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Ohhh Jeeze My Friend
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6 posts in this topic

 Funny lil story , a friend of mine called me yesterday and asked if I wanted to come over for a beer. I told her a couple weeks ago I could not drink beer (she forgot), I told her I could have a drink and that I would bring it. So as we are sitting there talking she asked me about Celiac , I told her again what it was and stuff, She said ohh so after you heal you can have a beer? I said no I can never have a beer (unless Gluten Free) I said this is a diet changing disease and I have got to stay on it forever. By george I think she was going to cry! I said don't worry it is a easy diet. Just eat fresh stuff!! No worries!! She said but what are the Drs. doing about it? I said they don't do anything about it, I do. She said I hope I don't get it , that would be horrible. I said it is not horrible unless I eat Gluten ... I just got a kick out of it so had to share :) 

It may take her a while to wrap her head around it , I wrote it down so she could look it up :) 

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I've had several situations like this. I was diagnosed very quickly and when people would ask me what the symptoms of celiac disease are I'd say, "Well, unexplained weight loss is one..." and then I'd look down at myself and say, "Um... I didn't get that one! "

 

Another time I was pressured to buy something from a bake sale. I said to the lady, "Would you believe there is not one thing here I can eat?" We had a short conversation about celiac disease and she said, "You poor thing!! What on earth do you eat??" Again, I looked down and said, "Um... do I LOOK like I'm starving?"

 

ha ha ha

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Awee yea I was losing weight , I think I have stabilized now, but my other friend does say she better not ever get Celiac because she would just die!! My other friend actually tell me " I cannot believe the Dr's tell you not to eat something and you just don't eat it" I said " Well it's either that or die from malabsorption"  no worries!! :) 

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Yeah, when people say to me that they couldn't live without eating wheat I tell them I would rather be a Celiac without wheat than to have Lupus, which is where I was headed before going gluten free. 

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Absolutely where my doc kept looking was for was Lupus. There are alot of things I could think of that is worse than Celiac .. I'd much rather have this ,than any of the devastating diseases that there is out there! If I can control with diet , ohh heck yea!! Thank you!! :) 

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    • I thought I would update you all.  I started to eat gluten shortly after this post.  I was miserable by the time I had my EGD.  The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia.  I had abnormal mucosa of the whole stomach and severe inflammation.  The biopsy results came back today, they stated early stages celiac disease.  I wonder what it would've shown if I wasn't on a gluten free diet for two years?  My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages....  WTH!  I've really got to find a doctor that specializes in Celiac Disease...    
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    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
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