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natalie23

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About natalie23

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  1. I was wondering if these were gluten-free or not. Here's the ingredient list. I tried calling but they didn't know either, and they didn't know where they were produced.

    This is the assorted napoleon flavors variety:

    Calcium carbonate, dextrose, sucrose, microcrystalline cellulose, maltodextrin, hydroxy propyl methyl cellulose, magnesium stearate, natural and artificial flavors, cholecalciferol (Vit D), FD&C yellow no. 6 lake, FD&C red no. 40 lake, FD&C blue no. 1 lake, FD&C red no. 3 lake.

    Thanks in advance!


  2. Well, I heard from the doctor (I think I definitely did the right thing!) from his vacation spot. The first call: he took the biopsies, but he doesn't think I have it because there's a lot of false positives from blood work and my symptoms don't match up (?) but he'll try to track them down. The second call: he just called the lab, they got them, they did the testing, will hear soon what they show. The third call: the biopsies show mild-to-moderate damage of sprue, I need to make an appointment with a dietitian, and go on a gluten-free diet.

    So there you have it! Thanks for being here! The advice has been and will be great. It's nice that there are great resources for this!


  3. Hi all!

    Well, I called today as I didn't hear back on Friday. It turns out the doctor who did the EGD and biopsy wont be back in until August 20. I don't know why they couldn't get back to me about this before he left on Saturday, but, well, whatever. Anyway, at some point I should find out what is going on, as soon as he decides to get back to them, and they decide to give me a call. I gave them until Friday to get back to me. If they don't, I will fire him and let my very trustworthy primary care physician know what happened and I'm sure he won't refer another patient to him.

    The staff at his office obviously don't care about me, and I have a feeling that he doesn't either. They scheduled me for a breath test on Wednesday (knowing he's out of town?) but I have canceled that, as I wont know my biopsy results by then. It seems like they want me to go through every procedure possible so that he will make some money before they tell me anything (I have something, or I don't).

    I asked them if there was anyone else I could talk to, like a fellow gastroenterologist who was handling his patients. The woman told me that he wouldn't know anything, and that they have to talk to Boschert first. I am very surprised that a doctor affiliated with a hospital wouldn't assign another physician to his patients while he is out of town for three weeks. My primary care physician, dermatologist, and endocrinologist all do this.

    The woman I talked to developed an attitude issue near the end. I'm sure she was frustrated with my irritability and pure sadness towards this entire situation. I feel like I am not being respected and that they are trying to cover something up, all while not caring how I feel. It's surprising.

    My primary care physician is out of town until the 8th, but I'm going to have a doctor I know call them on Thursday if I haven't heard yet.

    I would be a happy patient if he would call and say, "We screwed up, big time. I apologize and will have the bill taken care of. I think we should schedule another biopsy." Or something like that. But instead, a lot of dishonesty. Fortunately, depending on what happens, my sister works for a local TV station that loves doing stories on the particular hospital I had this done at (they have had a lot of issues) and both of my parents are attorneys.

    I think there is a patient's rights statement that says I have the right to know and understand what is on my medical record. I do believe it is fraud to not do a biopsy and bill me for it, negligence to knock me out to do a biopsy and not do it, and there has to be something illegal about withholding medical information from me.

    *Sigh* Sorry this was a bit of a ramble.


  4. I have nothing helpful to suggest, but just wanted to offer sympathy.

    I'd be madder than a hornet in your shoes, and would consider contacting the health writer of the nearest large newspaper.

    If you want a biopsy, the hospital should do one free of charge, since they screwed up the other one (and dared to bill you for it!!!!! :ph34r: ). You might also contact a malpractice attorney.

    On the other hand, life might be a whole lot easier if you just go off gluten and not have the added stress of another surgical procedure, lawyers, health insurance people, etc.

    True, true. I guess I'll see what next week brings.


  5. Let me start by saying that I am very angry.

    I went in for the Bx on July 17, over two weeks ago. I kept calling my doctor's office for the results -- once a day since Monday. Each day they told me that they would have the doc's medical assistant call me back. She never did. Today I called and said that I wanted to her to call me back so I could know before the weekend. I was quite nervous about the biopsy and it would mean a lot to me if she would call.

    Thirty minutes later, she did. She told me that she didn't know what I was talking about, they didn't do a biopsy.

    :angry:

    On my discharge instructions, it says "Bx of small bowel pending," "call in 7-10 days for biopsy results," "may need to schedule a colonoscopy if biopsy is negative..." Under procedure it says, "EGD/Bx." She said that the EGD looked normal so they didn't do a biopsy. I told her that I had specific instructions for him to do the biopsy because my blood was positive for Celiacs. She said there was no record of it and no pathology report.

    I got the bill from the hospital for the biospy. I called the billing department to ask them how I could find out if the biopsy was actually done and they gave me a number to call for my medical records. I called them and they said they had no record of a biopsy being done and that there was a strange code for pathology.

    So I guess that they did the biopsy but coded it wrong and now it is lost? Or maybe they didn't do one at all because this guy knows nothing about Celiacs and decided to go against my and my primary care physician's wishes.

    The MA told me she would get back to me soon after she talked to the doc. Well, they didn't get back to me today, so it definitely wont hear for another few days, if I ever hear back.

    So what do you all think? Should I just find another doctor or wait a few more weeks/months. I must say I'm not really feeling well...but who knows if my insurance will let me have another (or a) biopsy.

    Sigh.


  6. If you google geographical tongue you can find some pictures of it, but essentially as I experience it, they are "patches" on my tongue. They are often about a centimetre in width and are unusally shaped - look a bit like a map. You can see the outline to the patches because there is usually a white edge to them. They appear all over the tongue and they do heal but new ones appear (in a different spot). Mostly it isn't painful although it can be - I have noticed over the years that raw tomatoes (uncooked) often "strip" my tongue, feeling quite a bit like an ulcer. Sometimes I can feel the pain immediately after eating them.

    I thought up until a few days ago that it was just because tomatoes are acidic. Interestingly I have just discovered that tomatoes are a nightshade food which contain lectin. Gluten also contains lectin. As an experiment I ate an uncooked tomatoe yesterday and paid attention to what happened. I didn't notice any pain in my tongue, but within a couple of hours of eating the tomatoe I noticed stomach pain (which I have had for the last 31 hours now)...

    What I'm trying to find out now is if my symptoms and blood test results reflect an intolerance to lectin rather than gluten (or in addition to)...

    Fascinating! I have had a geographical tongue for a long time! I always attributed it to the acid too (as tomatoes and pineapple would make it flair up). Has a gluten-free diet gotten rid of it for anyone?


  7. Hi!

    My blood tested highly positive for celiacs (IgG and IgA anti-transglutimase) so I went in to have an EGD and biopsy this morning. The GI told me that there were no visual signs of celiac disease and that everything looked healthy. He said that the biopsies would be more accurate though. Did any of you have this happen? Is it less likely that I have celiacs? Because that would be great!

    Anyway, now he wants to do a colonscopy to check for a variety of colon issues that may be causing my diarrhea. I'd like to slow down a little bit and get this out of the way first. ...And I don't want to have a colonscopy.

    I also have type 1 diabetes, if that information is useful.

    Thanks in advance!