Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Update To My Story
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,633
    • Total Posts
      921,524
  • Topics

  • Posts

    • I found my gas issues were caused by carbs, and sugars, something about how the bacteria in my gut changed and started making me gassy and extremely bloated when they got a hold of any thing more then a tbsp of grains, beans, fruit, or starch carbs. And no amount of medicine helped. Changed to 1/4 servings of those and mostly protein, fat diet. As for vitamin supplements I found I have to take B vitamin supplements 3 times a day to not go zombie mode. I personally found Liquid Vitamins Energy & Stress and the Nero-logic from them helps along with the occasional 1/2 bottle of 5 hour. As to carbonated water I avoided it when bloated cause it made me feel worse.
    • Butterbean, do go have a read of the dermatitis herpetiformis section.  See if anyone's story sound familiar to what you're experiencing.
    • Hi all. Well, it's been around twenty days since I've been taking Gas-X like meds (with simethicone), but no relief. Maybe I should drink bigger dose... Currently, I'm taking 80 mg four times per day.
      I'm so exhausted, both mentally and physically... Anyway, I have two questions:
      First, is it good or bad to drink mineral/carbonated water if you have severe trapped gas like me?
      Second: Is it possible to regain some physical strength/relieve fatigue with vitamin supplements? Thanks in advance.
    • I have had so many issues with my teeth--I keep getting decay and I have had filling after filling.  This past week, my dentist told me I may need a crown, which is pricey. I also have two missing teeth, which was a genetic thing that runs in my family. I am sick of hygienists telling me I am not doing enough brushing, flossing rinsing.  I do all three religiously (can't even imagine how bad my mouth would be if I didn't...)  Thankfully, last time I had my teeth cleaned, the hygienist said that my mouth was the cleanest one she had seen in years. And, she said, "something happened to your teeth developmentally." I explained how I had undiagnosed celiac disease many years. I am only 31... It is really disheartening.   What do you guys do to afford all this dental care?  My insurance doesn't cover a whole lot.  Thankfully, my dentist has felt bad and gives me discounts here and there.
    • I have been recently diagnosed with celiac. It causes terrible attacks that start with ear ringing (?) Anyway, I too, cannot eat Budding's lunch meat. I have discovered that it causes a gluten reaction. I did not realize it until the third time eating it as I am vegetarian. But as I literally can eat almost nothing now, I was craving "real food". I ate this lunch meat thinking it was safe and voila! Celiac attack. Swollen, painful ankle, ringing ears, itching mouth, nausea, anxiety, going to the bathroom way too much, etc...I also cannot toletare corn starch so, that might be it? So, I agree, I definitely cannot eat that nor can I tolerate 20 ppm. I empathize with all of you. Looks like potatoes and tea, at least till I learn to cook.  :-p
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,636
    • Most Online
      3,093

    Newest Member
    LelaAmelia
    Joined