:: back to life ::

It’s been 5 years since my last post, and I hid this blog, knowing I wouldn’t be touching it. I apologize to those who found it, asking for permission to view it, and received no response from me. I’m sorry. It’s time for a resurrection. I need an outlet to write and share, learn and teach, give and get. So here… we… go!

This blog started in March 2009 to document and share my experiences being a mom and having many, often unexplainable illnesses. My last post was in January 2010, a very short-lived blog. Now it is February 2015, and a lot has happened. Most recently, my family moved out of New York and are settling in nicely in Georgia. The biggest change was going from a family of 4 to a family of 6 with the addition of twins! This is just my intro back to blogging, but I will be looking back on some health and mom issues I’ve had in the past 5 years, and sharing from my todays as well. Off to put the twins to nap and start on my slow cooker dinner~

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~

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.

the return of e

after 2 long, heart-breaking months… my little boy has returned. no, he didn’t go anywhere physically, but he completely stopped eating and became a different baby.

ok, not completely, but this is what his entire day’s food intake consisted of… a small handful (not grownup hands, baby hands) of cereal for breakfast, 2-3 balls of plain rice (about the size of a bottle cap) for lunch, and the same for dinner. for snacks he ate 1 cracker or 1 fruit strip. we offered him tons of stuff throughout the 2 months, but he’d either make a face and run away, try it and spit it out, or just cry. the only thing that kept him going was MILK.

and not that he was a great eater anyway (unlike his big sis who’ll eat anything and eat lots of it), but still, he had an eating routine that just vanished. about 2 months ago, around his 15 month checkup, he stopped eating yogurt and oatmeal for breakfast, soft fruits and veggies for lunch, rice and protein for dinner, and handfuls of yummy snacks in between. at first we said it was bc he was sick. then he was teething. then he was sick again. then teething again. then he wasn’t sick or teeething, but still not eating.

so then i thought (after getting diagnosed with celiac disease a few weeks ago), maybe it wasn’t bc he was just sick or teething. maybe it’s celiac disease. he hadn’t grown or gained much weight at his last checkup. he wasn’t eating but he always had a bloated belly. and his poops were consistently either diarrhea or very soft & runny. it never really firmed up, even after solids. every once in a while, he’d get constipated and then he had little hard pellets. and as an infant, he projectile vomited every week or so and would poop every 5 days. not normal. oh, and he also vomited breast milk, which is why i stopped breast feeding a little before he turned a month. so since birth, he’s had belly problems.

so, after finding out i had celiac disease and that it does run in families, we made an appt with a pediatric gastroenterologist, but it wasn’t for another month. being a mom, i couldn’t stand around and wait while he kept not eating. so i decided to try probiotics with him. they have this great probiotic kefir drink for kids called Lifeway Probugs. i hoped he’d drink it, and he did. at first, bc it was so yummy, he’d drink the entire serving. but after a few days, he slowed down to about 1/2 a serving every day. BUT the result was amazing. he was pooping real, normal poop. no more diarrhea, which only came back on days when he didn’t drink it or only drank very little. and to this day, he’s pooping normal poop. and he started to eat again. maybe his belly was a mess and the probiotics healed it. i don’t know for sure, but i’m a BIG believer in probiotics now and started to drink kefir myself. and it all started with my daughter.

i started giving his big sis chewable probiotics a little after she turned 2 and was taking those chewable multivitamins. she was suffering from these recurring bacterial infections in her private area and backside, where she’d get these nasty, painful pimple-like bumps every 3 to 4 weeks. doctors were baffled, even the immunologist. this went on for several months (5 or more?). no one could help us, and they finally told us to take her to an infectious disease specialist. i wasn’t sure if they’d be able to help, so i took matters into my own hands and figured probiotics might help. since the infections were always where she peed or pooped from, i figured it had to do with her belly. then the interesting part… when we’d forget to give her the probiotics, she immediately got the infections again. even if she missed just 1 or 2 days. after a couple of runs back to the doc for antibiotics and even while we were in VA for vacation, we never forgot again. and she’s been infection-free ever since.

we suspect she may have celiac disease too. she eats well, but a little too well for her age. sometimes we have to tell her to stop bc she eats so much. that was like me. i could eat and eat and eat, and i’m not a big person. i could out-eat lots of guys. and my little c could out-eat many adults. plus the bacterial infections, the eczema (which she’s had since she was a couple of months old), and lately stomach aches. 

i really hope neither of them have celiac disease but it sure would explain a lot. but for now, i’m very happy that e has started to eat again. and both will be eating gluten until their appt, along with their probiotics.

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.

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