Intro

[Jenn]

Hi Everybody!

I'm here for my mom. After something like 3 years of constant cramping, diarrhea, vomiting, a removed gall bladder (for no apparent reason now) & several BS diagnosis, my mom was finally diagnosed with Celiac Disease at the end of 2007. She is 65 & though I have repeatedly suggested she start visiting forums for knowledge & support, I still don't know if she will show up here or not, so I figured I'd come for her.

The whole process of even getting diagnosed made me want to strangle several doctors which is a hard task to accomplish when you live 800+ miles away from them all! Some of them are so damn ignorant of this disease that it just becomes a game of "How do I know which doctor is really helping me?" So, now that she is "officially" diagnosed, her doctor is now alluding that she may also have Crohn's disease as well. I say alluding because he's never outright said so & just says ambiguous things like "Well, you might have Crohn's but I'm not sure". That was enough for her so she now thinks has that too. Do any of you have any experience with having both Celiac & Crohn's? If so, how are you handling it diet -wise?

[Fidissimus]

Hey Jenn, I know you've only been here a short time but I was wondering since Celiac is genetic and runs in families, have you been tested for it since your Mom has it which increases the likelihood that you might have it too.
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[computerdyslexic]

Does your mom faithfully adhere to a gluten free diet? I am almost through the diagnostic phase, still waiting for the results of my biopsy, and I have spent hours every day for weeks on the internet reading everything I can find about celiac disease. I am 65, a nurse, and never considered the possibility that I had celiac. Everything and every site cautions that the only help for celiac disease is a life long GF diet. If your mom continues to eat gluten, even in small amounts, she will continue to have bowel complaints and separating the celiac from Chron's will be impossible. I hope your mom will go online to learn all she can. This is a great site and it often includes good links to other sites. If she isn't really comfortable going online maybe you could print out some information for her. If it helps, tell her I absolutely hate the diet because I am the pickiest eater in the world, but I do accept that if I have celiac the GF diet is my only hope to feel better.
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Nancy in New York's Finger Lakes
Rescued Siberian huskies Zeke, Vixen, Duke and Moxie
Rescued DSH cats Timmy, Toby and Madeline-Rose
Please Google to learn about prosopagnosia, a neurological condition also called faceblindness.

[ostrich]

Hi Jenn! Welcome! I just wanted to say a couple of things regarding this statement:

[teacherpat]

Getting her some books might be be useful too. Not anything by a talk show host . Celiac Disease: A Hidden Epidemic by Peter Green, M.D. is a nice simple place to start.
And a subscription to Gluten Free Living magazine.
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Pat

[Fidissimus]

And/or Living Without Magazine.
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[Jenn]

Hi everybody & thank you all for your comments & questions.

She was diagnosed with Celiac two years ago & I got her subscription to Living Without at that time & I do know she still receives it.

Hmm, as far as using the internet goes - she sure knows how to use email to send tons of FWDS. She does know how to use the internet, she's just bad at being a "joiner" so to speak. Even so, I own my own forum for Cake Decorators & I explained to her that this one was very similar to mine & extremely user friendly. I walked her through how to register but she's never come. So, I figure I'll just be "psuedo her" & report back.

I have sent her various links to posts here & some articles to read as well.

She has not FULLY embraced eating GF & I say that because right after she was diagnosed, I was visiting her & we went grocery shopping. She continually picked things up, read ingredients & then went "I can probably eat that". I was fed up with that & we got into a fight about her health & that she couldn't be irresponsible with this & that every time she does this stuff, she gets sick. Soooo, now she tries very hard to avoid cross contamination, but my dad will not go GF at all. While I understand that plenty of people live in "combined" households, sometimes my parents are not super conscientious about it & the end result is that she gets sick. So, I told her to just quit BUYING the gluten stuff at the grocery store for him because he WON'T buy it himself & he doesn't do the shopping. I made her sick during my last visit in July because I gave her the last of my smoothie which she watched me make & we both knew there was no gluten in it. Well, turns out she can't eat flax seeds either & I had ground them & included them in the smoothie - which she suggested. After she got sick, she realized it was the flax seeds so I asked her WHY they were even in the house if she can't eat them because I know darn well my dad isn't eating them so I assumed based on the fact that they were in the house & he doesn't eat them, that she was eating them. And of course, I felt terrible that I had made her sick. So it's little frustrations like that & I just can't seem to get her to get that house completely gluten free. WE are all going to TN in November & my fiance & I are not bringing any gliten to the "party" & will eat GF all week, thus forcing my dad into eating GF as well.

I have not been tested. She continually tells me to get tested, but I'm just not that worried about it to be honest. I don't really have any IBS type symptoms or anything like that, but should they develop, I'd get tested. My older brother is way more freaked out about possibly having it then I am. Probably because I've really done a lot of research about it & if I end up having it. I'll adjust OK. I keep my pantry stocked w/GF flours as well to try & come up with GF alternatives to breads that I can then pass on to her.

Elizabeth Hasselback's book - oh yeah, let's all rush right out & get that. She IS an expert affter all. I think my mom has some reading material on the subject but my fiance sent her a link to a site that she has been using almost daily now so I know she is reading more & more these days.

Wow - sorry so long & ranbling, that was not my goal at all. I just wanted to properly respond to all of you!

[celiacmaine-iac]

[teacherpat]

Even if you don't have symptoms you could have "silent celiac" and be getting osteo. Osteo is awful, I have the bones of an 80 year old now. Please don't risk having it catch up with you later. I've lost 3/4 of an inch in height
I wish, wish, wish I'd been dx'd sooner.
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Pat