ANXIOUS about my upcoming wedding, and he gave me a drug called paxil. btw, the wedding was in 9/01 which we booked in 9/00 and all the planning was done by 12/00 (i was a freak about getting everything done early). so i knew i wasn’t anxious, but no one listened. paxil made it worse, so i stopped taking it. which made me want to die!!! not only was i dealing with tinnitus, loss of balance, and vertigo, but now i felt like my head was being split open with a hammer and i just wanted to DIE. i thought, maybe it’s withdrawal, so i took paxil which relieved my suicidal thoughts. doc didn’t even tell me how bad it could be and how to slowly wean off the drug. i figured it out myself and weaned off. back to my medical mystery… no one could tell me what was wrong. by now, i had been out of work for 2 months and my supervisor somehow arranged it so that i was still getting paid and had my insurance for the rest of the school year, but i was able to stay home and figure out what was wrong. she was an angel. then one day, my fiance came over one weekend and took a long poop in my bathroom. thank goodness he did bc he picked up my ny times magazine to read while on the can and read about the rusk institute and how they help people with balance problems. i was still in my spinning world, and i was unable to read, look at the computer, or go anywhere. basically, my body was keeping me prisoner. as he read about the people who received therapy there, it seemed they had a lot of the same symptoms as i did. i made an appointment the next day and i was finally told they knew what it was and they could help me. i had a vestibular disorder in the inner ear. they did all these tests, even went on some nasa made machine which spun me around. then the therapy came. lots of exercises to help the brain and body deal with my imbalance of inner ear stuff (sorry for the lack of technical terms, but i don’t remember). did this for 2 months, and i was better. at some point, i was walking by myself again w/o losing balance. i was taking public transportation again. i was going to be able to get married. to dance at my wedding. to live life again. and just in time. august was my last month of insurance and the end of my therapy. september was my wedding month. i still have tinnitus and still get vertigo/dizzy spells every so often, but it’s under control.

once married, it became painfully obvious that there was something else wrong. every time we tried to have sex, we couldn’t. it was just too painful for me, and my vulva was always red and irritated. this lasted for for a long time before i sought help. i just didn’t want to go to another doctor. as patient as my husband was, i felt bad for him. in 2002, i went to 4 obgyns before i got the proper diagnosis. first it was a possible UTI even though i showed no symptoms. treatment did not help… bc i didn’t have a UTI. then i was told it was bc i was a newlywed. i was ‘inexperienced’ and anious. treatment included a hot bath and lots of wine before sex. did it work. nope! the next just didn’t know… dumbfounded. or maybe just dumb. i finally went to an obgyn who was an infertility specialist. i don’t know how i found her and why i chose to go see her, but i did, and i was glad to. as soon as she checked me, she knew immediately. vulvodynia. she gave me a numbing agent. which helped the pain, but didn’t make it much fun. numbing agent. ’nuff said. prognosis… it can go away on it’s own, or not. sometimes child birth can make it better. or not. for now, suffer. but at least i knew what it was. present day, i do no have pain anymore. after my first daughter was born in late 2004, we noticed my vulva wasn’t as red and irritated anymore.  a year later, and the pain was still there but not as bad. after my son was born in late 2007, hardly any pain and it’s becoming enjoyable for me. FINALLY!

2 medical mysteries solved. 2 more to go.

august 14, 2003. this day has a long story in itself because of the blackout that hit the northeast. for me, it’s like 9/11, which happened 2 weeks before our wedding. those are 2 days when i remember where i was, what i was doing, and all the little details. my father had been sick for some time with an unknown illness. he fainted that day and was admitted into the hospital during the blackout. he had pancreatic cancer and had 6 months to live or less. he lived 5 months and died 1/9/04. but for those 5 months, i desperately tried to get pregnant in hopes that he would live to either know he would have a grandchild or possibly beat the odds and live to see his first grandchild. after a couple of months, i knew something was wrong. i went to my obgyn, the one who diagnosed me with vulvodynia and was an inferility specialist, and although we hadn’t been trying a year, i lied and said we had. she took a bloodtest. my hormones were out of balance and i was diagnosed with pcos, poly cycstic ovarian syndrome, which basically means i don’t ovulate. i had always had irregular periods, knew that something was off, but never thought i couldn’t get pregnant. sometimes, it was 60 to 90 days between periods. my obgyn started me on clomid. the first month didn’t work. she upped my dosage. then my father passed away. i’m sure the stress didn’t help, but we decided to keep trying. 2nd month didn’t work again. obgyn added metformin, which you take for 3 weeks in increasing dosages. the 3rd week, i got sick and had to go to er. 3rd month didn’t work. she upped the clomid dosage and took out metformin. if it didn’t work this time, she said we’d go to injections. for us it wasn’t worth it. i was sick all the time. i was stressed out. plus, all this time, i still had vulvodynia, so it made trying to get pregnant quite a challenge. i was crying a lot bc of the pain, and yet we had to keep going. it was terrible. so this was it. we would stop if it didn’t work this 4th month. but it worked, and that’s how our first came to be.  with my 2nd, it took 2 months since we already knew which dosage worked. it was much easier the 2nd time around. the hard thing with this pregnancy was that he started as a twin but it became a vanishing twin. we saw the 2 heartbeats at 6 weeks and 7 weeks. at 8 weeks, the fertility specialist (a new one) noticed one was growing but the other wasn’t. by 9 weeks, the heartbeat was getting weaker. “we’ll see” she said “but it doesn’t look good.” by 12 weeks, it was gone. but my 2nd was healthy and growing. and i had gestational diabetes with both pregnancies, which is more likely when you have pcos. now, i’m still living with pcos. my periods are still 60 to 90 days apart. my skin breaks out around when i should be getting my period but don’t (probably when all the cysts are growing but don’t ripen, thus the lack of ovulation) and then i stay ‘hormonal’ until i do, which is many weeks later.

and my final (and hopefully last) mystery was solved this week. like i said at the start of this long blog (sorry!), i had always had problems with indigestion and my stomach. i grew up doing a lot of vomitting, had nausea all the time, and had frequent headaches. for the headaches, i was told in 2000 that i had migraines. in 2002 or 2003, i was told i had ibs after my pcp (primary care physician) found blood in my stool and i had a colonoscopy done. the gastroenterologist at that time also told me i had fissures. early 2008, i was feeling sick more than usual and was vomitting every other week for 4 months or so. i also had diarrhea and loose stools. i went to my current pcp, who did an ultrasound of some organs and found nothing. but she said it wasn’t normal for me to be so sick all the time and suggested i go to a gasatroenterologist. my previous experience with a gastro dr was not great so i decided not to. when i had my 1st colonoscopy done, the dr made me fell very small and stupid for even being in his office. “why are you here. you’re too young to have any problems. you have fissures. just don’t push when you have to go. do anal exercises.” i kept telling him that i never strain. i’ve never had a problem like that. i sit and go instantly. sometimes 3 or 4 times a day. he didn’t care. he said i was straining and i had to learn not to.  i never wanted to go to another one of those again. and my pcp thought i had ibs bc i had stomach problems, and i was going too much. late 2008 into 2009, i noticed my stools were loose again. then i had bloody stool for about 3 weeks. i’ve had hemorroids before, esp during and after pregnancy, but they never lasted 3 weeks. so i sucked it up and found another gastro dr. what a great find!! he asked lots of questions, and really went into all my past symptoms. ordered bloodwork, colonoscopy and endoscopy. said i was tender in upper abdomen. possible heartburn/acid problems. bloodwork came back positive for gluten intolerance. endoscpy showed that i had polyps in stomach (very common), which he removed and awaiting biopsy report. waiting to see if i also have celiac disease or if it’s just an intolerance. but no more gluten for me and the family. i’m also going to test my kids and stressing to my birth mom and sister to get tested as well. but he said it looked like i had been gluten intolerant for years, not just a recent thing. but also not born with it. he also tried to do colonoscopy but i was moving around too much, ‘thrashing’ is the word he used. so he did a sigmoidoscopy which showed inner hemorroids. then asked me to get a barium enema since i was already flushed out and he’d feel better if he could get a complete picture of my gi tract. i didn’t know what it was so i said ok. barium enema is NOT ok. and i really hope i don’t have to do it again. so no i’m just waiting for all the results to come in. but at least i now know that most of my nausea, vomitting, diarrhea, general malaise was due to gluten. who woulda thunk? not me.

so last night i threw out almost all our gluten products (i’ve saved a few things for the kids until we know for sure and we’re going to let them finish off what we have for them) or saved unopened nonperishable items for donation, and went shopping for gluten-free items. for the most part, my husband is in it with me and we’ve agreed that the whole family will be gluten free. it’s a process, and having gone through gestational diabetes twice, i know what it means to change your diet. but this is for life, so it’s definitely a big change. i’m reading about it online every day. i’m surprised how it affects people. being gluten intolerant doesn’t seem like a biggie, but reading about how sick people get from the smallest exposure to gluten is surprising (and scary). yesterday, i ate some leftover thai curry. i didn’t think there was any gluten in it, but about 30 -45 minutes after eating, my nausea, headache and indigestion came back. and it lingered for hours. i drank lots of water and i was immobile on my couch. was it the gluten? is this why i’ve always felt like this almost every day for years?

if anyone has read through this, thank you. it feels good to let it all out. i have so much to say, but i’ve said enough for today. more blogs to come. about lots of stuff~