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How Many Of Your Gi Doctors Were Willing?
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34 posts in this topic

My regular doctor thought that I had "cyclic vomiting", something that's related to migraines (and there's a history of migraines in my family). However, he still recommended that I see a GI doctor to be sure it wasn't something else....wow, I am glad that I listened to him.

The GI ran bloodtests to check for allergies and a variety of other things. I also had a sonogram thingy done and a bone density test. Bloodtests showed that I had celiac disease, but no allergies. My bone density test showed that my bones weren't as "mature" or something as they should've been -- 1-2 yrs. behind, I think. He did the biopsy to be sure...and said that I had celiac disease....so he found it really well.

He was terriffic in finding it, but I think that now he isn't that helpful....I'm going back to him for "check-ups" on the celiac disease.....but he seems to think that I am saying that everything is because of celiac disease....he thinks that symptoms like diarrhea, cramping, vomiting, etc. are not related to celiac disease and it annoys me since I know that it is -- symptoms don't always, and don't usually, leave in under 5 months :angry: ! He thinks that I'm just attributing everything to Celiac.... <_<

Helpful to diagnose, but not to cope.....

-celiac3270

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celiac3270, are you supposed to have a second biopsy to check on your gluten-free progress? My daughter, who is 11, is supposed to have another one 6-8 months after being gluten-free. I know you've still been having problems on occasion, and that you aren't allergic to anything, and that you are meticulous about not ingesting gluten. Just wondering what your thoughts are on this.

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I've been....about 5 months, I guess and the doc. hasn't talked of another biopsy...I've heard of that, but I think that my doctor's going to stick with monitoring it by blood test....

I've heard of that, so I think it's just a matter of what the individual and their doctor feel is right. Some doctors might feel it necessary to do a biopsy, but mine, I think, feels that monitoring it with blood is suitable...for now, anyway

-celiac3270

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Oh, well that's good that you and your doctor have it worked out. I know my daughter had a fair amount of damage--NO symptoms--and this doc routinely runs a second biopsy. She sailed through the first one, so we're not concerned about the second...I never thought I'd hear myself say THAT! I enjoy your posts--you know so much I have to remind myself you're a kid! Actually, I think you're a grownup trapped in a kid's body...

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All these stories are kind of scary. I went to my internist who seems to dismiss my feelings that I might have celiac. However did write me a referral to a GI but wrote on it "Colitis". I have done some research and although there is some similiarities in symptoms I did tell him I have a brother with Celiac and my syptoms seem somewhat textbook for Celiac not Colitis- I am in an HMO so I am hoping for the best when I go to GI- I was gluten-free for about 5 weeks and then went back after finding that I had to be on gluten to be tested- sure enough I have been feeling sick ever since- August 5(my appt date) can't come soon enough for me.

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My doctor actually lied to me and told me he took "several" biopsies during my endo.....he actually only took one! I'd like to find somebody who specializes in celiac or one who is more inclined to accept it!!

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I just saw a new GI because I wasn't happy with the one I had. The first GI never did an endoscopy, or a biopsy. GI number two says that the blood test that the first one did was such a poor test that htey don't even use it anymore. So, he's not sure that I have Celiac's. In my first office visit, he was gave me a more thorough exam than number one ever did. He's going to try me on a slice of toast in the morning, prior to an endoscopy four weeks from now. It's such a pleasure to have a GI who communicates with me, and seems to know what to look for, and cares about me! I wasn't familiar enough with celiac disease prior to being diagnosed, to know what tests to ask for. I don't even know what blood tests I had. Even after my diagnosis (which I had to call the doctor to get), he didn't discuss the condition with me, other than to refer me to a dietician. I'm so glad my PCP referred me to this doctor! This group of gastroenterologists seem to be very familiar with celiac disease. Even before I was referred to them, I found them on the Internet. through a celiac-related website. :D

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I, too, saw a doctor of middle-eastern descent and was diagnosed on my second visit -- he scheduled the edoscopy right away and I had a diagnosis within 2 weeks. Yes, I am lucky and thankful, too.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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