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  1. If someone got so drunk that they had to call into work once or twice a month for a hang-over, wouldn't you tell them to figure out how to stop that?


    I hardly think that getting drunk can be equated to accidental glutening. No one chooses to be glutened.


    A lot of this has to do with lifestyle, and again no one can judge someone else from the point of view of their own lifestyle. People who live in the country miles away from the nearest town are less likely to be run over by a bus than someone living in the city. It's the same with celiac disease. Some people can stay home, cook each meal from scratch, and be 100% in charge of their lives. Other people have spouses and kids who aren't as careful with gluten around the house and jobs that require frequent lunch meetings. Every person has challenges, but each person has different challenges. It isn't about making excuses, not being responsible, lacking intelligence, or being a wuss.

  2. I have a follow-up appointment with my doctor in a few weeks. She doesn't know much about celiac, so every time I see her I bring a few little factoids that I've picked up (mainly from this site) and some articles from Medline. At first I thought she would be offended by this, but she actually appreciates it. The fact that she's willing to learn and listen to me makes her a better doc than any of the previous ones.


    Before cutting out gluten I had intense sinus pain and TMJ. She sent me for CAT scans, which can back negative. I also had my wisdom teeth removed in case that would help, and it didn't. She's a bit dubious about the sinus pain/TMJ link to celiac, but aside from explaining to her that other people have the same symptoms, I'm not sure exactly why.


    Does anyone know the technical reason why celiac causes these kinds of facial pain?



  3. My GI doc said, "You have made my day just by how good you look and feel compared to last time I saw you." The last time she spoke of when I looked so bad was pre-endoscopy and pre gluten free. She made my day by saying that!


    Love it! I have a follow up with my doc in a few weeks. I'm almost at the one-year mark and am interested to see what she says. She said she noticed a difference at my last appointment a few months ago, but I feel even better now. I had no idea I could ever feel this good again.

  4. Thank you for the information. I'm feeling pretty miserable today. I ate really well yesterday. However, last night, my daughter made baked potatoes and asked if I wanted half of one. I thought potatoes were okay so said yes. However, I'm not sure what she put on them because within an hour, I was bloated, in pain and my rash is spreading today. I'm tempted to just live on fruits and water for a few days. I'm scared of eating anymore. 


    Missy - have you already eliminated gluten from your diet? It's possible that you could have false-negatives on your tests if you aren't eating gluten, and the doctor may advise you to start eating gluten again before having any tests done. But wait and talk to the doctor first - my doc advised me not to go back on gluten because it made me so sick, and looked at other evidence to diagnose celiac.


    Since potato made you react, have you looked into the possibility of a reaction to nightshades? Nightshade sensitivity has a lot of the same symptoms of celiac, and the two can exist together.

  5. Bartful - I'm sure there is some good advice in Gemini's posts, but I'm having a hard time seeing beyond the "suck it up" and "stop whining" comments. Comments like that are not necessary - ever - and they set the stage for everything else she says. In an in-person celiac support group she probably would have been asked to leave after saying those unkind things.


    From Gemini's posts it seems that every celiac who eats out is making a bad decision, unless they go to trusted restaurants. But when you get glutened at a trusted restaurant, was that really a bad decision? No one chooses to be glutened, and sometimes we have no control over it at all. Just yesterday my husband dipped some pita bread into a jar of hummus we were sharing instead of putting some on his plate first. Luckily I caught it and stopped eating the hummus, but it didn't register for him until after I said something. We can't control what the people around us do, and that isn't our bad decision making. It's just life.

  6. Gemini, you make assumptions about other people, and then follow them up with rude comments. How is it compassionate to call people "whiners"? How is that constructive or helping people in any way?


    For your information, the last two times I was glutened were at restaurants that advertise as being gluten-free and places where I had eaten safely many many times before. There is NO way to predict that this will happen. You apparently have a lifestyle that allows you to prepare food at home three meals a day every single day, but not all of us have that luxury. That's what I mean about lacking common sense - not everyone can live the same way. You CANNOT base every single person on this forum from your own perspective. People need help and guidance to adjust their life to this disease. The LAST thing anyone needs is to be shot down and called names when coming here for support.

  7. Despite what people say, you have a good attitude towards celiac and life in general. There are many things worse than ceilac, the fact that we can make ourselves healthy with only a diet change is a luxury most diseases dont have. Some people will always find a way to make excuses.


    It's not only a diet change, though. It's an entire lifestyle change, and that means practice, education, and making mistakes. Gemini is criticizing people for making mistakes, while admitting making them him(her?)self. It's hypocritical. Most of our doctors don't have a clue about celiac, and so people should not be slammed for asking basic questions. I always thought of this forum as a place of support and a place to share experiences - not a place where I'm told to suck it up and stop whining.


    Honestly, if Gemini has this lifestyle down, and doesn't need any help or support, and has no compassion for fellow celiacs, why is he/she even here?

  8. Also, just because you had one good experience at a restaurant, doesn't mean every experience there will be the same. Never let your guard down, even in seemingly safe restaurants that you trust.


    I'd been going to this great pizza place.They have delicious and inexpensive gluten-free pizzas, and I never had a reaction...until last week. One more place to scratch off the list :(

  9. Some Indian sauces have gluten in them, especially if the restaurant uses pre-packaged sauce.


    My workplace has an Indian restaurant, and they buy-in the sauces, but the company that makes the sauce labels the safe ones as gluten-free. It's about 50/50 for their sauces.


    (Thankfully the end-product is created in a clean environment, so I've never been glutened there.)

  10. A lot of restaurants are labeling themselves "gluten-free friendly" on sites like Urbanspoon to cash in on the gluten-free craze and get more customers in the door. I went through the list of gluten-free friendly restaurants on that site (it's a separate category if you've never looked at it), and was shocked by the number of restaurants that I know aren't gluten-free friendly at all. There were a couple of Italian restaurants on the list that I wasn't familiar with, but I went through their menu and there wasn't a single gluten-free option offered, nor was there a note on their websites about how to order something without gluten. Just a scam.

  11. Did your doctor test you for the wheat allergy? It's a pretty straightforward test. It seems odd that your doc would do bloodwork to search for celiac, but not do the proper bloodwork for the allergy. You don't have to be eating wheat to have the allergy test.


    And I don't agree that celiac has been ruled out. Just because you're not in a position to have the tests done doesn't mean you don't have it. Did your doc look at other bloodwork, like vitamin levels, for other signs of malabsorption? There are more ways to assume celiac without the traditional celiac blood test and biopsy.

  12. I had an appointment with a gastroenterologist yesterday in the hope of getting closer to a diagnosis


    Just as an FYI, even gastroenterologists aren't always very knowledgeable about celiac. When I was DX'd my doctor, who was admittedly clueless about the disease, called a gastroenterologist to find out more. He didn't know any more than she did. I had also seen gastroenterologists previously before being DX'd, and they never even suggested a food-related cause.


    My point is - whatever the gastro tells you, take with a grain of salt and do research on your own. My doctor had years of blood test results sitting in front on her and never made a connection to celiac - it took me 5 minutes on Google to put all the pieces together.


    Being off gluten for as long as you have means that your results will probably be negative, and you may not be given a diagnosis. My doctor diagnosed me as celiac without the tests because of how well I reacted to the diet and evidence from other blood work, but I'm not sure if the NHS is that flexible.

  13. " If I can heal this well and live a normal life and show up for work everyday,

    most people should be able to do so too."


    You realize that you're making rather baseless presumptions that everyone's like you, right? Those same assumptions that make our friends, family, co-workers, etc, think we were/are just 'being lazy' when we're actually sick?


    Completely agree. When I have bad brainfog I don't even feel safe driving. I can leave my turn signal on, briefly forget which pedal is brake and which is excelerate, and forget to look up at stop lights. It's way safer to stay home in bed on days like that.

  14. The whites of my eyes are brighter, and my eyelids are no longer puffy, which makes me look alert and awake. I've had lots of people comment about how refreshed and vibrant I look now.


    My vision has also improved since going gluten free. I couldn't read the descriptions on Netflix before, and now they're very clear. Vision goes blurry again aftert a glutening though.

  15. Have you been glutened recently? I was glutened twice in the last month, and even though most of the symptoms have gone away some still linger. Anxiety is still present, although mild, and I can't sleep more than a few hours at a time. It's gradually getting better though.


    The brain & neurological related symptoms always last longer than the other physical symptoms for me, and many others.