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

This May Sound Crazy...


Beth in NC

Recommended Posts

Beth in NC Contributor

I'm sure I got your attention now! LOL!

I've been diagnosed for about 6 1/2 weeks. I've had a few what I THOUGHT were glutenings from CC, but now I'm not so sure. They were one time D episodes that were the morning after something I ate the night before. Sore muscles and joints, etc, but that has seemed to settle in as the norm for the most part...the aches and pains.

Yesterday I chose to eat at a mexican restaurant with my family, and just stick with the salsa and chips. I checked and they said not flour was in them, but my son suspected they were probably fried in the same oil as any of the flour tortillas for taco salads. I went with it anyway because I had to know.

Let me preface my "reaction" to what I ate with what has been normal for me in recent weeks, at least intestionally. I was chronically constipated for as long as I can remember before my diagnosis. Day three of gluten-free diet and that was no more. I tended more toward loose stools, but not what I would call D because the frequency wasn't there on a regular basis. 4 days ago I went back on Paxil and my GI track has slowed WAY DOWN ever since. I've actually had a LITTLE trouble going to the bathroom. NOT my new Celiac normal.

Back to my "reaction"....a couple hours after I ate, I got a stomach ache...like there was a brick in there. Stayed that way for hours. Finally went away during the evening. Today I'm have a LOT of aches and pains, more than the last few days, but otherwise, I'm ok.

Would being constipated totally mask a reaction? Or maybe I just didn't get CC?

Have you ever considered glutening yourself on PURPOSE, just once, just to know what your reaction would be? Crazy, isn't it? Part of me just wants to know what to expect, since everyone's reactions are so different.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

I didnt have to do it on purpose. It was done for me at Cheesecake factory and at Whole Foods. :(

Fiddle-Faddle Community Regular
Have you ever considered glutening yourself on PURPOSE, just once, just to know what your reaction would be? Crazy, isn't it? Part of me just wants to know what to expect, since everyone's reactions are so different.

I tried doing just that, about 6 months into the gluten-free diet. I ate a homemade Chinese dumpling that a Chinese friend made.

I had no reaction whatsoever.

Which means I have no idea when I've been cc'ed or even majorly glutened. :( Which means I have to be even more careful.

Beth in NC Contributor
I tried doing just that, about 6 months into the gluten-free diet. I ate a homemade Chinese dumpling that a Chinese friend made.

I had no reaction whatsoever.

Which means I have no idea when I've been cc'ed or even majorly glutened. :( Which means I have to be even more careful.

I guess that is why I'm so frustrated with just generally feeling like crap! I don't know whether to be searching out something or just being patient waiting for the healing and recovery to take place.

I'm seriously thinking of trying it. I have no other appts scheduled this week.

roxie Contributor

This post caught my attention because cheating is all I can think of lately. I was diagnosed with Celiac Disease in March, and have tried to stay gluten free, but I am slowly losing it because I want things that I can't have MORE THAN EVER right now. I have 3 small kids, and it just about kills me fixing their dinners every night, and watching them eat my all time FAVORITE chick-fil-a sandwhich. I refuse to make my family be gluten free because I don't want them to feel SO DEPRIVED like I do. I keep thinking I'm just going to cheat every once in awhile and see what happens. I haven't had the guts to do it yet though.

P.S. ShayFL if you read this, I am really curious to know more about neem. You wrote that it has helped you tremendously. Do you take it in pill form, and what brand?? Any side effects??

shacon-bacon Apprentice

I've purposely glutened myself a couple times. Not because I wanted to see what the reaction would be (I already know) but because I HAD to have something...The last time I did it, it was pizza and the wierd thing was the pizza didn't even taste good...I asked my mom if she thought it tasted funny and she said no it tasted normal, so maybe my tastes are changing, who knows? All I know is I wouldn't do it again...I always do it on a Friday night so I have the weeked to recover...It sounds ridiculous and it's only been maybe 2 or 3 times...One time I went CRAZY and ate everything I could find gluten b/c I figured if I was gonna suffer I better make it worth it...Boy did I pay! Took a couple days for me to feel back to normal...

lizard00 Enthusiast
This post caught my attention because cheating is all I can think of lately. I was diagnosed with Celiac Disease in March, and have tried to stay gluten free, but I am slowly losing it because I want things that I can't have MORE THAN EVER right now. I have 3 small kids, and it just about kills me fixing their dinners every night, and watching them eat my all time FAVORITE chick-fil-a sandwhich. I refuse to make my family be gluten free because I don't want them to feel SO DEPRIVED like I do. I keep thinking I'm just going to cheat every once in awhile and see what happens. I haven't had the guts to do it yet though.

P.S. ShayFL if you read this, I am really curious to know more about neem. You wrote that it has helped you tremendously. Do you take it in pill form, and what brand?? Any side effects??

Hi Roxie :)

I know you don't want to make your family gluten-free, and you don't have to... but when you cook at home, it needs to be gluten-free. It's not selfish, it's to preserve your sanity and health. I have a child too, and thus far he can handle gluten, as can my husband. But I will NOT cook two meals. If we go out, they can get food with gluten in it, but if we eat pasta, it's rice pasta for the whole family. And oddly enough, no one can tell the difference. No one. It's really not so hard for any of us.

And for your sanity, change the way you look at being gluten-free. It's hard to do at first, but look at it as a choice. You choose to be healthy for your family, for yourself. And then start to explore ways that you can make your fav foods gluten-free. You'd be really surprised at the things you can come up with.

Cheers B)


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast
I've purposely glutened myself a couple times. Not because I wanted to see what the reaction would be (I already know) but because I HAD to have something...The last time I did it, it was pizza and the wierd thing was the pizza didn't even taste good...I asked my mom if she thought it tasted funny and she said no it tasted normal, so maybe my tastes are changing, who knows? All I know is I wouldn't do it again...I always do it on a Friday night so I have the weeked to recover...It sounds ridiculous and it's only been maybe 2 or 3 times...One time I went CRAZY and ate everything I could find gluten b/c I figured if I was gonna suffer I better make it worth it...Boy did I pay! Took a couple days for me to feel back to normal...

I did it for the rxn, and boy did I regret it for days!!!! And now, when I get glutened, I am recovering for days!

Sometimes we have to learn the hard way, but if ever you listen to other's experiences.... I wish I had of.

Beth in NC Contributor
I did it for the rxn, and boy did I regret it for days!!!! And now, when I get glutened, I am recovering for days!

Sometimes we have to learn the hard way, but if ever you listen to other's experiences.... I wish I had of.

rxn?

lizard00 Enthusiast
rxn?

reaction

Beth in NC Contributor
reaction

Thanks.

Fiddle-Faddle Community Regular
This post caught my attention because cheating is all I can think of lately. I was diagnosed with Celiac Disease in March, and have tried to stay gluten free, but I am slowly losing it because I want things that I can't have MORE THAN EVER right now. I have 3 small kids, and it just about kills me fixing their dinners every night, and watching them eat my all time FAVORITE chick-fil-a sandwhich. I refuse to make my family be gluten free because I don't want them to feel SO DEPRIVED like I do. I keep thinking I'm just going to cheat every once in awhile and see what happens. I haven't had the guts to do it yet though.

P.S. ShayFL if you read this, I am really curious to know more about neem. You wrote that it has helped you tremendously. Do you take it in pill form, and what brand?? Any side effects??

When I went gluten-free, I told me 3 children that they could use whatever bread they wanted for sandwiches at lunch, but that breakfast and lunch were going to be gluten-free--I just didn't have TIME to make 2 sets of meals! That said, I promised them that I would make all their favorites for dinner, but that I would have to make them gluten-free.

So I learned by trial and error (very few errors, btw--it was all MUCH easier than I expected) to make bread, muffins, biscuits, hamburger buns, pizza crust from scratch (but everyone likes the corn tortilla versions just as much, and they are SO easy!), fish sticks, chicken fingers (I just use corn meal and spices for the breading), Chinese food, cakes, pancakes, waffles, cookies--you name it, I made it except for puff pastry.

In the process, I became a better cook, but more importantly--I discovered that the kids had gluten issues, too.

All 3 had occasional (once or twice a week) tummy aches that I assumed were normal. Heck, the pediatrician said it was normal for kids to have occasional tummy aches. These disappeared on their "gluten-lite" diets, only to reappear any time they had gluten-heavy diets.

Son #2's severe eczema improved enormously--and reappeared when challenged with gluten, and disappeared completely gluten-free.

Son #1's schoolwork improved immensely.

#3's bedwetting and tantrums ceased.

So the kids are now gluten-free, and only #3 (age 7) occasionally whines just a teeny bit--but after the last tummy ache, was heard to say, "I am NEVER eating gluten again!" The older 2 are VERY good, and according to their friends' parents, they never cheat, even away from home.

Part of that is because they know (because I promised them) that I will make a gluten-free whatever they feel that they've missed out on--pizza, chocolate chip cookies, whatever.

And of course, gluten-free pasta is the easiest thing in the world to sub for regular pasta~ :)

roxie Contributor

It's so interesting (and helpful) to read your replies! I actually did have my oldest son tested for Celiac last week because he has always had kind of a touchy stomach. I was so happy when his test came back negative. It would be one thing if I only had to cook gluten free for my kids, but I also have issues with soy, dairy, and nightshades. My food is very limited, so I feel that I am forced to cook 2 different meals EVERY NIGHT. I literally eat plain chicken and plain vegetables almost every single night. I know that I am jeopardizing my health if I decide to cheat, but I almost feel that it might relieve some of the constant anxiety I feel about foods I can't have anymore. I guess it's all going to depend on how bad I feel after I do it. However, like your saying, maybe it won't taste as good as I think it will. But MAYBE it will taste INCREDIBLE!!

purple Community Regular

"Cooking Free" by Carol Fenster is a good gluten-free cookbook for people with allergies.

Good web sites I found so far for allergies:

Open Original Shared Link

click on recipes and then have fun clicking :rolleyes:

recipes and some to season up your food...check out the one for sauces!

Open Original Shared Link

gluten-free/cf, vegan/vegetarian, mediterranean, etc. and...the first recipe I tried was Maui Wowee bars...They were wowee!, she is a good cook!

Please don't cheat...remember the old saying "cheaters never prosper" (your body will pay for it)

When I used to have a day care, there was always one boy that cheated at games and it took all the fun out of the game. I say that b/c cheating will take the fun out of your day.

This is my new saying(may it be yours too): when the going gets rough...make your...?...and eat it too. ( ?= cake, pizza, brownies, or whatever) You can't do it the old way so you gotta do it the new way. Have cookies for breakfast if you have to :P

Beth in NC Contributor

FOR THE RECORD...I, the original poster, am not encouraging anyone to cheat. I am not doing this because I am craving something or because I just want to eat something. This is more of an experiment for me to see my reaction and it will the the one and ONLY time I do it.

I just wanted to make sure no one thought I was promoting the idea that this thread has taken on. Not my intent.

OK, bye now!

FoxersArtist Contributor

I have considered glutening myself on purpose so that I know what I am up against. I have been gluten free since may and to date, I don't think I have had any encounters - though SOMETHING is continuing to cause me inflammation at times - preservatives and food coloring I believe. That is still a theory to be proven. I want to know what might happen to me if I accidentally glutened myself and I was just talking with hubby about it the other day. I worry that the reaction could be really bad since my original symptoms were already quite bad but I really worry for hubby who swears that he has gotten CC from time to time and his throat and face swells. I make him carry an epi-pen wherever he goes now...

-Anna

Beth in NC Contributor

I'm still here...and I'm fine, after having a Chicken Filet Biscuit from Chick-fil-a this morning at 10:30. I have to say I'm a little ticked off. All I had was a moderate belly ache for a couple hours. No gurgling, bloating, nadda...nothing.

Maybe I'm one of those that it takes a while to hit.

Maybe I'm a Silent Celiac.

How am I EVER gonna know if I'm glutened or not? Does that mean all the stuff I THOUGHT had glutened me in the past few weeks was really a fluke? I mean, if a BISCUIT doesn't do it, some trace amount from CC isn't going to do it! But all the while...this stuff is wearing down my small intestine and makes antibodies against other parts of me and attacks them too...leaves me prone to cancer if left untreated.

I didn't want to have some horrible reaction, but I sure expected more than this. I'm.really.frustrated.

ShayFL Enthusiast

Did you test positive with blood and biopsy Beth? Or are you self-diagnosed?

Beth in NC Contributor

Positive for BOTH!

ShayFL Enthusiast

So you were trying this just to see if you have a reaction so you will know when you are glutened.

I know you have not been at it very long. Many say that over time their reactions to CC get stronger. So hang in there.....might get a strong reaction out of you yet.

Now that you have experimented, I HOPE you will stop eating the gluten and poisoning yourself.

Beth in NC Contributor

I've been VERY diligent up till now and this was only a one time thing. But how will I EVER feel comfortable eating out if I don't have a reaction to let me know something was amiss?

Do I just get my blood checked every month to see the antibody levels?

ShayFL Enthusiast

I say you can eat at "better" restaurants and be extra careful. I do take Glutenease.....dont shoot me people. I only eat out about once a month. I keep a bottle in my purse just in case.

Fiddle-Faddle Community Regular

I totally understand why you did it. And my reactions (or lack thereof) are about on par with yours.

Just do the best you can. I don't eat out much, not because of cc, but because I get so frustrated trying to explain to Idiots that white bread is really made from wheat.

lizard00 Enthusiast
I do take Glutenease.....dont shoot me people. I only eat out about once a month. I keep a bottle in my purse just in case.

Shay, have you found that to be helpful? I eat out at Chipotle, but I can see exactly what goes on there and know their cooking process. It's at nice restaurants that I usually get nailed. The OD at the health food store nearby suggested it, but I haven't tried it yet. I do understand it's not a take it, eat whatever floats your boat type thing, but to help with CC? We can't live in a bubble.

Don't worry, no shooting from me. ;)

JNBunnie1 Community Regular
I've been VERY diligent up till now and this was only a one time thing. But how will I EVER feel comfortable eating out if I don't have a reaction to let me know something was amiss?

Do I just get my blood checked every month to see the antibody levels?

I didn't think I was very sensitive until I was truly gluten free for about 4 months, and then had some rotisserie chicken from sam's club that I 'thought' had never been a problem before. I was sick for a MONTH. And I got the DH rash for the first time too, I guess that's what triggered it. That lasted for two months. I can only recommend to people to just let it go, make your choice every day to stay healthy. Food is supposed to nourish us, not control us. When I first discovered I had a problem with wheat (hadn't heard of celiac yet) I ate rice pasta with meat sauce twice a day for three months straight because I was so tired I couldn't think of anything else. trust me, it's worth it.

For the person who can't have gluten-dairy-soy-nightshades. Try boiling some pasta, drain, stir in an italian dressing that's safe for you (I'm not familiar with the nightshade family, making your own is super-easy) and add peas and flaked salmon or tuna or chicken chunks or corn or white beans or broccoli or wilted spinach or anything that's safe for you. This is a very easy dinner. The nice thing is that as long as you use enough dressing, you can save some for a cold lunch the next day, even get some soy-free mayonnaise to add, which contributes to the texture. It's a lovely dish either hot or cold. I personally love it hot with roasted red pepper dressing and salmon and peas. Please stop by the recipes forum, there's so much you can still eat, there's no need for anxiety about what you can't have.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,136
    • Most Online (within 30 mins)
      7,748

    Jamy
    Newest Member
    Jamy
    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

    • Sarah Grace
      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
×
×
  • 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.