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Update To My Story


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#1 maggiesimpson

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Posted 01 January 2013 - 02:06 PM

It's been a little while since I've posted here. I have been completely exhausted and still going through testing and stuff. Finally have a diagnosis. Sort of. He said this is what I have, but I think he may have just been looking for a quick answer. Crohn's is one of the big digestive problems they treat. For all I know it could be something similar. I just hope my future isn't as full of as many complications and surgeries as most crohn's patients.
My husband and I are a little skeptical because I don't fit the description as well as we would expect, and we think the doc may have just looked for a common disease without being sure. That sure makes things easier for him. We are both afraid of what is to come if it is indeed crohn's. The folks over at the crohn's forum have been absolutely amazing! Just like here. :D Anyway, looking for a new GI doc because I don't feel I'm connecting with him. I asked for nutrient testing and he blew it off. I don't know. Maybe I'm expecting too much to think by now a physician would have wanted to see if I'm absorbing nutrients from my food. Thought that would be one of the first things checked when going through testing for a digestive problem.


Also, I had previously posted about an unsupportive spouse. Things have improved alot! He is finally growing up and realizing he can't be like a grown kid anymore. I think his mom's visit a few months ago really helped, too. He now thinks about US instead of HIMSELF when he plans things and looks to the future. As for the gluten free stuff, he is much much better about it now. He still rolls his eyes when I talk about certain cross contamination issues, but understands it for the most part. Otherwise he asks me about what I can and can't eat. He still complains that it's hard to make things for me to eat because I'm so restricted, but then he tells his family that it's actually really easy. What a turd. I try to stick to a whole foods diet, with a lot of room for improvement. :rolleyes: We can go out to eat, and he doesn't roll his eyes when I ask for a gluten-free menu. He also lets me pick the restaurant, so I know that I can safely eat. And, a big surprise- he leaves generous tips because of them making sure my food is safe. He has always been a poor tipper. There are still some areas in need of improvement, but it has come a long way. Maybe we will even get to the point soon where we can start a family. I have the itch, horribly. Have had it for a few years. I'm 33 and don't want to wait too long, but if things aren't right with us, then kids have to wait. Simple as that.

Hope everyone had a great New Years! I surprisingly made it past midnight. Usually I am asleep by nine on the nights I don't work. Just a tired girl. :P
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Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

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#2 mushroom

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Posted 01 January 2013 - 02:16 PM

On what did he base his diagnosis of Crohn's disease?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 maggiesimpson

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Posted 01 January 2013 - 05:16 PM

On what did he base his diagnosis of Crohn's disease?

Biopsies from colon/endoscopy and pillcam results. None of my bloodwork is positive for typical crohn's, though. I have no inflammatory markers, and my sedimentation rate or whatever that was is normal. Biopsies and pillcam showed chronic inflammation that the physician could not visibly see through the camera. And images of the small intestine showed multiple apthous ulcers with the majority of them being in the ileum, one of my most painful areas. And all this time I thought that pain was appendectomy scar tissue. My other painful area is pretty much a line going across around the belly button.

I have no bloodwork supporting anything. All tests run have come back normal- celiac (they never ran a full panel, too late now), crohn's, metabolic panel, and kidney. The only tests I have ever had out of normal range in my life have been thyroid related, with the exception of borderline low glucose (fasting and non-fasting).
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Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

#4 1desperateladysaved

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Posted 01 January 2013 - 05:44 PM

Thanks for the update. I hope you get your situation understood and helped. I am thinking of seeing some kind of Celiac Expert, but it would have to be someone with a natural bend. My chiropractor has really helped me with supplements and testing. That is Ann Zilka DC. She is located in Richfield, Mn.

A doctor in Mankato has helped my son. He is Osteopathic. The clinic is Between the Bridges Healing Center. His name is Jeff Kotulski. His title is Osteopathic doctor. My son had damage of the small intestine from parasites and Dr. Jeff was able to help him. One of the things I liked the best was our last meeting. He got really excited to see the improvement in my son! I need a female doctor, or I would enlist his help with me.

I want a specialist since I currently have no objective way of tracking progress and would go in to attempt to get one.

I love children, so I can relate to desiring them.

Diana
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#5 gatita

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Posted 02 January 2013 - 09:13 AM

Oh my goodness that must be frustrating. I don't know much about crohn's but understand that gluten can be a problem for may crohn's sufferers, too, so perhaps going gluten-free would help that too? I wish you had a clearer diagnosis, but it's great that the crohn's forum people are so supportive -- like here.

I'm also glad your man is getting on board and hope he continues in that direction!
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Diagnosed with wheat hates me 4/13



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