Guest Libbyk


Rate this topic

Recommended Posts

Guest Libbyk

Hi all-

I got some sort of contamination (could it be bacon? fresh sliced at an upscale grocery?) yesterday, and never got nauseaus, just the inescapable (for me) reaction of the runs and exhaustion and being really emotional. Nothing is really wrong, I am just a little lonely (all loved ones far away for a couple of weeks) and SO TIRED.

I have been bursting into tears since last night, and when I tried to lift my spirits by going for a run, a walk was all I could manage. I just feel like sucha big, freakin BABY. I have been gluten-free for 5 months now, and on the whole, life is wonderful. But these setbacks are are much more difficult more me emotinally than physically.

Have you found any tricks for keeping your head on straight? All I have figured out so far is to lie low and hide until I don't feel crazy anymore. I could use some ideas on how not to become so damn useless for 1-3 days after getting something...


Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Not a lot... Mostly sticking to a routine, and hopefully, when your family returns, if they're understanding, they can help.

Share this post

Link to post
Share on other sites

Don't get yourself down - everyone has their days! I know I've had mine!

This probably sounds wierd, but when I get down on myself about something, I find that if I do something for someone else, I fell better - maybe it's the shift from thinking about me to thinking about someone else? Not sure really, but I know it works for me.

And if you feel too lousy to get out and DO something for someone, go on-line and help someone here! Or call an old friend, or make something for someone you love while you're stuck at home anyway.

Hope you're having a better day today!

Smile! :D


Share this post

Link to post
Share on other sites

I definitely see a link between moodiness and anxiety in my celiac teen and potassium. She has had trouble maintaining electroltyes for years and just recently was diagnosed celiac. Along with moodiness she gets terrible leg pains. I am not sure if she has trouble absorbing the potassium because of the celiac disease but if I sneak her some exta OJ, cantalope or ohthe potassium rich foods her mood improves.

Can't hurt! Good luck!


Share this post

Link to post
Share on other sites


I think that for many of us, the emotional toll of gluten ingestion is unavoidable. A woman doctor friend of mine told me that she considers gluten to behave as a "neurotoxin" for many of us. I've been gluten-free for 3 years, and if I have a bit of gluten accidently, I'll be on the verge of tears for 24 hours. The woman who sits next to me a work has celiac and she has the exact same experience.

It helps me to know that it's the gluten doing it - it's not my life or my job or my relationships. It's just the dumb gluten. I always drink lots of water on those days , and if it's a work day, I start out the day with caffeine - which seems to counter the dull headedness of gluten.

take care and know you aren't alone!


Share this post

Link to post
Share on other sites
Ads by Google:

After an accidental poisoning, I sometimes get really iritable like snapping at people or prone to rage at what are otherwise small annoyances. Gluten can seriously effect my nervous system.

Share this post

Link to post
Share on other sites

On Thursday I accidently ingested gluten, and by Friday morning I had my typical reaction, which is the worst headache imaginable, which does not respond to migraine medicine, and violent vomiting every 15-30 minutes, even water, both of which last for 48 hours, like clockwork, very predictable. I did not get out of bed until Sunday, and felt like I had been run over by a rather large truck (probably a gluten containing bread truck) and I still feel pretty bad. I've been gluten-free for 6-1/2 months and every gluten accident is worse than the one before, but this I know: These episodes are only a reminder of how horrible my pre-Dx life used to be, of all the things I missed out on in my kids' lives, of the needless guilt I felt for "making" myself sick, on and on. Except for these occasional lapses, I am the healthiest person I know--full of vitality , strong and happy. And I will be damned if I will let this disease take anything more away from me--a gluten accident is just that, an accident! I just pretend I have the flu and move on. My happy life started the day I went gluten-free!

Share this post

Link to post
Share on other sites
Guest LilKLJ

Hey all... I'm a 'new' diagnosee.... been learning to go gluten-free since April 1.

I knew about this board when I was going through all my testing ... and kind of scanned over it a few times... but have recently been changing jobs and getting ready to go back to school in the fall (yikes, it's been almost 5 years!)... so I kind of forgot about it...

I was having a bad morning... (well, last 48 hours or so) and somehow found my way back here...

And I just wanted to say, THANK YOU!!!

To each and every one of you who posts on here... I'm a member of a local support group, but haven't found as much emotional connection to any of them as I have to all of you on here...

Sometimes, it feels like I'm reading something I would have written myself... and right now would probably be a messy bundle of tears, if I wasn't sitting at work. ;)

I'm this strong, independent woman... who's overcome a lot in life... but for some reason... this disease is really hard for me to cope with... I know it could be a lot worse... and I know it's a 'simple' treatment plan... which is what I tell everyone (including my BF who's been a dream through all of this)... when I put on my brave face and my best smile and tell everyone it's not that bad...

But for the most part... when I'm alone and don't have to pretend anymore... I'm scared. And I have the most uncontrollable moodiness... and I'm an emotional wreck.... I just feel so 'not me'. :(

But it's good to know, that I'm not alone.

Share this post

Link to post
Share on other sites
Guest Libbyk

thanks for all of your thoughtfull responses. Lil klj, you wrote out my mind. I as well like to consider my self active, robust and energetic, but when I get sideswiped, it all goes to s@#$!@#t.

I don't mind being celiac, feeling crummy was just part of life, so knowing how to change that was nothing but positive. BUT, I get really resentful of these setbacks, because I am trying so hard. I feel like, if I am doing everything right, shouldn;t I feel as great as I want to? All the time? forever?


Share this post

Link to post
Share on other sites
Guest NitaB

Lib and everyone!

I certainly feel for you, and understand a bit of what you're going through. It is so hard to understand, when we are trying to be gluten-free, and something catches us off guard! I'm so in the learning process still, so know I'll make more mistakes.

My biggest problem is family gatherings. They know and seem to understand, and try to help with food products for me. But, it seems as there is a barbecue, meal out, picnic, or other all day activity every weekend, and is posing more challenges than I am good at yet. I know it's because it's summer, and everyone wants to get together, but is so hard for me.

I end up either eating something cross contaminated, or maybe even with dairy, that I'm yet unsure of. I haven't gotten sick, but I end up so tired for a couple of days after. Maybe I'm lucky I'm not so sick, like some of you, but no one understands how tired and down feeling I am. After father's day breakfast out today, I was so tired I wanted to nap at 10:30! I dozed a bit, then took a 1 1/2 hour nap in the afternoon. I would've slept longer, but set an alarm!

I'm beginning to think I'm nearly asymptomatic, as only got very sick after some stress at work. Anyone have any ideas about this??? I finally go to a dietician on Tues. I sure hope she can help me a lot!

Anyone else have much help with a dietician?

Share this post

Link to post
Share on other sites

Ads by Google:

I can totally relate to the mood changes during a gluten accident. I got some gluten accidently during my sons birthday dinner on the 10th. He chose the restaurant from our list of "safe" choices, and I tried something that should have been gluten-free (at least by ingredients) and the waiter seems very confident that my meal would be safe. I figured it must have gotten contaminated somewhere in the kitchen, and ended up sick for the whole weekend. It was awful, since I am an absolute grouch when I get contaminated. I feel awful and end up making everyone else miserable by yelling and complaining all the time. I can't believe I used to feel like that all the time! How did my family ever put up with me?

I had to take off a few days from being here online, since I tend to be a little incoherant and make mistakes when trying to do my moderator duties. I am still dealing with the left over DH rash and the occasional sudden bathroom stops, but my head is starting to clear and the fatigue is starting to let up a little bit. The worst part about it was that I had to continue my life as if nothing had happened, since I had responsibilities and also an extra child for the week. I just tried to pare my daily activities down to the minimum and only do the fun activities I had promised the kids. They ended up running wild around the house while I layed on the bed or couch and the house ended up very messy! I am still not caught up on the laundry or housecleaning. :rolleyes:

I hope the rest of you are feeling better.

God bless,


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Who's Online   12 Members, 1 Anonymous, 350 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.


    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Posterboy, thank you sooooo much. I can’t tell you how greatful I am for your long and detailed answer. I have many additional questions (I asked you few more additional questions in my other post about celiac and reflux) I am just trying to find my underlying condition. I am afraid I’ll have to stay with ppi for two additional months, since I have esophagitis grade b, confirmed with biopsy a week ago. It was first time that I have inflamed esophagus. Last endoscopies showed only nonfunctional LES. I think this inflamarion is because od a panic attack after drinking coffee with a lot of sugar and nausea after that. Some coffees make me sick and some don’t. I would just like to find out what relaxes my LES and what is my underlying condition.  Ppis obviously don’t help, since my problema with bloating and gases and reflux are continuing. Please if you have any additional idea what could it be, tell me!!! Best, aya
    • Oh, wow, thanks, I was told by my doctor that I had the "full" panel but I guess not. Unfortunately I have the type of insurance that means I have to see her again before I can do anything else and she is out on vacation until July 10 so there is almost no point in trying to make another appointment before the specialist one. I doubt urgent care would do it?
    • Thank you all for your help!!! It’s a bit clearer now.  I had problems with gases and bloating and reflux a year ago and doc prescribed Lansoprazol. He said my lower esophageal sphiincter doesn’ t work properly.  I was taking lansoprazol 30mg for half a year with huge problems with nausea and even more bloating. Than I lowered the dose to 15 for next half a year and felt better and than stopped taking them. I’ve been off for a months when I started noticing numb tongue and reflux again. So I started taking ppi again. And it’s worse again. I know I have to stop using ppi, but I think I have underlying condition that is making my bloating and reflux and I have to solve it first so that reflux, which is my biggest concern, will go away. I have been anemic long years before taking ppi, now I have low vitamin d, and quite high result IGA 16 (celiac is >20). Can be reason for low vitamin d in ppi too or is more likely because of celiac? Doctors don’t want to make any additional test because they say celiac disease can’t be the reason since this test is negative. And so I am still searching what could be my primary problem. They just want to operate my LES and that’s it for them. But I know this won’t solve my problem since the reason has to be somewhere else. The problem is that the highest dose of lansoprazole is helping me for 12 hours and not 24 like it should. It’s just making my nausea worse and doesn’t help like it should I get bloated with reflux gases, burping 1 hour after eating. My last meal of the day is at 8 p.m. And the worst reflux attac is usually around midnight and 1 a.m. Aya
    • The full celiac panel includes: TTG IGA
      TTG IGG
      DGP IGA
      DGP IGG
      IGA A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to see if you have celiac. It looks like you are missing the DGP tests. Perhaps you can get them done while you are waiting for your gastro appointment. You could possibly have a more definitive result from them.  
    • Hi everyone, I'm currently in the process of getting tested for celiac and have been so stressed about it, it would be amazing to hear from other people who have gone through a similar process to mine. Does this sound like Celiac? Sorry in advance for the following novel! Basic backstory: I went from ages 10-22 without seeing a medical doctor except in emergencies due to being poor. I'm 23 now, and just recently (in February) got health insurance for the first time in my life ever. I always thought I had IBS (frequent diarrhea) which made sense because I was pretty severely abused as a child and would often have to have diarrhea after experiencing those "episodes." My girlfriend's parents paid for me to see a therapist and psychiatrist beginning at age 20 when I was severely depressed and anxious, and they thought it was IBS too. I'm no longer seeing the therapist but wish I was now that this is a problem. The diarrhea details (lmao sorry): I almost never get diarrhea anymore because I was convinced it was IBS and started eating more slowly, taking care to not eat heavy meals when anxious, moving around less after eating, and cutting out dairy and red meat. I will occasionally get diarrhea for no known reason but who knows? It goes like this when I do have it: somewhat sudden pain in my lower abdomen, same area as period cramps. In fact I often mistake the two. I have diarrhea (a lot...), then the pain vanishes. No other stomach or abdominal pains. I never get abdominal pain without diarrhea, and I never continue to feel ill after having diarrhea. I also had a scary incident last August (2017) where I noticed a um...clear stringy substance in my stool. I thought it was a tapeworm, went running panicking to urgent care and gave them a stool sample. They ran a full culture on it (took two weeks) and it was negative. I insisted on doing a second test and it was negative again. So the urgent care doctor said it was probably mucus in my stool. I got the full celiac blood work panel a few weeks ago and all my vitamins, minerals, nutrients etc. were perfect. So I am absorbing my nutrients well enough. BUT the metabolic Celiac test was iffy. I got one "weak positive." I will copy in my test results, excluding the vitamins/nutrients bits. It definitely seems to me that it indicates Celiac but my primary care doctor said she would "interpret it as negative." However she gave me a referral to a gastro specialist who I have an appointment with on July 13. It will be an initial consultation; I can't get an endoscopy unless that specialist agrees to it. So the actual endoscopy may not happen until late July or even August, September... Full list of symptoms: Diarrhea, persistent rash on my chest (little red bumps, always flares up when taking a hot shower or getting extremely anxious--went to a dermatologist for this when I was 9 and he just said it would go away but it never did), occasional small mouth ulcer (haven't had one in about a year and a half), and often feeling fatigued and irritable. I also feel very cold easily, much more easily than the average person. I've also ruled out the following with previous tests: anemia, diabetes, and thyroid issues. Basically every blood test I've ever done has come out perfect until this one weak positive! I should also note here that I have a second cousin with Celiac (my mother's first cousin). I can accept it if it's Celiac. In fact I hope it is because I would love to do away with diarrhea and the rash!!! My BIG fear is that it's Chrohns instead. But I have never had any bleeding in that region. Overall Celiac Disease Panel results (all results just said "normal"): WBC, RBC, Hemoglobin, Hematocrit, MCV, MCH, MCHC, Neutrophils, Immature Granulocytes, Lymphs, Monocytes, Eos, Basos, Platelets, Neutrophils (Absolute), Immature Grans (Abs), Lymphs (Absolute), Monocytes (Absolute), Eos (Absolute), Baso (Absolute), RDW. Metabolic Celiac Test results attached as an image... Thanks all. x Edit: Forgot to mention that I am currently still eating plenty of gluten, and even have been known to eat an entire baguette by myself in one sitting haha. I do not get diarrhea after this. If my diarrhea is connected to gluten, it's certainly very delayed.  
  • Blog Entries

  • Upcoming Events