Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Bingeing


beautifully-quiet

Recommended Posts

beautifully-quiet Newbie

I have been gluten free for a number of years now, over five, and I was very strict on the diet for the first 2 years: no gluten, no dairy, no corn, no rice, and no phosphoric acid. All of them would make me sick. After a while I found I could have everything again, except of course gluten, and I started slacking off- candy, mexican food, etc.

Last summer I stopped caring nearly so much about being gluten-free. I tried a muffin at my work and didn't get really sick, so the next day I tried a sandwich, and still didn't feel what I used to. To make a long story short, I had a 3 month long binge where I ate wheat almost every day, really BAD things like bagels and bread and wheat-thickened soup.

I am now having a really hard time going back to 100% gluten free, and I have much temptation to let the small things slide, like salad dressings, barbeque sauce, etc.

My question is: has any one else had such a long binge, and how did you get yourself to care again. I know all the damage I have done to myself, yet that doesn't stop me. Any suggestions or stories?

thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



LisaJ Apprentice
I have been gluten free for a number of years now, over five, and I was very strict on the diet for the first 2 years: no gluten, no dairy, no corn, no rice, and no phosphoric acid. All of them would make me sick. After a while I found I could have everything again, except of course gluten, and I started slacking off- candy, mexican food, etc.

Last summer I stopped caring nearly so much about being gluten-free. I tried a muffin at my work and didn't get really sick, so the next day I tried a sandwich, and still didn't feel what I used to. To make a long story short, I had a 3 month long binge where I ate wheat almost every day, really BAD things like bagels and bread and wheat-thickened soup.

I am now having a really hard time going back to 100% gluten free, and I have much temptation to let the small things slide, like salad dressings, barbeque sauce, etc.

My question is: has any one else had such a long binge, and how did you get yourself to care again. I know all the damage I have done to myself, yet that doesn't stop me. Any suggestions or stories?

thanks

Hi There -

I just started gluten free again about 2 months ago. I was gluten free from the time I was 2 until I was 18. A doctor mistakenly told me at that time that I did not have Celiac Disease - and unfortunately, I didn't question it. I started eating all the foods I could never have before and it was great - I hardly ever got sick - until about 2 years ago. I slowly started getting sick again - and it kept getting worse and worse. I don't know why for those 6 or 7 years I felt fine, but believe me, it will probably catch up with you just like it did me. I suppose eventually I just eventually damaged myself enough to have symptoms again and I finally got retested (positive, of course). And it is REALLY hard after all that time to go gluten-free again, but I just think of my health - I plan to be around for a very long time and don't want to do anything to jeopardize that! I'm willing to do whatever it takes to stay as healthy as possible. When it gets tough and temptation is everywhere, I just try to remember that at least this disease is something I can control. Good luck to you.

rez Apprentice
I have been gluten free for a number of years now, over five, and I was very strict on the diet for the first 2 years: no gluten, no dairy, no corn, no rice, and no phosphoric acid. All of them would make me sick. After a while I found I could have everything again, except of course gluten, and I started slacking off- candy, mexican food, etc.

Last summer I stopped caring nearly so much about being gluten-free. I tried a muffin at my work and didn't get really sick, so the next day I tried a sandwich, and still didn't feel what I used to. To make a long story short, I had a 3 month long binge where I ate wheat almost every day, really BAD things like bagels and bread and wheat-thickened soup.

I am now having a really hard time going back to 100% gluten free, and I have much temptation to let the small things slide, like salad dressings, barbeque sauce, etc.

My question is: has any one else had such a long binge, and how did you get yourself to care again. I know all the damage I have done to myself, yet that doesn't stop me. Any suggestions or stories?

thanks

Do you have proven Celiac or do you just think you are gluten intolerant?

Viola 1 Rookie
Do you have proven Celiac or do you just think you are gluten intolerant?

This is an important question. Allergies and intolerances sometimes change, but Celiac is constant, and you would be doing yourself some great harm but eating gluten.

happygirl Collaborator

If you are a Celiac, I recommend the book in my signature. It might help you get on track. Best of luck.

almostnrn Explorer

The first year or so that I was diagnosed I did this from time to time. The first time it happened was after my second biopsy for DH. The dermatologists office called to give me the results and told me everything came back normal...Yippee I thought, I'm free. I proceeded to go out and eat a bunch of gluten filled food and BLAM the rash was back. Called back to the dermatologist and found out that my results wern't normal they were positive for DH, it was not a happy day for me or the nurse that made the error in reading me the results. So for the most part I was indeed gluten-free but I will admit not nearly as strict about it as I am now. If I went out to a restaurant I would order what I figured would be safe, etc...now I get that I was soooo far off track. The biggest problem was other than the DH (like that isn't enough!) I was clinically speaking asymptomatic. By that, I mean I didn't have the majority of gut issues that most people have but looking back I had plenty of symptoms. My poor kids probably felt like they were stuck in hell. I had a constant headache, I was extremly short tempered, no energy. I just chalked that up to my husband being overseas, full time school, full time work and a very sick mom that I was trying to care for (hey makes sense right?!). I would even go for long stretches where if I did "cheat" I wouldn't even have a breakout of DH.

We transferred to a new base and during my yearly physical my doc insisted we do a scope. He told me in some cases it is possible to have DH and not celiac and thought we should have some clarity on my diagnosis. Of course I was told to eat gluten, as much of it as I could...I believe the actual phrase was "load up on that stuff". I saw this as my last hoorah with normal food, six weeks of food bliss. Well to make an already too long story shorter, in my husbands opinion it almost killed me. About four weeks into it the rash was almost unbearable, fatigue, nausea, daily migraines, depression, MAJOR brain fog, I mean you name it I had it. The migraines and brain fog had me afraid to leave the house alone. I know I was in a new place and all but I was getting lost going down the street! Then came the ataxia on top of everything else and I could barely get up off the couch to do anything. It felt as if someone had taken the world and tilted it on its side. The entire experience was absolutely terrifying for me and for my family. I often refer to this past summer as the one I lost to gluten. It took me a long time to heal and get back to my usual self and now I am WAY anal about gluten. I am sorry this is so long, but I wanted you to understand how it finally crashed down on me because I was mostly "asymptomatic" too. I think for some people with Celiac you don't even realize how sick you really are because there are so many symptoms that can be blamed on regular life. Please stop eating stuff you know you can't have, I wouldn't wish this experience on anyone else!

Saz Explorer

After been gluten free from 6- 15 I then had a Four long binge, In the last year 2 gluten free days a week was me being "good" In August last year I decided that I needed to stop. I haven't had bread since september last year. Like you I still found it hard to get rid of some things(like chocolate bars) The first Thursday of this year I ate what I intended to be my last intentional glutning. I got as far as today before having a some youghurt in a smoothie. It was expensive and I didn't want to waste it. (I assumed that if gluten-free as other in the range are).

It's taken me awhile but I am getting there. I actaully think that I would be physically sick if I were to eat a normal piece of bread now- Not because of gluten but because I don't think I would like the taste. I buy a fair bit of the speciality gluten-free products, it is more expensive but I figure it is better than eating something I can't have.

Like I said I ate gluten today, so Im not perfect yet, but I'm almost there, I can just go without now (mostly) and it doesn't bother me.

Good luck.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kbabe1968 Enthusiast

I've only been doing the diet for 16 days, so I'm NO expert. BUT I can say, i think it's easier to give up when you have the "gut" reaction! I mean, it makes you so obviously sick, that you can say "why would I want to do this to myself". But when you have little or no major symptoms, I'm sure it's hard to justify because you can not physically feel or see the difference.

I know how hard it is. Realizations hitting me this week, no more of some of my all time favorite foods.

You NEED to do it for your health.

Hoping you find the inspiration you need to get back on track. You ARE worth it! :D

Nancym Enthusiast

For me the key is to think of gluten foods as poison. I don't think "I can't have them", I think "I don't eat that". There's a difference that seems small but it does work. Also understanding the damage you're doing to your body, even if you can't feel it, is important. So reading about the horrible diseases and things that can befall you if you continue, might help put you in the proper mindset. Lymphoma, autoimmune diseases, brain lesions... any of that put the fear of gluten into you?

kbtoyssni Contributor

When I realized I needed to go peanut free, I was having a lot of trouble giving it up. Even though peanuts were making me sick, I couldn't give it up for myself. I had to give it up for other people. I thought about my family and friends and coworkers who have to deal with me when I'm sick and brain fogged and miserable and complaining and not able to perform to the best of my abilities. I couldn't do that to them - it wouldn't be fair.

Viola 1 Rookie

Perhaps instead of thinking of what you can't have, think about what you can have. There are many chocolate bars that are gluten free, even potato chips like Lays Staxx, or Hardbite that are gluten free. Lots of ice creams, and of course good meals that just need gluten free spices and sauces.

In chocolate you need to look for Malt flavouring or of course cookie ones. They are a no no,. The same with ice cream. Chapman's ice cream has gluten free right on it, as do a couple of others.

SchnauzerMom Rookie

You have to keep reminding yourself how bad gluten is for you. It's actually a poison for you. For the sake of your health and your family you need to avoid it like the plague. This is what I tell myself and so far it has worked. If I get gluten it's by accident.

beautifully-quiet Newbie

Thank you everyone for your replies! To answer the questions: I have never been officially diagnosed as celiac, but there was such a difference in my health after I went gluten-free that I am sure I am of it anyway. Plus my mom is too, and we both know about the heriditary side of it.

I'm going to start a food journal tomorrow, and I'm back to full-time at my job, and for me being ill at work is the absolute worst, so I'm much less likely to slide. I don't feel nearly as meloncholic about the whole situation anymore either, so things are going to work out fine.

Thanks again!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748

    Bryan s
    Newest Member
    Bryan s
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.