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Celiac and Discouraged

Member Since 25 Nov 2012
Offline Last Active Dec 04 2012 04:44 PM

Posts I've Made

In Topic: Constant "ribcage" Pain

26 November 2012 - 08:33 PM

I have had unrelenting "ribcage" pain for months and during that time I have not been able to sneeze or take deep breaths. There is too much pain that any attempt to sneeze or take a deep breath is immediately halted. I have pain in both the front and back of my ribcage. Nothing seems to get better despite dietary and physical activity changes. I have stopped going to the doctors due to their incompentence/ignorance and lack of empathy. If anyone has any ideas or suggestions please reply. Thanks.

I used to get severe pain and didn't know where it was coming from but that was before i was detoxed and gluten-free. Have you been through a detox dietary program? I know that when I eat a "safe" gluten-free that ends up not being gluten-free I get severe pain and it starts in the abdomen rib cage area and moves up into shooting pain in my left shoulder. I've been in the ER two separate times and they are CLUELESS!

In Topic: Gastroenterology Psychiatrist?

26 November 2012 - 08:29 PM

Well, my symptoms got better after I detoxed but now they are getting worse and it seems like everything I eat has a negative effect. i am meeting with a specialist and having a colonoscopy this week as i have been having severe pain around my colon and other problems (sparing you the details). I would love to see things get back under control. Some days it is hard to keep pushing myself through my responsibilities. But I am going to keep fighting and hope for some help!

In Topic: Not Sure I Can Do Much More Of This...:(

26 November 2012 - 08:16 PM

As if I don't struggle enough with adjusting to this lifestyle and trying to figure this out (2 weeks out), today was a disaster for me. I, honestly, am ready to give this up because it causes too much grief for others, as well.

We always go to mom's on Thanksgiving and she is very "Type A" about life, in general, and doesn't really pay attention to details and doesn't always remember things I say, etc because her mind is always running a mile a minute.

With trying to be tactful, a few days ago, I asked about the ham and turkey she was planning on having. They are gluten-free. She said potatoes and vegtables, as well...and those gluten-free. I would bring my own gluten-free bread and desert (and choke it down since I don't care for it, as it is...)so i thought we were great.

The only thing gluten free was the ham. The potatoes were some special potatoes that were full of gluten. So as I am trying to hold back tears and find alternatives, my step-father procedes to swear at me as if I am just being "picky" and on some "fad" diet.

I was in awe. I was very upset. Needless to say, even when he "apologized" it was in a loud, insincere way, and I'm probably more hurt than I've ever been in my life. It upset my kids and made my husband frustrated......

And I just can't do much more of this. I still haven't found any gluten-free foods that I actually like but also am not sure how I can live solely on basic meat and vegtables ((I'm insulin resistance so I really have to watch the fruits and, honestly, the carbs, anyway)).

I am unsure how to balance both conditions without starving...

So while I am sitting here, foodless, I am watching everyone else eat pies and ice cream cakes, I'm wondering if this is really worth it. To just avoid a potential "higher risk" of lymphoma and the like? I still sleep numerous hours and a chef I spoke with yesterday told me it took him 6 years to heal.

I'm 40 years old. I want to LIVE my life....not live it frustrated and upset and constantly being ridiculed.

I just don't know how to do it otherwise.

Anyone successfully find happiness with this? I'm failing miserably at it.

I completely understand and that is one of the main reasons I didn't go home for Thanksgiving because although family really tries to understand they can't and aren't educated about Celiac so it makes it really hard. Each day is a new chance to fight again and try to make positive changes and headway. There are ok days and there are really bad days so I'm always thankful for the night to get up and push through and fight another new day through. Thanks for sharing what we are all feeling and face each and every day with friends and family and co-workers who really are trying but it's hard.

Remember that gluten-free items aren't going to take the place of our favorites but when you realize that doing without is not a better option it does grow on you and you can manage. I have been trying different gluten free pastas and haven't really found one that I love however the rice noodles are the best I have found yet. Rice Chex have been a life saver for the crunch and the breakfast option with rice milk, which again isn't great, but better than doing without. I'm thinking of finding a nutritionist that can help put me on a better food journey than I've been on for almost a year now. I'm thankful to find your post and this great support group.

In Topic: Not Sure I Can Do Much More Of This...:(

26 November 2012 - 08:08 PM

"Anyone successfully find happiness with this? I'm failing miserably at it."

Like others, have mentioned it will take time to adjust (I'm still adjusting). It's a pain, yes. Not meaning to impose my beliefs on you and I don't know where you stand with regards to faith. But honestly for me, because of my relationship with Jesus Christ, I can still choose joy, even with this dumb disease. I've come to the conclusion that without Him, this life is just not worth living. He's the only reason I can live to face tomorrow, along with all of the challenges living with celiac presents (and that's a lot!). Message me if you'd like to hear more - I would love to share.

WOW! Not only am I thankful to hear from you and welcoming me here, but to hear you share your faith without shame. How refreshing...I couldn't agree more about the hope we have through Christ even when it doesn't seem worth fighting anymore. HE makes it possible. One of my favorite verses is, Psalm 18:32 It is God that girdeth me with strength and maketh my way perfect. Very appropriate based on what you posted. Thanks. There also a song, "Because He Lives I can face tomorrow" your post reminded me of that song. Thankful!!!!

In Topic: Gastroenterology Psychiatrist?

26 November 2012 - 08:02 PM

Dang, I did not know that such an occupation even existed! But welcome, by the way, although I am pretty much a newbie here too. :)

I'd sure like to hear if others have experience good/bad with that type of therapy.... I feel a bit skeptical because it seems "It's in your head," is the most common thing some doctors say. Not ruling it out though, but like you, I'd just like to hear from someone who went through this.

I certainly sympathize with you ((hugs)), my doctor has just more or less given up on my continuing problems after deciding gluten was the cause. And of course many people in this forum tell me that it can take 1-2 years to heal, so I'm working on being patient!

How long has it been since your diagnosis?

Yes, well my Gastroenterologists recommended this doctor because she was a Gastroenterologists and then went back to school to become a Gastro Psychiatrist because she is so convinced of the connection of brain and gut and knowing that it doesn't mean it's all "in your head". She truly understands it's NOT and that's why I'm praying that she can help me steer me in a better direction. I was unofficially diagnosed a year ago, but even though my blood tests just recently came back normal it is so evident that I am a celiac. I've been gluten free for almost a year now and just can't seem to get a step forward! I will keep you posted on how it goes and whether it will be beneficial to look into for other celiacs. Thanks for your {{hugs}} - they are much appreciated right now as I need other celiacs to help me get through this really hard place right now. It's amazing to me that doctor's don't know what to do with celiac. I know Jennifer Esposito (Jennifer's Way.org) has a specialist doctor that she sees regularly in NY for her treatment for Sever Celiac. There have got to be more Celiac specialist out there and we just need to find them. I also considering a Nutritionist to help me with my eating because I'm allergic to so much and lately everything I eat makes me feel badly. Here's hoping for relief for us both!!!

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