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40 Comments

  1. 1

    Julie

    I love that movie, and that’s my favorite line! Very true. :)

    Reply
    1. 1.1

      The Gluten Dude

      Ain’t it just the best movie. Great characters. Great dialogue. Great story. You don’t need guns and sex to make a great movie.

      Reply
  2. 2

    J

    Agreed. You will make mistakes and that’s ok. We aren’t perfect. I have made my share of mistakes. You learn to cope, learn from your mistakes and move on. All you can do is learn and live your life. Sounds like its easier said then done but we’ve all been through it. Whether it is gluten or life. Trust me I know. I’ve had and have life obstacles and have a list of food intolerances that include gluten and dairy.

    Have your time to safely grieve and/or let all your frustrations out. Once that is done you make a plan and you go for it. You can do it. I know it may seem like darkness now but you will soon see the light once you deal with your feelings and make a plan. You must be flexible and adapt to what life throws at you. Most importantly know that you’re not alone and that our paths although sometimes rough will lead us to the light.

    This has helped me a lot. Hope it helps you. Take care.

    Reply
  3. 3

    Linda

    Sometimes I wonder if anxiety and worry causes more sickness than the actual disease. Learning to control anxiety and worry can go a long way to improve quality of life no matter what challenge you are facing.

    I would rather cautiously optimistically life and accept that some days I won’t feel great. but, who does feel great 100% of time. i am learning everyone has some health issue to deal with.

    Enjoy life.

    Reply
  4. 4

    The Atomic Mom

    I would say, be as prepared as you can be to explain things to people who do not understand food allergies. Be prepared to advocate for yourself to your family and friends, and if they do not listen or want to show compassion then time for new friends. I realize you have to keep your family, so stand firm with them. But, yes, get busy living. Learn as much as you can about your disease and food allergies and then live your live accordingly. Good luck … give us an update in 6 months!

    Reply
  5. 5

    Donna

    Amen to that GD!!!

    Reply
  6. 6

    BlueWillow

    All of my friends know that we can only eat at a restaurant with a gluten free menu. I always take a sandwich with me just in case I get the feeling that the restaurant can’t meet my needs since I’m also very sensitive to cross contamination. When I go to my friends’ homes, I almost always take my own food because I don’t expect them to wipe down their kitchens like it is Passover just so a crumb of gluten won’t get in the food. Your friends will get used to it as long as you don’t spend the whole evening talking about celiac. Just be prepared, relax, and enjoy life.

    If you are still getting really sick frequently even though you’re following a strict gluten free diet, you may want to try a grain free, dairy free diet as well. Once I did that, I felt much better. Fortunately, I can eat rice, but with other grains, my body reacts like I’ve eaten gluten.

    Reply
  7. 7

    Truthfully Gluten Free

    They’re not the best friends if they don’t understand your new life.

    I’m also not ashamed of bringing my own food to parties or friend’s houses to feel like I fit in. I bring gf pizza, my own cookies, etc. That being said, you don’t ALWAYS need to fit in. There have been countless times where I sit there watching everyone eating a slice of birthday cake and I have nothing. It’s a part of life. Nothing to be ashamed about.

    Reply
  8. 8

    Alissa

    First off, just breathe. I know, it seems totally overwhelming and depressing and scary, but there are ways to navigate. There are days when I would give *anything* just to feel normal. But you can still be careful and in full control of your food, and still live life.
    If you aren’t ready to eat in a restaurant yet, there are tons of other ways to be social – movies, bowling, game nights – the list is long. As a culture we have made eating such a social activity, and being different such a stigma. Find something you enjoy to do that is not food- related and do it as often as you can. YOU ARE MORE THAN YOUR DISEASE. When it takes up your every thought, it only creates more anxiety. Get yourself an arsenal of “safe” foods together. Learn to bake gluten-free and share those treats with friends and family. Turn your control of your diet into a strength, not a weakness. When you do mess up – and I say when, not if – don’t be too hard on yourself. If you still aren’t feeling better, find a doctor who will LISTEN to you to find out if there are other issues at play.
    And when you need to vent, find a great community like this one full of people who get it.

    Good luck:)

    Reply
    1. 8.1

      Andrea

      YES!
      You can go out with friends any number of places without eating.
      At his age, I would imagine bars are probably an option as well. Beer is of course off limits, but there is wine or mixed drinks, and there’s always soda pop for those that can handle it.
      He could host an event and prepare naturally GF foods to show friends (and himself) that being celiac doesn’t condemn you to a boring life spent all alone eating crappy stuff or being sick.
      As the Dude and Dufresne say, get busy living or busy dying!

      Reply
  9. 9

    Connie

    It seems funny, right? You find the cure for being sick, and then become compulsive about not getting sick…which makes you sicker.

    Your anxiety is probably making things worse, so I would start by working on that. Try something small. Have a Kind Bar and a Starbucks latte. Work your way up to trying a restaurant meal.

    Then, I would work on being present. Mindful meditation is really helpful for me to help put things in perspective about this. It might help you as well. Work on accepting that things will go wrong occasionally, but your good fight will be a win most of the time.

    I also keep gf cupcakes in the freezer, and bring one with me when I know I will be in a troublesome situation. ;-)

    And some weeks, I just lose it and get tired of being the advocate, and I end up with a lunch of peanut butter cups, potato chips, and a diet soda. I’ve stopped beating myself up over it, and as a result, I find I do get sick less often.

    Hang in there! We’re all in this together, and we can make a community out support out of the Intertubes :-) – regardless of what little support we have around us.

    Reply
    1. 9.1

      Linda

      I absolutely love the cupcake idea. And, you made me laugh with the reese cups & potato chip lunch. hee hee.

      I was happy to see UTZ Potato Chips clearly labels its products as Gluten Free.

      Reply
  10. 10

    Lou (not Louisa)

    I think if you are that sensitive and you can’t trust the person cooking (for whatever reason) don’t eat it! Bring your own food! Bring something substantial to share that you can eat like twice baked potatoes or pasta salad. Get yours first or even easier on your anxiety, bring a serving separate. Find out what they are serving and bring something similiar you can microwave or bring in a cooler (they can be used to keep food hot).

    Eat before you go to the restauraunt. Just have a drink. With no food to hold you back, you can circulate around and talk to everyone (if you want to).

    Not being able to eat is a great excuse to get out of something you don’t want to go to. It gets you out of eating Great Aunt Ethel’s god-awful fruitcake. See, there is a benefit!

    Reply
  11. 11

    Jersey Girl

    We have all been there. It is stressful going out to restaurants worrying that you will be poisoned inadvertantly by some idiot non GF’er. However if you let that fear take over you will lose the ability to live your life the way you want to live it. Sounds to me that there is another underlying food allergy maybe. Try eliminating one type of food for a few weeks and see how your body reacts. Exercise releases endorphins=happy :) As for the job situation, well that might take some time. Know that your medical information is confidential so think about whether or not to reveal that to prospective employers. And you know, you don’t have to work at home, you could find something close that maybe isn’t in your field. Something that make you happy. This is your life. Take it back.
    ____________________
    “Dear Red, If you’re reading this, you’ve gotten out. And if you’ve come this far, maybe you’re willing to come a little further. You remember the name of the town, don’t you? I could use a good man to help me get my project on wheels. I’ll keep an eye out for you and the chessboard ready. Remember, Red. Hope is a good thing, maybe the best of things and no good thing ever dies. I will be hoping that this letter finds you, and finds you well. Your friend, Andy.”

    Reply
    1. 11.1

      The Gluten Dude

      Will you marry me?

      Reply
      1. 11.1.1

        Jersey Girl

        “There’s a big hayfield up near Buxton…One in particular. It’s got a long rock wall, a big oak tree at the north end. It’s like something out of a Robert Frost poem. It’s where I asked my wife to marry me. We went there for a picnic and made love under that oak and I asked and she said yes. Promise me, Red. If you ever get out, find that spot. In the base of that wall, you’ll find a rock that has no earthly business in a Maine hayfield. A piece of black, volcanic glass. There’s something buried under it I want you to have.”
        Andy Dufresne

        Reply
        1. 11.1.1.1

          The Gluten Dude

          “You know what the Mexicans say about the Pacific? They say it has no memory. That’s where I’d like to finish out my life, Red. A warm place with no memory.”

          Reply
  12. 12

    Linda

    I just went to my Celiac specialiston Monday. He told me Lactose malasportion and Dairy introlerance frequently go hand in hand with Celiac Disease while the gut is compromised. Once the gut heals, you can reintroduce lactose. He also told me just because you go Gluten Free doesn’t mean your stomach is magically healed. It takes time and other food intolerances can be adding fuel to an already burning fire. So, I going to the allergist t have more food allergy testings in the next few weeks. As of this week, I am on an elilmination/clease diet for a few weeks.

    I love going out to eat. I won’t give that up. But, generally i choose places I know are more GF included. For example, i go seafood restaurants and stick with straight up seafood and veggies or places with Gluten free menus.

    Reply
  13. 13

    Jen M.

    Regular kid food and pet food are both very high in gluten. Just being around them (chicken nuggets, pizza, mac n cheese, Purina, etc) makes me very sick. Our dog has to be 100% GF, or I’m hurtin. You might look into some other part-time options, like retail that doesn’t bake anything on premises (airborne gluten is a problem, trust me. I wish it weren’t true, and that I was just paranoid). Google it—there have been studies. That means that your home should really be GF, too. I know that you don’t want to inconvenience your parents, but if you explain that this will help you get better and become independent, they should be willing to go GF at home for a while. You don’t have to stop living. But you DO have to start living differently. The way I look at it is that a few more restrictions in some areas remove restrictions in other areas because I feel better.

    A few other things that are helping me:

    Extra sleep at night
    Safe, non-contaminated vitamin supplements
    Stress management
    Minimal processed foods
    GF toiletries

    I’m looking to freelance/work from home right now, too. But I’m not going to rule out a desk job or additional schooling to change careers into healthcare where I can manage my own environment or control the gluten I come into contact with.

    Hang in there. Please dont get discouraged. We’re all right there with ya in the celiac community so youre not alone. Hope this helps!! :)

    Reply
  14. 14

    IrishHeart

    I agree with the Dude, Alissa and the others and I will offer this:

    Do NOT let this disease define you or confine you.

    Stressing out about something that “may” or “could” happen–is a huge waste of time & energy and will make you sicker than you need to be. Stress = inflammation. Worrying is a useless activity.

    No celiac should be fearful of food, eating out, socializing or engaging in living life fully. Will we get “burned” from time to time? Oh, you betcha. This is life, it’s the hand we were dealt, but it does not mean we curl up in a cocoon and stop living. Okay, sweetie? :)

    Take your food with you. No one will care. They want YOUR COMPANY. Invite them to your house, too —and serve up some GF goodies. I just had a dinner party here last Friday for visiting relatives. They dined on a feast and no one missed any crappy old wheat bread. The next night, we went to another cousin’s house. I brought my own food and one of them asked if she could have some of my twice baked potatoes. :) I also brought a GF carrot cake with cream cheese frosting —which they devoured.

    I could have stayed home, feeling sorry for myself that I could not eat what she was serving OR I could go, have some wine and eat what I brought. No one was offended or thought it “weird” that I did this. They know what celiac is and they know what it did to me and they are just glad I am alive.

    Your level of anxiety may come, in part, from vitamin deficiencies. Have your levels (D, B-12, folate) been checked recently? (it can make us feel this way when they are low) Thyroid dysfunction can create a feeling of anxiety too. Also, many celiacs feel a sense of loss and depression after diagnosis. This is understandable, but really, we have to come to grips with it –and move on. It’s sucky, but it’s not the worst AI disease we could have.

    Something is NOT right- if after 3 years, you are “very frequently ill”.
    IMHO As a young celiac, you should have rebounded by now.

    I suspect you do not feel well because something else may be at play. I do not know your home situation, but if you are getting consistently CCed, but that will keep you feeling poorly. Please, go ask you doctor to run some blood panels and see if something is low or if your TTG antibodies are high. If you have reintroduced dairy and you have bowel issues still, ask him for a lactose intolerance test.

    Most celiacs are re-scoped in a few years. He may need to take a look and see what’s going on.

    Hon, you’re young and you have your whole life ahead of you!!
    Get control of your fears now. Learn to cook a wide variety of foods. Take a small cooler bag and some snacks/sammies with you wherever you go.

    Go OUT and have fun! :)

    and do what CONNIE says: have emergency CUPCAKES on hand!!

    I never met a cupcake I didn’t like and no one feels sad eating one.

    Hope this helps!

    Reply
  15. 15

    Holly

    I am very sensitive too. I have Celiac and am unable to eat dairy, soy, nightshade vegetables, or ANY GRAINS at all. I would suggest eating a very simple diet without grains and dairy until you feel better. I have only been able to eat at 3 restaurants without getting ill and one is a gluten free restaurant. My social life has been hampered as well. I do have some portable food that I take to some restaurants so I can eat with friends. I always tell them that going out to dinner is about the company and not the food. It does take strong friends and you are young. When I get sick, it is torture and takes around 2 weeks to resolve. That makes it very difficult to take a risk. I have personally determined that it is not worth the risk for the most part. My daughter who has Celiac is only sick for about a day. If that were the case for me, I would be much more likely to experiment. If I were you I would look at the GIG web site and find some restaurants and call the manager before going. I would try to get a couple that you are safe at for special occasions. Also, check out meetup.com and the GIG for you local gluten free and Paleo groups and meet those people. Many colleges also have groups and if you live near one, check it out. Whole Foods and Central Market also sometimes offer classes and seminars on gluten free cooking. For those who are extremely reactive, it might be nice to have some friends in the same boat. You might also check out some meetup and local groups that do things that are not food related. Good luck!

    Reply
  16. 16

    Aloha Julie

    You can survive celiac disease and enjoy life.

    I don’t eat out anymore. Don’t get me wrong, it does not mean I won’t go to the rest. I will join my friends, I eat before I go or I bring my own food. I went to a meeting the other day, and someone had bought banana bread from the local market, I passed the container around 2 different times, and when I got home I was in the bathroom with gut pain and the big “D” word. No, I did not eat the banana bread, next time I know to get up and wash my hands. Just things like that exasperate me. Diagnosed in March. I’m still optimistic though, this is a learning process, and I do not want to be defined by my celiac disease. Only ya’ll know this happened, I did not even tell my husband. No reason to worry him about it. It was just a few hours of discomfort. (If I had ingested the bread, I’d be in the hospital, just to clarify.)

    You have to take control of your health and what you put into your mouth. I won’t let anyone cook anything for me, except my husband. And yes, I do have to cook more than I would like, but it is worth it.

    If you are so paranoid that it is effecting your life, you may benefit by going to a support group. GD is correct, no matter how hard you try, you are going to get “hit” on occasion, it is just what we have to deal with, but at least we know what is making us sick, and we are doing the best we can to stay well.

    When I get frustrated, upset, feeling lonely about having celiac disease, I try and think of others that have something way more debilitating. It could be worse.

    Take some classes on line, you might find employment doing book keeping, editing, data entry or call center jobs, just to name a few. A friend of mine is a computer programer/software designer, he does his job from home.

    A friend of mine has a grandson with celiac, he is in college, traveled to Europe this past summer, he was diagnosed when a little kid, he does not let celiac stand in his way of anything. Most of his friends are vegan, he lives in a house with a bunch of guys. His father has celiac, his brother does not…and I admire this kid, he handles having celiac better than his dad. It is up to you to take control and live life fully, you have many years ahead of you. You can change your attitude, and become more positive.

    Good luck.

    Reply
    1. 16.1

      IrishHeart

      I have to add:

      Both Jules and I are very sensitive to CC and we both have been burned by restaurants or some other thing we felt was “safe” (and then ranted to each other about it on the phone and on email) LOL

      We have symptoms for weeks that make us pretty angry
      and we hate it, but we agree that it will not get in the way of us having fun.

      Once a “Whoohoo Girl”, always a Whoohoo Girl–Celiac or not.

      Life is for living and sometimes getting your butt kicked on the field, not watching from the sidelines.

      :)

      Reply
  17. 17

    Berni

    I find a steady diet of denial, hope and sheer dumb luck has gotten me through the last few years! And it works (most of the time). It’s a horrible feeling I know – never knowing who’s going to poison you next, but you just gotta grab life by the balls (if you’ll pretend the expression)and be brave! Otherwise you’ll turn in to crazy hermit! Although, don’t get me wrong, I don’t take risks when it comes to food. I just mean that we all get our down days, I often feel like staying in bed and eating wheat, gluten & dairy free cake until I’m a 4-lane highway! But like everyone had said -don’t let the disease control you, just have to find the resolve to power through! (But it’s still ok to occasionally stay in bed watching Disney films and eating “kosher” cake)

    Reply
    1. 17.1

      IrishHeart

      “grab life by the balls”

      oh, heck ya!!!!!!!—and thank you, Berni!! :)

      Reply
      1. 17.1.1

        Aloha Julie

        I could say something else about “b” grabbing, but not sure if it would be appropriate b/c of the dudettes. But yes I agree! run with them forever free!

        :-)

        Reply
        1. 17.1.1.1

          IrishHeart

          well, that’s why I am glad Berni said it FIRST :)

          because I was “thinkin it”

          I still feel bad about saying “blows” on here so long ago ..:( …but once and for all: I meant it this way: celiac blows…as in “stinks”— as in “causes Havoc” —and “turbulence”.

          to this day, I did not know the controversy it would cause.

          (I mean, honest!! my 85- year- old Mom said it was okay for me to say it because of what it did to me )

          Reply
          1. 17.1.1.1.1

            Aloha Julie

            I know that was weird, it is just another expression, like you said, “it stinks.”

            Have a question, does anyone get a racing and skipping heart from gluten?

            Reply
            1. IrishHeart

              oh yes!!! wicked heart palps (jump through your chest heart thumps).

              I wore a holter monitor 6 times through the years…and was in the ER having an EKG, several times.

              It was/is not a cardiac problem. It was gluten/celiac.

              If I am CCed, I am up all night with a “dancing heart” and insomnia.
              yuck

              Reply
              1. Traci

                I get heart palpations from gluten as well. It’s scary until you realize it is just a symptom of glutening….actually it is still a bit scary.

                Reply
              2. Aloha Julie

                ok, good to hear others have had this, only b/c that means its just not me! don’t get me wrong, I do not wish this on anyone. I got the pounding heart, the day after I touched the banana bread container, my gut pain had subsided, so it surprised me, I have had the crazy heart bit before though, and went to ER, several times over the years, the latest my BP was 182/113, and I was told I was having a panic attack.

                In 07 I was diagnosed with left bundle branch block, “LBBB” and there is no doubt in my mind this came from 25 years (at that time) of undiagnosed celiac. I feel the LBBB, my heart skips a long beat, I have had some other strange heart symptoms recently, so going to cardiologist on the 8th, will wear a halter for 24 hours then an echo-cardiogram just to make sure all is ok. No alcohol for awhile to rule that out as a possible cause. :-( but it is really scary and if alcohol is causing it, forget about it, I’ll go run to get my high. That of course is if my heart is ok. Now I am rambling.

                GD, I can’t have a drink with you today, (or is it tomorrow)? sorry!

                Thank you all for responding to my question. IH, when you wore the halter did it show the crazy madness going on in your heart? what did they tell you?

                Ok, got another question, since I have a hypothyroid, (diagnosed in 07 as well), I was put on levothyroxine, generic for synthroid, has anyone read about going on natural thyroid hormones from a compounding pharmacy, rather than taking the synthetic? My dr. told me since it is not regulated by the FDA I should not switch, plus she wasn’t sure if compounding would be GF. I’ve read quite a bit about this on the internet…..but not having a dr. here that knows enough to truly advise, makes it all confusing. (When she told me about “not regulated by the FDA,”) I thought, but the FDA thinks statins are great for the general public, Why should I trust them? If any of you are taking a statin, please make sure you take CoQ10 with it. We need that to live, and statins rob you of it.

                I’ve decided that if I go back to the East Coast next year, I’m going to make an appt. at the Univ. of Maryland Center for Celiac Research.

                These questions and issues I have are the very reason, that when my dr. and other dr’s. have told us to “just go gluten free and you’ll be fine” is B*** S**t, what about all the other crap that is happening to our bodies after gong for years being undiagnosed that won’t go away.

                I sent IH and GD, an article about corn….there have been some studies that the protein in corn can trigger a celiac response. So far, I haven’t had a problem with corn, but the research suggests that eating corn is why we don’t heal, we still have a leaky gut. I personally think this has to be strictly on an individual basis or I would absolutely go nuts thinking I could not eat corn. We make are own tortillas with masa flour, corn bread….on occasion. The bread I buy from a dedicated gluten free facility uses corn starch in the ingredient.

                Now that I’ve probably bored everyone to tears, I will sign off and try to figure out what I am gong to drink at sunset. Pakalolo is popular here, but it is illegal, so is drunk driving, ….hmmmm. maybe not such a good analogy. Lets see, ok I”ll just have some good herbal tea with a xanax. Oh wait, didn’t I just say I was going to run?

                Aloha to all. don’t know what to watch today, Ryder Cup, football, but the ocean looks quite lovely….a good book and the ocean. yes, that’s the ticket.

                Mahalo again for listening, even if you got just half way thru this diatribe.

                Reply
                1. IrishHeart

                  I am sorry you are having this problem now, hon–and I hope you get some answers soon. I can give you some thoughts, for what they are worth.

                  The holter monitor tests always showed the “incidents” as recorded, but they were deemed idiopathic or “possibly” mild A-Fib. No medicine was ever prescribed as my EKG was normal every time–although my BP was a bizarre 80/50. Both of my parents had this same thing but HIGH BP. Mom’s skipping./thudding heart beat has resolved GF, too.

                  Jules,
                  I would make an appt. with Dr. Fasano, as it takes months to get in. Why not book it? You can always cancel later.

                  We discussed the corn issue via email and I will repeat my response here. Corn is no danger to celiacs. I have read all the research on maize. Nothing there to alarm me. IMHO
                  Do people have a problem digesting it? yes.
                  If you suspect a leaky gut, you are taking probiotics, right?–well, they should help. The only other supplement that has been studied as being beneficial for gut healing is L-glutamine. Get the pure form or eat foods high in it.

                  Statins are also thought to increase the risk of diabetes and cause malabsorption of vitamin B-12, Jules –which would cause a deficiency and possibly cause fatigue and heart palps and shortness of breath. Please ask to have your B-12 checked.

                  Most importantly, I do not know how much thyroid medication you are on, but you may well need to TAKE LESS of it now !—because frankly, off gluten, your thyroid antibodies will be lower and your thyroid may be functioning more efficiently and you could very well be having heart palps from taking too much medicine.

                  THIS IS what I went through back in 2008-2010.. They put me on statins, thyroid meds, GERD meds (which also depletes B-12 and folate in the body) etc….and I DID NOT EVEN need them. I was swinging from hypothyroid to hyperthyroid and it caused me the shakes and my heart would skip beats and pound out of my goddamn chest, and I had raging insomnia and anxiety. I was wired for sound –yet the endo NP insisted I should stay on meds. Another doc said I did not need them after I questioned this —and so, I stopped taking them. My TSH has been perfectly normal ever since. It was BS –and all along, it was the celiac. I take no medications whatsoever, although I wish I COULD tolerate a pain med/NSAID to get some relief. :(

                  Make sure you have not gone HYPERthyroid since your diagnosis and being GF. You may need a dosage adjustment, Jules.

                  Hope this helps. Sorry you feel bad :( Makes me feel bad.

                  Reply
                  1. Aloha Julie

                    IH, thanks for your advice and concern. I am a slow thinker b/c this is not the first time I have not put 2 + 2 together. (has nothing to do with the math questions below ), :-)

                    I was prescribed Flovent for my asthma about 2 weeks ago. hmmm, so I stopped it yesterday….but still wondering about my nightly libations. I will start the Flovent again on Weds or Thurs, to see what happens.

                    Still going in on the 8th for 24 hr halter etc.

                    I feel good today, only a few skips, no chest pain. There is some info suggesting Flovent can cause microvascular angina.

                    About the thyroid: I had blood work about 2 weeks ago, made sure I had TSH, plus T3 and T4, and free T4, thyroid is in the normal range, I take 100mcg of levothyroixine. I’d have to go to Oahu to see an endocrinologist. Which is something I am thinking about.

                    I’m not going to mess with the thyroid until I see a specialist.

                    Anyhoo, so far today is a good day!

                    Aloha to all.

                    Reply
                2. linda

                  Hi
                  I have an arrhythmia. I’ve always worn my Halter Monitor for 21 days. My cardiologist said you don’t always see the problem in 24 hours. Sometimes rhythm disturbance happen occasionally and not everyday. Something to discuss with your doc. Also, palpaatations are common for women 30 and over due to fluctuations in hormones perimenopause and then menopause.I’ve never attributed them to gluten. But who knows…once you are gluten free, it can do strange things. Hope you get some answers :-)

                  Reply
  18. 18

    laura

    I was diagnosed 3 months ago. one week after this, i was offered an amazing job as a catering manager.

    I have allergies to ginger, corriander, dill, fennel, anise, coffee, fish (and pet hair, dust and i have hayfever) and i’m anaphylactic to shellfish – so much so that touching a plate with prawns on it causes a rash that doesnt go away for 2 weeks. my boss knows what i am allergic to and understands that if i do have gluten, i will be very unwell and unable to work for a few days. i have my emails on my phone so i can be present for clients.

    its a long weekend in sydney so i am taking the time to bake and freeze so that i can grab a friand or cupcake or brownie or something on my way to work for a 16 hour day.

    my point is – get on with YOUR life!!
    be flexible, adapt, dont trust waitstaff (except the ones that work for me) make yourself happy by finding options.

    if you are not happy, see a doctor. if that doctor is stupid, see another doctor. i’m not saying i dont get upset by all this and have bad days but if you dont start controlling your life and your health, you are going to end up sad, alone and angry at the world. thats no way to live buddy.

    good luck, eat good food and surround yourself with good people.

    Reply
  19. 19

    Hobylouise

    So interested in someone mentioning the heart palpitations. I never related it to celiac. Very interesting. My mother had them too and had all the symptoms of celiac although it was never tested for or diagnosed back then.

    I’ve worn the Holter Monitor too and although the palpitations were
    there no cause was apparent.

    Reply
  20. 20

    Anna

    Since my daughter was a tot she would get sick after eating certain foods. We thought it was the dairy but never thought it could be the wheat/gluten. After her 1st and Second grade teachers contacted us with their concerns over her belly issues I decided to take her to an allergist. He did blood work and determined she had wheat and gluten allergies. Two years later being on the GF diet she is still sick. Within 20 minutes of eating something cross-contaminated she is in bathroom and everything comes up. I took her to GI DR., who was very arrogant, and he said he didn’t feel she is a Celiac because “someone with Celiac’s Disease doesn’t get sick immediately after consuming cross-contaminated food”. He said it’s a gradual affect. Then he also said he didn’t believe in the Blood Test the allergist did and doesn’t feel that my daughter has Wheat/Gluten allergies. When I questioned if he she should go off the diet then since he feels she is not a Celiac nor thinks she has allergies he said, “No”. What? He said the only way to tell for sure if she has Celiac’s or Wheat/Gluten Allergies is to do an endoscopy, but he doens’t want to do it just yet. He wants to put her on Prilosec for a few months. Meanwhile my daughter is suffering when she eats something she’s not supposed to or when she accidentally eats cross-contaminated foods. For instance, she took a rice krispies treat from her Sunday School teacher on Sunday. As soon as she got home she was in the bathroom throwing up. (Sorry to be so graphic.) Anyway, I have talked to several Celiacs that I know and they all say the Dr. is wrong because they usually have a reaction to cross-contaminated foods withing 20 minutes after consumtion. The reason for my comment is to hear from other people with Celiac’s Disease on whether or not they too get sick shortly after eating something cross-contaminated. I don’t know why he won’t do the endoscopy. The edoscopy will show us what’s wrong. Why make her wait a few months and suffer? She is sick of being sick.

    Reply
    1. 20.1

      Aloha Julie

      Anna,

      That GI dr. is wrong: the symptoms can occur quite rapidly.

      Before I knew that cross contamination was a huge issue for me, (I have celiac disease), I was eating out a few days a week. I would order salads to be “safe.” I frequented this little cafe, has a really small kitchen. I would eat the salad, and within 10-15 min, I was rushing to the bathroom. From GD’s blog I learned about the cross-contaminaion issue, I was wracking my brain trying to figure out what was “getting” me.

      Now, I bring my own sandwich to this cafe, and of course have never had an issue. Thankfully, the owner understands and does not mind.

      Please take your daughter to a different GI, this one does not care that she is so sick. If your daughter is off gluten entirely the endoscopy may have a negative result. One dr. confirmed her wheat/gluten allergies. With her symptoms the writing is on the wall, no gluten for this child.

      Good luck.

      Reply
  21. 21

    yourmom

    I feel the answer is very trite. when I get ill, I can’t do anything. I get a mind blowing migraine, the room spins, I feel like my appendix is rupturing. I get severe constipation, other times bloody stool…. I know, gross, but it happens. I had a job for 3 or 4 months and got laid off (unrelated to celiac disease.) Now, 6 months later I’m suffering from health issues from that job… I thought I was living, now I just feel like I’m dying.

    Reply
  22. 22

    Derek

    I have the same issues. I am extremely sensitive and have long term damage that has caused osteoporosis and my liver is impacted when I am glutened. Recovery from a glutening takes a month or more to be completely back to normal. That said, I don’t let it stop me from living. I find dedicated GF restaurants I can go to with family and friends. Other than that, I bring my food with me everywhere I go. You have to grab the bull by the horns and take control and not let it control you.

    Reply

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