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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About MEH

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    1. MEH added a post in a topic Observations We Can All Relate To...   

      OMG...You made me laugh. Love the part about two confused drunks.... I so get what you mean. For some reason, whenever I ate pizza I'd get really bad gluten brain fog. It was always worse with pizza for some reason. I remember once I was driving home from work, I was supposed to meet someone at an intersection to drop off paperwork and I just whizzed by. I was having enough trouble getting home, much less remembering an errand I had just promised to run five minutes before on the phone.

      When it got really bad for me, though, was a day I was sitting on the couch and I literally was so brain fogged that I could barely think. I was beyond functioning normally at that point, and I couldn't see my way through the next moment. It was as bad at that moment as it had ever been--and still not knowing why was terrifying. At one point in my life, I sort of got used to the idea that I would die young and would do so never knowing why. What a horrible thing to have to think. This is the point some of us get to in this disease--before diagnosis--and it's truly, truly sad.

      I often wonder how many people are out there going crazy at this very minute and not even knowing why. And that something as simple as throwing away a loaf of bread might save them.

      As great as it is to have the brain fog behind me, I do feel so sad for all the people in the world who are experiencing it right now and have no idea why....
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    2. MEH added a post in a topic Observations We Can All Relate To...   

      I do have UDI's bread..but I don't know. There's something un-bready about it. I hate to sound like a whiner, but think back to those peanut butter and jelly sandwiches with that soft white bread that tasted almost like cotton Sunbeam bread. That's the only time that I miss wheat the most. Or a hotdog bun---a seriously good hotdog bun. I realize now that some things just aren't as good without the bread----that the bread was a big part of why it tasted the way it did.

      And yes, I know what you mean about the brain fog. I remember one day last winter I was so brain fogged I really gave rise to the thought that I was losing my mind. It was horrible. I'd give up peanut butter and jelly not to feel that way again!
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    3. MEH added a topic in Celiac Disease - Coping With   

      Observations We Can All Relate To...
      It does get better.

      The first day I realized that what was actually making me sick for 48 years was "wheat" I had several leading emotions: Mad that I was diagnosed with MS rather than celiac. Sad that I had been sick my whole life and thus probably lived a less exceptional life than I could have. And then a wave of relief. I couldn't believe all I had to do was to cut something out of my diet and I would be free! It isn't quite that easy, unfortunately. Giving up wheat for good is a hard thing to do...but it does get better.

      Thank god for gluten free pancake mix! If I had to eat one more bowl of Corn Chex for breakfast, I think I would have stopped getting out of bed.

      Grocery stores are getting better. My grocer has agreed to stock a few more things for me. Gluten awareness is really growing, but we have a long way to go.

      I usually get glutened when I'm not thinking. This new awareness takes time to develop. I was making a regular cake the other day, and without thinking, took a lick of the batter as I'd been doing for 48 years. Or, I popped a wheat cracker in my mouth as I was making a cheese tray. Those things we used to do "automatically" are the often the last things to go on a gluten free diet. I have to remember to stop and think before I eat---

      Food is harder to find. I'm an international tour director who often eats out three meals a day....I have to search hard for food I can eat which takes up time and energy---that I often don't have.

      I realize now that my body often gave up wheat voluntarily---as if it had a secret wisdom. I seemed to avoid wheat on some level before I even knew I was a celiac. So, giving up wheat wasn't that hard for me. What do I miss the most? Hotdog buns. (Real ones). And I miss eating without having to read a label first.

      I laugh now when I think of how many waitresses I've made go into the back to bring out a big tub of salad dressing or some other food type so I could read the label. The new normal is sometimes ridiculous--but humurous.

      It's been absolutely amazing to me that for the first time in my life, I no longer have acid reflux. It's wonderful to drink orange juice and lemonade again! I've been able to add a few things to my diet rather than avoid them. There are some blessings!

      I run into all kinds of people who are celiacs now. It's fun to compare notes.

      Gluten free beer is really good. I think it tastes better than regular beer. It's widely available too, which shows you how much better the marketplace is getting.

      I'm sorry..but I've yet to find a piece of bread that comes close to regular bread. I've given up sandwiches.

      I'm not eating as much..which really isn't good for me. You go through this confusing time in which you're not sure what to eat, and you haven't established a regular routine. This is that "in between" time and it isn't easy. You just have to keep working your way through it.

      My kids like some of my gluten free food, which I have to shoo them away from. Too expensive to share! But they're cute. They often bring home products they find for me to try.

      I live in a coastal town and I miss fried clams. And clam chowder. I'm trying to make some of our local restaurants aware that it's just as easy to use corn starch as a thickener as it is flour.

      I have days now where I feel like a "regluar" person...plenty of energy and I can go all day for the first time in my life.

      I was mad at my Mom for a few weeks for not acting on some of my symptoms when I was young. (Delayed period, very thin, fatigue, heartburn by the age of 8, etc.) But I realize it would have been impossible back then to have cornered this..... Still---I struggled at school, and had a lot of other problems that could have been easily fixed.

      I'm already pinpointing other people in my family who probably suffer from this and don't know it. I'm amazed at the lackluster reaction I get when I share my diagnosis with them. A celiac soon realizes how un-interesting their condition is to everyone else.

      I realize my tolerance to alcohol has changed...and my immune system seems a little sluggish as I transition to a new normal.

      I hope some of you are nodding your heads as your read this..

      Please add some of your own observations...
      • 13 replies
    4. MEH added a post in a topic Gluten Making Me Uproot Myself   

      A few thoughts, fellow travel mate.

      I am very stubborn. I try to make life work for me. Captian of my ship. Squarely at the wheel. Not going to let a little thing like gluten interfere with my life, right?

      But I'm coming around to seeing, as you have, how difficult it is to live a gluten free life. Maybe I'm not in charge after all. Not in this round, anyway.

      Having said that, please don't give up your life in Columbia if you really love it that much. Have things shipped in. Budget a package that your mother sends you every month full of good products. Befriend a local butcher, baker, candlestick maker----whomever you need to talk to and see if you can't recruit the right people to make it work. I know how hard it is to be abroad and try to eat gluten-free. Trust me, I know. But it's not impossible---not if your life really works for you where you are. Be creative in your problem solving.

      Maybe you've already tried this...and if so... I'll hang up my flag. I am thinking of leaving my travel job for the same reason, but I have a whole lot less control over my environment than you do---as I travel all over, from one place to another quite a bit. If you really can't make it work, then there's no way out, except to move.

      But do it when there is no other alternative left open to you. That way, when you move, you won't have any regrets.
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    5. MEH added a post in a topic What's Your Job   

      Love that idea!
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    6. MEH added a post in a topic Celiac And Now Ms   

      I hope I'm not too late in replying.

      I was diagnosed with MS ten years ago. It's such a long and complex story..but I was pretty sick for many years and had all the symptoms of MS. I was actually on one of the very expensive medications they use to treat MS. I was a big advocate for MS, all the while feeling as though that wasn't the entire story.

      What you need to do is go right to Amazon and order the Swank book on MS. Swank was neurologist who believed gluten intolerance had a lot to do with MS. It's called "The Swank Diet" and some people with MS have really healed following his guidelines to a T.

      I think I've come to realize that I am really probably just a celiac that never knew, as I can trace these problems to childhood. The MS type symptoms started when I was in my late 20's, but I'm wondering if it was just this wheat thing getting worse.

      The first few weeks that I gave up wheat and grains I really felt like a new person, so I urge you continue on this path---no matter what your final diagnosis.

      Good luck. Keep in touch...
      • 1
    7. MEH added a post in a topic Why Does Gluten Cause Headaches?   

      This is one of my big reactions to gluten. I get a bad migraine, and I can feel the places on my scalp that are sensitive and hurting. I went my whole life without getting headaches, and now it seems like a big part of my life.

      I read that it has to do with the blood brain barrier.

      Google that.

      I'll try to find out more info on it too.
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    8. MEH added a post in a topic Overwhelmed.   

      Thanks everyone for your wonderful responses, becuase I'm really hurting today.

      I ate bread yesterday (as I said in my post) to test the waters and what a mistake that was. But since I've never been tested medically, it was a good confirmation for me.

      I can't eat bread.

      It makes my head ache terribly. I get reflux again and I get depressed and moody. I get tired and brain fogged and sick.

      I get it now.

      I guess this "confirmation" was really more than I was prepared to handle today.

      Thank you so MUCH for making it better....

      thank you..thank you...thank you....
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    9. MEH added a post in a topic What's Your Job   

      Well, funny you should ask that, as I will probably have to give up my job. I am an international tour director and trying to stay gluten free while on the road is just hellish.

      Try telling someone in Arabic that you can't have gluten and you'll see what I mean. Try ending up at some shack on the side of the road in Guatemala for a basic lunch and expecting them to accomodate your "allergy." No one in Central America knows what a food allergy is.

      So, yes.

      I'll probably have to give up my job.

      At 48, I am going to have to begin a whole new career with four kids in college. Good timing, universe!

      To say that I am pissed off and miserable about all of this is not saying enough.

      I'm feeling sorry for myself today.

      Maybe it'll pass in a few days, when the bread I ate yesterday leaves my system and I am on better ground.

      I cheated yesterday just to see what would happen....and it isn't pretty. But I guess I have a right to complain. I love my job but don't think I can keep it anymore...
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    10. MEH added a post in a topic Overwhelmed.   

      Thanks for your replies.

      Because I am sitting here with tears streaming down my face. And it's not about the bread. It's about the confusion. How did I get this? When did I get this? Why did I get this?

      Does anyone remember having these feelings at first? Just this pure confusion and anger and hunger?

      Has anyone traveled after diagnosis? How hard was it to walk by a bakery in Paris? Or refuse a souvlaki in Greece? Or a fresh loaf of bread at the corner bakery anywhere? I never even ate that much bread or wheat, to be honest, but the truth is.....if I want a piece of bread one day, I can't have it.

      Does that seem at all ridiculous to anyone but me?
      • 0
    11. MEH added a topic in Celiac Disease - Coping With   

      It's been two months since I stopped eating gluten. (I think I am either a celiac or gluten intolerant since birth for a thousand reasons).

      It wasn't so hard to give up gluten at first, because I felt instantly better. No more migraines, bathroom issues, acid reflux, bladder problems--and I actually got a period again after two years! I could drink organge juice for the first time in my life, and I had energy for a full day! I stopped waking up as if I had the flu everyday. My asthma improved--and so did my seasonal allergies. It was a revelation. I think it was too late for some problems to improve--like neurological issues and memory difficulties, but I tried to see the cup as half full.

      But after the intial glory I felt, my emotions started to level off. It's really hard to stay gluten free, no matter my research and devotion. I travel internationally for a living, which makes it almost impossible to stay 100 percent gluten free. Inevitably, I get glutened.

      And then I started to resent having to be gluten free at all. I'd think of my upcoming trip to Italy---how excited I was to eat pasta and bread and all of the wonderful things that country has to offer. I go grocery shopping and feel absolutely overwhelmed by the constant reading of labels, the 90% of things I can no longer have, how ridiculous it seems to me that I will never ever eat a croissant warm from a baker's oven, or the beautiful Kava bread filled with feta cheese and carefully rolled up with sliced olives. Bread is fundamental to life. Amber waves of grain! and all of that. America's bread basket! This is just ridiculous, I thought! I will never ever have an ice cream cone again? For the rest of my life? Seriously? Or a fish fry?

      I mean----to say never, ever, again is such a huge thing. It's like what an alcoholic must feel about giving up drinking, I suppose. You just can't picture NEVER ever again. And what a completely ridiculous thing to be allergic to! Wheat?! Really? Not bee stings, or the avoidable peanut---but wheat?

      Then I started to doubt it. I wasn't tested after all. Yeah, I felt better, but maybe it was a fluke! Maybe I'm just gluten intolerant and can have wheat once in a while. Hmm...I'm just going to test this one time.

      And so I did.

      On the way home from a family trip yesterday---all starving, all tired, all ornery--we stopped somewhere and I bravely ordered a burger....with a bun. Within two hours, the migraine returned, I had brain fog, and my night sweats resurfaced---while I was watching TV on the couch! I didn't feel well at all.

      I got the message. And it came as a huge shock. Because if you haven't been medically tested--and you test yourself in this way----you experience the reality of it all over again.... as in.... "Wow...this is really true. This is really happening. You are somehow allergic to wheat."

      And I'm mad. I'm so mad I can't even describe it. I'm mad no one ever figured it out. I'm mad I suffered so much for so long when I didn't have to. I'm mad that my Dad died at 65--because he, too, had so many allergies and I'm wondering if gluten was behind so much of his misery and his early death. I loved that remarkable man.

      And I'm mad at God for making me this way. I've had enough hurdles to jump over in this lifetime....and so...what? God thought he'd throw gluten into the mix for a laugh?

      Why me? This just seems so ridiculous to me---because I have already suffered enough. For God sakes, we all have enough emotional turmoil in one lifetime, methinks, without having to be allergic to wheat as a comic afterthough while I was being born.
      I am so mad right now that I can't even explain it in real words. It's sadness and anger and depression and purely unadulterated confusion mixed into one.

      And I don't know where to go from here? Get tested and feel like crap for two months so my test results come out accurately? Honestly, I don't have time for that. I have four kids in college and I'm working and I just don't have time to feel like crap for two months.

      Just not eat gluten because I was lucky enough to figure out why I was literally dying (or so it felt like) at the ripe old age of 48? Yes, that makes sense but it's hard and I'm so tired of everyone telling me "well, just don't eat gluten" like it's some easy thing. I'm so afraid to eat confused about what I can eat and can't eat...and so mad about the whole thing in between being hungry...and I'm absolutely miserable.

      All anyone ever talks about is the "food" in regards to gluten-istas...but what about the emotions?

      I need help.

      Dietician. Counselor. And a miracle or two.

      Tell me how you figured this all out.

      I'd really appreciate it.
      • 16 replies
    12. MEH added a topic in Celiac Disease - Coping With   

      Chicken Broth----And Another Question....
      I got glutened tonight from chicken broth. This month has been so hard, trying to figure out what to eat. I travel for a living, was in Central America for three weeks, and it has been interesting navigating this new way of life when I have to eat out every night.

      I'm home now and made soup and looked at the ingredients on the box. I checked on line to see if the broth I was using had said it didn't.

      Is chicken broth tricky?

      Also: If I eat gluten, within an hour a very bad headache starts and gets worse as time goes on.

      Does anyone else experience it this way?
      • 4 replies
    13. MEH added a topic in Celiac Disease - Coping With   

      Dry Eyes, Too?
      For the first time ever today, I was able to wear contacts without wanting to rip them off of my eyeballs! So, a gluten free diet, (I understand by doing a little research), helps dry eyes, too?!

      Am I going to turn into Julia Roberts tomorrow? Do the benefits ever stop?! There are things happening to my body that I didn't even think would happen. The dry eyes thing is a bonus! I hate wearing my glasses all of the time.

      Question about testing:

      Is there anyway for me to tell if I am a celiac vs. a sensitive? Are there certain clues--certain symptoms that seem to lean towards one vs. the other?

      Should I get testing done? Are there benefits to knowing for sure, or is just feeling like a human being for two days in a row enough?

      Also, does one just keep feeling better and better the longer they remain gluten free? Will I feel even better two or three months for now?

      And how bad are my "ooops, I ate gluten" moments? Getting the hang of this is hard.

      Thanks for your patience!
      • 4 replies
    14. MEH added a post in a topic Brain Fog And Seeming Dementia....   

      I'm so glad you wrote because I have had many of the same symptoms--especially the headache.

      I'd get the pain on the sides of my head--near the top at scalp level--and when I touched those spots they were sore! I had those headaches daily for a while--once for a whole week. They're better now, but after being gluten free for three weeks, I occassionally get them. And sometimes, very quickly after eating gluten by mistake.

      I can also relate to the fuzzy brain thing----mine was so bad over the years, it's a wonder I'm not dead! Especially combined with fatigue---I'd have some very bad days. My memory is still fuzzy, but the brain fog---the kind that was so bad you'd wonder why the whole room wasn't foggy too--has improved, although not completely resolved.

      Remember too, that you are eating differently now, and I notice I am probably not eating perfectly well, which can also cause foggy thinking. Give yourself time to adjust. I know how scary it can be, so remember this is a process. It will take time to figure it all out, to get on the right path, and figure out what else may need to be done down the road or eliminated.

      I'm here for you if you have any more questions!
      • 1
    15. MEH added a post in a topic Night Sweats?   

      I've had night sweats for ten years!

      I thought I must have had the earliest and longest menopause in history!

      I've been (trying to be) gluten free for almost three weeks, and come to think of it, I haven't had any night sweats since then.

      Gosh, everyday, I connect one more dot!

      I am sleeping better, too. I used to wake up once or twice during the night and couldn't get back to sleep...
      • 1

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