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Just Diagnosed Today...need Advice.....? Please Help!

Krystle56

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ShayFL Enthusiast
ShayFL
Posted

It may be hard to get all traces of gluten out of that bread machine and pasta maker if used even once before. :( Clean...clean...clean and clean again. Maybe you will get lucky. Gluten is insidious......So if you make bread or pasta with them and get symptoms of "glutening" dont use them again.

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Krystle56 Newbie
Krystle56
Posted
  • Author

I think we used the bread machine once and never used the pasta maker so I'm going to make sure and wash out the bread machine really well prior. Like soak everything and then wash it and then soak it/wash it again.

Good news......I'm getting to see the GI specialist sooner.......as in this Friday!! I am so relieved. It was a bad feeling thinking I'd have to wait nearly 2 months.

The current clinic said something like "your test showed that you have celiac. With 9 being you have it, you scored an 18"....or something like that......does this make sense to anyone????!!!!!!!!! I mean I know I have it, otherwise I wouldn't be feeling so much better after just under a week of gluten free....but is that a normal way to tell someone something like that? I'm so confused. It makes me feel like I'm off the charts!

Amber M Explorer
Amber M
Posted
I think we used the bread machine once and never used the pasta maker so I'm going to make sure and wash out the bread machine really well prior. Like soak everything and then wash it and then soak it/wash it again.

Good news......I'm getting to see the GI specialist sooner.......as in this Friday!! I am so relieved. It was a bad feeling thinking I'd have to wait nearly 2 months.

The current clinic said something like "your test showed that you have celiac. With 9 being you have it, you scored an 18"....or something like that......does this make sense to anyone????!!!!!!!!! I mean I know I have it, otherwise I wouldn't be feeling so much better after just under a week of gluten free....but is that a normal way to tell someone something like that? I'm so confused. It makes me feel like I'm off the charts!

I personally haven't heard it put like that, but I am fairly new to this too. It seems like they made it sound like "no big deal." Obviously, they don't know much about it. One doctor I went to once a few months ago said, "Why bother to spend the money on tests (I have insurance), just stop eating it, and we'll call it Celiacs." And further said, "the only way you can tell is with a colonoscopy anyway." I had already read a multitude of medical stuff and I knew she was "DUMB." She is the same one who told me that I had a "thickened Hymen", when in reality, it turned out to be a prolaspsed bladder! DUMB! We don't want to believe doctors can be stupid, but some times they really are! How did they get through medical school anyway? I haven't found a good celiac doctor yet except my allergist. Still looking.(MD) My dentist is a celiac! At least he can help the tooth sensitivity!

Glad your going on Friday, I think you need attention now! Good luck, let us know.

Krystle56 Newbie
Krystle56
Posted
  • Author

I don't even know what test it was that told them I had celiac....I had so many tests it's hard to tell! I was assuming a blood test but maybe I'm wrong.

lizard00 Enthusiast
lizard00
Posted

It was more than likely the tTg test- that stands for tissue transglutaminase. It's a blood test. The test is pretty specific to Celiac. If that specific test comes back elevated, it's usually pretty indicative of Celiac Disease. Did they say anything about doing an endoscopy?

bjn12670 Rookie
bjn12670
Posted

Hi Krystle, my name is Becki and Iwas also just diagnosed on Friday to be exact. I am not even sure if I am posting to the forum correctly. I have a lot to learn about this disease and this website. Anyways.... I know exactly how you feel and I too, am so overwhelmed. This site has been great and I am looking forward to learning more through all the experts on this site. I guess we will learn together. Best of luck and hang in there.

quote name='Krystle56' date='Nov 4 2008, 06:18 PM' post='481656']

Hi everyone :)

My name is Krystle, I was just diagnosed with celiac today. After being shocked, I was upset, and now I'm thankful that I know what is. The problem is, I don't meet with the dietician until next Thursday and I need some help with what foods I can/can't have....what to shop for, etc. I'll tell you a little about me, I'm 22, I'm a college student, and I live with my boyfriend. We probably don't eat as healthy as we should so this is going to be good for the both of us. (I don't expect him to make any life changes but he's agreed to try new foods with me, along with seeing the dietician). The thing with being in college is, I like to grab something quickly in the morning and bring it to school with me for lunch, because I'm on campus all day between class and work. Cooking and baking are two of my favorite things to do, so I am really willing to try new things. I've been searching the web for pages with gluten free recipes and there are so many....I don't know which are good and which are bad!

I don't really know anyone else with celiac (or else I do and just don't know they have celiac)....so I think this is going to be a great resource for me! I'm trying to stay positive so this will be helpful I think :)

Thanks in advance!

ang1e0251 Contributor
ang1e0251
Posted

Hi to both new members. I just wanted to tell you if you don't want to mess with the breads much in the beginning, you don't have to. If the flours are hard for you to find it could be a pain for awhile. I just used corn tortillas in the beginning and I liked them so well I don't make much bread even though I have a machine. I toast tortillas with butter to eat with eggs, you can roll sandwich fixings in them, for your grilled cheese, I make quesadillas; spread tortillas with butter then brown in the skillet with cheese in the middle.m.m.m... I make mini pizzas on the tortillas. I toast them first so they're a little stiffer.

I like apples with peanut butter and rice krispy squares only make them with gluten-free Rice Chex. Just dive in and start cooking! It's not as hard as it seems and you'll get the hang of it fast. You are a smart college girl!!

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
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      By rei.b · Posted

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