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Member Since 18 Oct 2012
Offline Last Active Oct 15 2014 04:22 AM

Posts I've Made

In Topic: Is There An App Or Website For Checking Ingredients?

12 July 2014 - 05:01 AM

Thanks.  I did find that list and have it bookmarked, but at the grocery store, it would be handy to have an app on my phone.  Any app developers out there :D

I saved this list to Evernote on my laptop and can access it from my Evernote app on my phone.  You can also save it to Pocket on your computer and access it from your phone through the Pocket app.  Both Evernote and Pocket are free registrations (there is a paid version of both with more features but you don't really need them), and their corresponding Android/iOS apps are free as well.

In Topic: Emotionally Right Back To Where I Was 18 Months Ago

27 April 2014 - 11:42 AM

I have been gluten-free & diagnosed for over 4 years.  I have not developed any additional intolerance or autoimmune diseases.  I know several people locally with Celiac Disease who don't have other issues.  I know one girl with a lot of allergies  but she has had those since birth.  Some "intolerances" are normal in lots of people - even non-Celiacs.  For example, many people are lactose intolerant.  This is just a  normal fact of life.


I would say that the majority of Celiacs do not have a lot of other problems pop-up when gluten free. The ones who continue to have problems post on Forums.  The ones that are doing well- don't.  I really think the vast majority of Celiacs are doing well and you won't see much about them.


I used to work at a Children's hospital.  We had a neonatal intensive care doctor.  The only patients she ever saw were the exceptionally sick or very pre-mature patients.  She didn't get the "just a bit pre-mature" or a "little bit sick" ones.  She got the worse ones.  Many died.  She never treated well or normal babies.  When she got pregnant,  we asked her if she was more worried than a normal mom because all she ever saw were the sickest babies.  She said no. She realized that the babies she treated were a very small minority of all the babies born in the world.  Its like that with Celiacs - the majority of them are doing well, we just don't see them on these forums/blogs.


Hope that rambling story was helpful.   :wacko:


I meant to reply to you sooner...sorry about that!


Your story wasn't rambling at all.  It clarified the situation for me in a way that none of my well-meaning but non-celiac friends could.  The neonatal ICU nurse story was a perfect example.  It's similar to being afraid to fly after hearing about a plane crash.  Of course the news is going to report (endlessly, it seems) about a plane crash or mishap without even mentioning the thousands of planes that land safely every day in this country alone.  When my anxiety is that high, however, all logic goes right out the window.  Compounding the situation is that my OCD kicks in and I obsessively research everything celiac-related I can find, distressing myself even more.  I seem to go looking for trouble.  :)


Thanks to you, and to everyone who responded, for being my voices of reason.  I'm feeling better.

In Topic: Emotionally Right Back To Where I Was 18 Months Ago

27 April 2014 - 11:34 AM

Yeah, I think that any doctor who would say that is kind of a jerk. Just because something is hereditary does not mean you will get it. My father has glaucoma and I never give it a second thought. He is on eye drops to control the pressure in his eyes and has not lost any vision and he is 81. I see an ophthalmologist because I have Sjogren's Syndrome and have dry eye and told her and she did not seem too concerned. I have perfect pressure in my eyes and she even told me that doesn't mean I will get it. She is one of a few doctors I have had that I actually like for her level headed answers. She is not a scare monger.

I think part of the problem is that people get sent to a different doctor for every problem. Even if you are managing your health issues well, they want to send you off all the time for the ever popular "monitoring". Some health problems may require this, especially if you aren't doing all you can to manage it but not all problems need constant attention, if you pay attention to what is normal for you and what is not.
I have 4 autoimmune issues and I have never gone to a Rheumatologist. I have never heard of a satisfied patient that goes to a Rheumy.
They tend to push meds that you may not need. I kind of cheat because I have my thyroid doc do some of the blood work for my other issues so I can check them myself. They keep improving so no need to see yet another doctor for now.

I think everyone who eventually was diagnosed with Celiac has had the IBS with paranoia/ stress thrown at them. Really insulting, especially considering IBS isn't even a real diagnosis. Yeah, thanks for telling me my bowel is irritated.......I never would have known without your highly professional input!


IBS seems to be the "go to" diagnosis when the doctors can't figure out what's wrong with your gut and don't know enough about celiac to test for it.  My dx was a fluke...the G.I. doc I went to for the pain under my ribs ordered an endoscopy suspecting gastritis.  Turned out negative for that but positive for celiac.  Glad he found it, but then he showed his ignorance about the disease by telling me it was ok to cheat occasionally.  Uh...no.

In Topic: Emotionally Right Back To Where I Was 18 Months Ago

26 April 2014 - 12:11 PM

The one thing to remember is that everyone, regardless of whether or not they have Celiac Disease, could develop a problem as they get older. It's called the aging process.  However, that does not mean you will develop further problems from Celiac.  I have 3 other autoimmune diseases from going so long with undiagnosed Celiac and will turn 55 years old in June and I am doing great.  I am so optimistic, it pisses people off.  :lol:  I just cannot waste one moment of healthy life worrying about what could or might happen down the road. I know that can be difficult sometimes and we all have our moments of anxiety but if you follow a strict gluten-free diet, exercise doing something that is fun and you enjoy and take part in life on a regular basis, then you will be doing all you can to ward off potential problems.  You are also only 18 months into the gluten-free lifestyle and I bet you didn't know that seratonin is made in the gut?  It is and 18 months is just the beginning of long term healing, so give it awhile longer and you might find the anxiety receding because your gut will continue to heal and your brain will be happier.  I will add that exercise does amazing things for anxiety and worry.  I can go into the gym after a bad day and do my weight training and cardio and when I leave an hour later, I am so mellow and all the bad is banished.  B)


To be very honest, I also do not go to the doctors as much as most people.  I go when I need to but I find they are Debbie Downers myself and actually try and instill too much fear in people.  I know they see a lot of sickness but really...no need to instill chronic fear in the rest of the population.  You seem to have found a great nutritionist, which is good.  But get out there, exercise and enjoy life.  Do the things you love often.  It really helps.

Some doctors are awful.  When I was still trying to get a diagnosis, one internist told me it was IBS due to stress.  He gave me prescriptions for Lexapro and Xanax and actually said that I would end up institutionalized if I didn't get a handle on the anxiety.  Can you imagine?  I had one horrible reaction to the Lexapro and never touched it again.  The Xanax remains unopened in a desk drawer.  An eye surgeon who was called in to examine my elderly mom in the E.R. when she fell a couple of years ago and struck her eye socket discovered macular degeneration (she was 85 at the time).  He told me it was hereditary and I could expect it to happen to me.  What was the point in telling me this?

In Topic: Emotionally Right Back To Where I Was 18 Months Ago

26 April 2014 - 11:54 AM

It helps me when I feel anxious to remember how badly I use to feel.  I haven't lost it all.  Don't forget to enjoy how strong, clear headed and energetic you are.  I also need to remind myself that when I am having a low day, that it will pass.  I tend to lose hope very fast and feel as if I am dying again.  But so far, after a few days I am feeling better again.


Are you sure some gluten didn't sneak in to spoil your feelings?





The thought crossed my mind that I could have been accidentally glutened, as my anxiety hadn't been this high since before DX, but after retracing my steps I still can't figure out where it would have come from.  In any case, I'm feeling MUCH better...everyone's positive, supportive replies have helped me calm down considerably and I went out and burned off some of this excess nervous energy yesterday. Some housework still needs to be done, but after that it's time to kick back and put my feet up to relax.


Thanks again to everyone.  Hope you're having a great weekend.

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