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Gluten Sensitivity/Celiac Disease

I am currentlly on my second round of tests for this.  I have been having abdominal/stomach pains for about four months now.  I am in pain, in so much pain it makes me cry.

They are also testing my calcium levels and B12 levels along with a bunch of other things, they just keeping taking so much blood!

I have an appointment with a Gastro Doctor, but not until the middle of August.  

 I went to dinner last night at Bandanas and had my usual (Ame knows it), but I had a potato, baked beans and bread, OMG, I sooooooooo paid for it last night!


So, my question is, is anyone else dealing with this?  How do you do it or deal with it? 

Re: Gluten Sensitivity/Celiac Disease

  • YUCK...I got tested for this last year. I didn't end up having it but I have TRIED to cut down on things of that sort, buying "tapioca" buns from Dierbergs for turkey burgers and all that.

     I would guess that it sounds likely that you have at least a sensitivity since you had SO much starch last night. Your usual is kind of a carb-fest. But a damn fine and delicious one, so knowing me, Id probably pay for it once in a while ;)

     
    Keep me posted on this.
     

  • Hi there. Crash linked me to your post.

    Do you have any experience with this, or is it totally out of left field? 

    image
  • Well anyway, I'm not sure if you're still on but I'll answer as though you are totally new to it.

    Getting diagnosed is weird, scary and confusing. Looking into your cupboard the day you get home from receiving your diagnosis can be a whole new kind of scary (especially if, like me, you had never even heard of this before you were diagnosed).

    Shopping is easier now, because of mandatory allergen labeling, but it still might take you a really long time at first. Manufacturers are no longer allowed to "hide" wheat under innocent sounding names like "food starch" (which, btw, is almost always potato or corn). Ingredients like barley and rye are not mandatory, but they are unusual enough that they are almost always listed. You want to watch out for "malt flavoring". It could be rice, it could be barley. If you find something like that and aren't sure, just call the company or visit the website.

    I caution you against buying bread at the grocery store. 99% of it is horrific, and it's also expensive. Whole foods is an exception, but only their stuff. RUN AWAY from anything that looks like it could survive a nuclear war. The best bread is going to be either homemade or from a mix. Might not hurt to invest in a good bread machine. Pamela's Amazing Bread mix is really, really good. Stays soft and is not crumbly. In fact, I heartily recommend any of Pamela's mixes.

    Pasta is easy. There is a brand called Tinkyada, it is the best. Don't even waste your money on other stuff. It tastes almost like the real thing, my DH doesn't complain about it at all.

    Baked goods are not going to be the same. If you expect them to be the same, you are going to be miserable. Go into it with an open mind, knowing that it won't be just like what you're used to, but you might like it anyway. Over time, you really adapt. There are several products that I tried initially and hated, but now I like because my tastes have adapted. There are a lot of good things out there, both packaged and mixes.

    Cereal is also pretty easy. Lots of brands in the health food section are marked "gf". Nature's Path and Envirokids make several types, and there are a lot of others. Regular Rice Chex are now gf, also.

    Get used to eating a lot of produce, rice and potatoes. I've learned to just eat things without bread or buns (like sandwich things, brats, etc) because it's just easier.

    Soy sauce was one thing that I was worried about, but there is a really good one called San-J wheat free tamari. I couldn't live without soy sauce.

    The less processed a food is, the better the odds that it will be ok for you. 

    Eating out is really the tricky part. I recommend getting a dining card (google "triumph dining cards"). I tried to just explain it at first, but had a lot of bad experiences. People take it much more seriously when you've got it in writing. There are actually quite a few places out there with gf menus, such as PF Changs and Outback. Google "gf restaurants in ____" and you'll usually find at least a few places that will be ok.

     Really, it will be ok. It can be pretty rough at first, but you'll be a pro in less than 2 months. I guarantee it.

    image
  • Thank you so much Rock this really puts my mind at ease!
  • Ok, this may very well be celiac or a gluten issue, but have you been checked for gall stones?  I had them - worse pain in my life.  I was in the ER 3 times.  It wasn't really any specific food that set off the attacks, so if this is something that is sudden (last 4 months) and not something you've been dealing with your whole life, I just wanted to say its possible it could be gall stones.  My pain was basically right at the bottom of my rib cage, top of my stomach.  Just a thought.  Hope you get it resolved though!  Good luck to you.
  • Rebecca, why haven't you informed me about all this. I swear girl, I find out everything on here. Stick out tongue I will be emailng you tonight.
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