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

I Glutened Myself...on Purpose!


flxmanning

Recommended Posts

flxmanning Apprentice

Okay, so it all started 2 days ago when at school (culinary school), my teacher asked me to cook a miso-marinated halibut for dinner. It smelt so good and I love miso, I just couldn't resist. I had some. After that I felt so sick. I went to bed feeling sick. I woke up still feeling sick the next day. After that I was ravenous. I figured,"hmmm, I feel sick already, so I don't need to worry about being sick...I'm there already." I wanted one last shabang. On last gluten-filled day. The whole day I didn't care. I went on to have veggie ground round for lunch...oh how I missed my veggie meats...ice cream later on that night with rice krispies...yeah, I missed those too. Oh yeah, BTW, I'm lactose intolerant too.

I know what you must be thinking...why on earth would this girl do this to herself? Why would she purposely make herself sick? I don't know! I've only been on the gluten-free diet for 2 weeks and I guess I just thought it would be too much, reading lables all the time, making everything from scratch, etc. I've been drinking water and trying to flush everything out of my system because now I remember that horrible feeling I had constantly before finding out about my celiac disease and I want to go back to those wonderful 2 weeks of feeling great, but I honestly think that I experienced "mind fog" that I've heard about. I just didn't care, I wanted all those things that I can't have anymore. I had my last shabang and, well, it sucked. I still feel so sick.

Please tell me that there's someone else out there whose done this before. Someone who just thought the whole thing was too much to take on and, well, made themselves sick with the consequences.


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



Celiac.com Sponsor (A8-M):



queenofhearts Explorer

Don't feel bad. Many of us have wavered at first. Remember, there is an addictive quality to gluten, & it's hard to shake an addiction! You'll get past this stage & rejoice in your new health, & you'll no longer be tempted.

One thing that helps me when I long for really good artisanal bread (the thing I miss most) is reading the thread about all the great things about being gluten-free. I'll see if I can track it down.

By the way, there are gluten-free rice krispies out there, called Erewhon crispy brown rice cereal I think. So you can still have that one!

Leah

Here's that thread:

Open Original Shared Link

Gluten Slayer Rookie

I'm ready to join ya. I want pizza, a few beers and maybe a cheezeburger and some cake and cookies. It's only been a week for me, I don't think I can do this.

queenofhearts Explorer

Yes you can! Go get a copy of Bette Hagman's Gluten Free Gourmet & make some pizza. Buy some New Grist beer. You can have the best of both worlds!

Leah

2kids4me Contributor

You are normal , normal , normal!

The toughest time for both my kids was the first month and then occasional cravings and days where they wish they could eat a regular doughnut.

My daughter snuck a sandwich at a church lunch and was sick for a couple of days - She cried when she told me what she had done, just hugged her and helped her through the icky days that followed. She never felt the desire to do it again, she still misses some gluten food but said it wasnt worth it to feel so crappy.

The longer you are on it , the easier it will be to stick to it - but it will never be "carefree".

For my kids, when they have days like you describe - I make fun platters of their favorite foods, some is "junk" and some is good for you......

strawberries, banana, chips and dip, veggies, corn chips with melted cheese and salsa, popcorn, Thai noodles, gluten-free spagetti with meatballs, chicken and mashed potatoes, ...stuff like that. I also keep gluten-free choc cupcakes and gluten-free gingersnaps in the freezer too - emergency comfort food!

Make a list of favorite comfort foods that are gluten-free (and lactose free in your case :) )

Have them on hand and dive in.

Hope you feel better soon

elonwy Enthusiast

When I was four months gluten-free, I went home for Christmas to see my mom. I'm from Hawaii, and everything there is made with soy sauce. I was good for a week, and then I went by the local store in the Village my mom lives near. The same old Japanese lady has been making musubi there since I was a kid. Musubi is a type of square sushi, often served warm, with cooked hot meat in the middle, usually teryaki chicken or spam. Everyday after school the bus would drop me off at this store and I would go in and have a musubi and sometimes some Manapua (a type of Bao). I can't eat either of these anymore. I couldn't stand it. I couldn't quite buy the Manapua, since its a big floury sticky bun, but I bought three musubi and went back out to the car and gorged myself. I was sick in minutes. I feld horrid for the rest of the day. Thats the first and last time I ever cheated, but I couldn't help myself, the emotional attachment to that food was too great.

I've since learned how to make my own Musubi at home using gluten-free soy sauce. I haven't been able to recreate Bao or Manapua or any Dim Sum, really, but I'm going to figure it out eventually.

Beware the "we'll I'm already sick it doesn't matter". I completely understand the logic, but every successive gluten ingestion extends the time you feel sick that much more, so it turns into a vicious cycle.

It can be hard to let go of your old food habits, but I have found replacements for pretty much everything I loved dearly except Dim Sum, and most of them are more healthy to boot. Get yourself some gluten free treats (Some Donuts from Kinnikinnick? YUM) and have them handy to reward yourself instead of gluten food. I now crave gluten-free goodies instead of old food.

If I get tempted to cheat ( oh just a bite of that dish), or not pay attention as closely, I think about all the stuff that I want to do in the next few days and ask myself "Do I want to get all that done and have fun with my friends or do I want to lie in bed not being able to get too far from the bathroom" and that just clears up that confusion.

Go to your local Whole Foods or Wild Oats or TJ's and explore whats gluten-free, find stuff that looks good and have fun with it. There is a post on this board about good and bad gluten-free food, cause buying the wrong thing can have worse results.

Kinnikinnick is good I love all their stuff and they provide most of my "treats" like bagels, english muffins and donuts. Most of thier stuff is Casien free too. Whole foods bakery has some really yummy things, cookies and muffins, and thier pizza crust is really good. There is gluten-free miso too, that isn't hard to find. If you live alone, find some friend or a food bank or something like that and pack up all your gluten food and donate it, get it out of the house. If you live with someone, I would suggest segregation in the kitchen. I bought a bunch of cute stickers and made up a system for whose food was whos, and I got to play with stickers.

I'm not lecturing, I'm just remembering how hard it was, and trying to offer ways to cope. Once you get the hang of it, theres a sense of pride and happiness, not to mention how great it is to feel better for days and weeks on end.

Good luck, be strong. Its worth it.

Elonwy

Fiddle-Faddle Community Regular
Okay, so it all started 2 days ago when at school (culinary school), my teacher asked me to cook a miso-marinated halibut for dinner. It smelt so good and I love miso, I just couldn't resist.

I just checked my miso--it's Hikari Miso and the ingredients are water, soybeans, rice, salt, sake lees. I thought it was gluten-free--no wheat, no barley. I haven't reacted to it (yet)--does it have gluten?


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



Celiac.com Sponsor (A8-M):



RKB-MD Rookie

I've been diagnosed for 36 years and I will admit that until about 6 years ago I wasn't that "clean" with my diet. It's a difficult life to live, and the hardest part is the "suprise" things that get you.

Whatever you do, do NOT intentially eat gluten containing products.

Pretend that you are just quitting something, like cigarettes. Reward yourself (as if not spending hours in the bathroom with an aching butt isn't reward enough!) for days, weeks, months of "denying" yourself those foods you crave, but are slowly killing you. Enjoy finding replacements. Some will taste like crap, some will be good. Revel in abusing waiters who screw things up (I sure do!).

Enjoy your new, healthy life!

Fiddle-Faddle: Soy sauce brewed over rice with no wheat/barley is gluten free! Enjoy!

Rikki Tikki Explorer

It's ok, many of us have been thee. Initally I cheated sometimes because it was so hard to give all "the good food" I have to admit to even cheating sometimes now, well, maybe once in the last year, but it seems the body get's so used to being gluten-free then you get really sick.

It will pass, just accept that you cheated and try not to again. We are here for you. :rolleyes::rolleyes::rolleyes:

skoki-mom Explorer
Okay, so it all started 2 days ago when at school (culinary school), my teacher asked me to cook a miso-marinated halibut for dinner. It smelt so good and I love miso, I just couldn't resist. I had some. After that I felt so sick. I went to bed feeling sick. I woke up still feeling sick the next day. After that I was ravenous. I figured,"hmmm, I feel sick already, so I don't need to worry about being sick...I'm there already." I wanted one last shabang. On last gluten-filled day. The whole day I didn't care. I went on to have veggie ground round for lunch...oh how I missed my veggie meats...ice cream later on that night with rice krispies...yeah, I missed those too. Oh yeah, BTW, I'm lactose intolerant too.

I know what you must be thinking...why on earth would this girl do this to herself? Why would she purposely make herself sick? I don't know! I've only been on the gluten-free diet for 2 weeks and I guess I just thought it would be too much, reading lables all the time, making everything from scratch, etc. I've been drinking water and trying to flush everything out of my system because now I remember that horrible feeling I had constantly before finding out about my celiac disease and I want to go back to those wonderful 2 weeks of feeling great, but I honestly think that I experienced "mind fog" that I've heard about. I just didn't care, I wanted all those things that I can't have anymore. I had my last shabang and, well, it sucked. I still feel so sick.

Please tell me that there's someone else out there whose done this before. Someone who just thought the whole thing was too much to take on and, well, made themselves sick with the consequences.

I fantasize about doing what you just did. So far I haven't caved, but I wonder if I can seriously make it through the next 50 years or so without doing it just once. Like you, if I had toast or cereal or something for breakfast I'd probably figure I'd already blown it and head to the nearest Chinese buffet. So, I understand the mentality behind it and I don't think you are weak or crazy, I just think you are normal and I hope you feel are feeling better soon. Don't be too hard on yourself, this is not an easy lifestyle. I did have a quick cheat once (not a binge like you describe), I ate Santa's cookie on Christmas Eve. I was kinda annoyed actually that I had ZERO reaction to it. It makes it hard when you don't even feel sick. I felt like I deserved to be sick for being weak, but hey, I'm only human too.

Fiddle-Faddle Community Regular
Fiddle-Faddle: Soy sauce brewed over rice with no wheat/barley is gluten free! Enjoy!

Thanks, RKB_MD!

I've tried La Choy and a tamari that I found at Whole Paycheck (I mean Whole Foods), but neither of them come close to what I think of as "real" soy sauce (the stuff I used to buy at the Asian grocery). I use La Choy (grudgingly), and add a little sesame oil and a little molasses, but I still miss my real soy sauce! :(

elonwy Enthusiast

Have you tried KAri-Out? It comes in individual packets like ketchup. I bought a 500-pack box from the supplier in White Plains, because i like it best, and always like to have soy sauce in my purse cause I eat alot of sushi. Thats the smallest order you can make with them. I think there is a place online you can buy the individual packets, but if you'd like to try it let me know I could send you a couple packets. I've got plenty :)

Elonwy

eleep Enthusiast

It must be particularly tough when you're in cooking school and have to deal with gluten-containing foods on a regular basis. I know that I didn't really feel like I "missed" pizza until my roommate ordered take-in pizza from the best place in town! If that stuff were in front of me all the time, I might be tempted to cheat too!

eleep

flxmanning Apprentice

Well, the good news is I learned my lesson. I don't know if it's because I was gluten free before having that stuff or what, but I honestly cannot remember a time in my life that I've ever been that sick. It was so horrible, my stomach was HUGE, I kept vomiting and having D, my mind was in a million places at once, and I was so dizzy all I could do was lay there and close my eyes.

I guess the reason I did it was because of my doctor's appointment on Thursday (the day it all started) when the evil woman basically told me it was all in my head. I started second guessing myself since I didn't get a final diagnosis from the doctor. I had to just make sure that I did, in fact, have an allergy to that stuff. I had to see for myself and now I know.

It is really hard with school and all, but I only have 7 weeks left and since I don't want to spend those weeks as sick as I was these last couple of nights I'm going to stay gluten-free no matter how tempted I might be.

Thanks so much for the encouragement and the reassurance that I'm not crazy:)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.