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


Krystle56

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ShayFL Enthusiast

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

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
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

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

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

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

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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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