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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4 thoughts on “Celiac disease and PCOS just sucks!

  1. Liz says:

    just found your blog and am learning a ton. thank you for posting your valuable experiences. i just started going gluten free (95% of the time. sometimes, i give in to toast!) about a month ago. i’ve decided to be 100% for 90 days. wish me luck!

    and thanks again for having your blog

  2. mamachun says:

    GOOD LUCK! it’s really tough but worth it. i was pretty much 100% gF from april ’09 to oct ’09. i felt good, had more energy, and when i was re-examined 6 months after diagnosis, my small intestines were completely healed. but the past 3 months have been very bad for me, and trying to get to 100% gF is an uphill battle. i’m so glad you find this blog helpful!! thanks!

  3. Taximom5 says:

    Just found your blog, and OH, does it all sound familiar! I had the PCOS, the gluten problems, even the Meniere’s symptoms. I just wanted to share with you that the Meniere’s symptoms can be caused by B12 deficiency–which can be caused by the intestinal damage from celiac, OR can be caused by being on acid blockers. They block the acid that you NEED to properly break down and digest the B12.

    I didn’t find this out until I had already been gluten-free for 3 years–I was still on prilosec, and had the first bout of dizziness, tinnitus, fuzzy hearing, etc.

    I also found out that you have to WEAN off prilosec, or at least wean your way down. It doesn’t say so in the package insert, and none of the doctors I talked to had any idea about this, but apparently, you get a HUGE rebound of acid reflux if you quit cold turkey, which makes you think you need the acid blocker when you might not. (I think they don’t tell you about this in the package insert because they want you to keep buying it forever…)

    Anyway, look into methylcobalamin sublingual B12 supplements–they are available over the counter, and are supposed to be almost as effective as B12 shots. And check out http://www.pernicious-anaemia.org, they have a lot of info there about B12 deficiency.

    For the Meniere’s, check out http://www.menieres.org/forum/index.php/topic,25945.0.html

    And for the celiac, hang in there! I found that when I went gf, my kids became gluten-lite–and many of THEIR problems disappeared, like eczema and tummy aches. We have a completely gluten-free house, and I’ve never looked back. The kids know I will make a home-made version of whatever they want, and it will taste good, and they are happy not to have tummy aches.

    You also might want to be very careful with vaccines–never more than one at a time, and make sure there is NO thimerosal, as a family history of autoimmune disorders makes one at MUCH more risk for vaccine reactions. The flu shot and the H1N1 shot (both of which are totally unnecessary anyway) both contain thimerosal unless you get the nasal mist (which spreads live virus cells) or special-order an expensive individual-dose ampule.

    My autoimmune nightmare was triggered by getting three vaccines at once.

  4. Taximom5 says:

    I recommend getting Annalise Roberts’ “Gluten-free Baking Classics’ and “Gluten-free for the Bread Machine.” You can order gluten-free flour that works pretty much like regular flour from http://www.betterbatter.org, and they have terrific recipes on that website. I make the challah bread recipe (i whip it up in the stand mixer and then dump it in the bread machine for a quick rise and bake–no kneading necessary!), and it makes AMAZING toast and it also works great for PBJs!

    I hate to say this, but whether it’s celiac or “just” gluten intolerance, you have to be 100% off gluten. Studies show that as little as 1/40 of a piece of bread can cause visible villi damage even if you can’t feel any symptoms. And that’s all it takes to trigger autoimmune problems, which are NOT FUN.

    Sorry to sound so preachy, just trying to help…

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