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Does Anystill Eat Gluten?


uhmanduh

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dionnek Enthusiast

I just wanted to say Thank You to all of you for your support of everyone. I have only been gluten-free for 5 1/2 months (dx in May), but I am not healing (just had another biopsy/scope and villi are still flat) so I was thinking of just giving up. This is adding so much more stress in my life and I already have thyroid disorder among a few other autoimmuse disorders (nothing major) so I thought "heck, I can take my chances with cancer and dieing early" since the gluten-free diet doesn't seem to be doing any good so far (still not feeling any better, but I was never unfunctional). After reading all of these posts, I am determined to try even harder to heal, and will make this first gluten-free Thanksgiving one to remember (hopefully for the good, not bad :D )

BTW, I had severe anemia from the age of 12 with dizzyness and blacking out - did not respond to any amount of iron so drs. just gave up on me, then other symptoms started in my late 20s and by the time I had my baby at age 31 (which required several drugs to get pregnant) I was getting worse and worse and finally found a dr. (the 10th one I've been to) that knew about celiac and dx me. So, just b/c your only symptom right now is anemia, doesn't mean you aren't doing a lot of damage and it will come back to bite you down the road. Of course, I am not judging anyone for giving up, as I know this is very hard and I wouldn't look down on anyone for giving up - I just put the people who have gone through this and stick with it WAY UP HIGH on a pedestal! :)


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tarnalberry Community Regular
So does it really not matter if you just cut back a lot? I use to eat tons of gluten I'm trying to stop, but it still is REALLY hard. BUt does cutting down help at all or just as pointless as eatin a lot? <_<

yes, according to studies, eating gluten approximately once a month leaves you at the same risk for the nasty complications as not being gluten free at all.

you CAN do it! take one problem at a time, and solve each one on its own. in three months, you may find it comes easier if you've really tackled the problems systematically.

Sweetfudge Community Regular

i've had so much temptation to eat gluten...today for example, someone brought pizza to one of my classes, and i chewed the inside of my lip to a bloody pulp fighting off the smells. but i did it, and i felt very proud of myself. i have had lots of accidental glutenings, and i hate feeling so sick. so if i remind myself of those consequenses, it's easier for me to resist.

this lifestyle isn't easy. but being healed is so much better than eating some cake and pizza and suffering for it. even if the suffering is minimal, knowing you are harming your body is something i don't think i could live with. i love being alive and i don't wish to die earlier than i have to. so i'm doing everything in my power to keep my body at it's best.

dionnek - i'm glad you're not giving up on the diet! your body will thank you :) and so will your baby! especially since this is a genetic condition, it is good to set up your gluten-free eating habits in case your children have celiac.

good luck to you all! hang in there, you can do it!!

kbtoyssni Contributor
So does it really not matter if you just cut back a lot? I use to eat tons of gluten I'm trying to stop, but it still is REALLY hard. BUt does cutting down help at all or just as pointless as eatin a lot? <_<

Cutting back is a good start, but you really need to work towards being 100% gluten-free. It is a lot of work in the beginning, but eventually it becomes second nature. Are there certain foods that are really hard for you to give up? Maybe we can help you figure out gluten-free substitiutes for them.

Saz Explorer

As someone who had been very very bad for the last four years I am trying hard to be good. I've had no major gluten since sep 23 wich was half a piece of toast. Note the worrd major, I am quite good at home however when I have been out I've had a few sauces and desserts that I shouldn't have.

So basically to stop myslef from eating I just gradually reduced out of my diet. Now If I am going to cheat I make sure that is with something that I cant Taste the gluten. I am trying hard to stop this also and am I think almost there. What I mean by tasting the gluten is that I do not eat something such as normal pasta, cakes, or bread, or anything that is crumbed. If I did this I would be back at square. The other day for example I got a Caramel sundae from Maccas, while I knew this was bad, I couldn't TASTE any gluten, therefore I didn't crave it later on. I dunno if this makes sense or not but its worked for me.

Also try looking for places that offer gluten-free food, In one area whre I live I can think 5 places where I can sweet treat, three of these do gluten-free mains. I also know of a few cafes that offer something gluten-free although have not eaten there.

Self control gets easier. For example I am so impressed with myself atm. Tonigt I really wanted some chocolate, the only chocolate things in the house are Tim Tams and this mints that are like Jaffas. ( I have no way of reading the ingredients as they were form a resturuant) and I am very pleased to say that I ate neither!

This week has been kinda easy for me was bad at the start, with sundae, plus one truly accidental glutening, and possibly a third, however I just realised that since Tuesday Have def been gluten-free and not even thought about it.

francelajoie Explorer

I decided to go see a gastroenterologist. I have an appointment at the Celiac center in Boston in February. I was thinking of starting to eat gluten again. Should I? I mean won't they put me on a gluten challange? I have been gluten free for over a year now.

Budew Rookie

If you are going to be tested for celiac you must eat gluten before being tested.

"A trial of a gluten-free diet also can confirm a diagnosis, but it's important that you not go on such a diet before seeking a medical evaluation. Doing so may change the results of blood tests and biopsies so that they appear to be normal." Mayo Clinic Quote


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lightningfoot speakin words Contributor
If I feel like hurling, I will eat it.....

I mean when I get glutened I throw up... Not bulimia or sumthin. HEHE sorry! for anyone who was wonderin.

sparkles Contributor

Just a note of advice from someone who is 60 and is suffering from long term gluten use. I was sick for about 20 years before I was diagnosed with celiac disease. I won't bore you with the details of why I wasn't diagnosed sooner but by the time I was diagnosed the doc could tell just by looking at the villa (they were so flattened) that I probably had celiac disease. I had colon cancer, depression, migraines, upper and lower GI symptoms, pernicious anemia - all related to undiagnosed celiac disease. I survived the colon cancer. The migraines and depression have lessened as have the upper and lower GI symptoms....BUT...yes, this is a big BUT! I have permanent neurological damage due to the gluten that I put into my body for 20 years. I have days where I can hardly walk due to the pain caused by neuropathy. I have neuropathy in my feet, legs, hands, arms and even my tongue all due to neurological damage caused by GLUTEN. At 18, it is hard to imagine not being able to move and having to deal with constant pain. It is hard to look into the future and see what the consequences of our actions will be and sometimes, even when we are given the opportunity to learn from the road that others have taken, either by choice or chance, the future seems so far away that what we are doing right now doesn't seem to really impact what might happen later on. I wish that I had been diagnosed sooner and maybe I would not have the physical problems that I have right now but that is not possible for me.... BUT you have the opportunity to make a choice. Living gluten-free is really not so bad. Please rethink your decision. I am sorry if I seem like I am preaching to you. I just know from personal experience that gluten for a celiac is a death sentence.... I am gluten-free now but live with constant pain EVERY DAY from the crackers and cookies and bread and pizza...etc.... that I ate not knowing that they were slowly killing me. Sorry, I didn't realize that this was a teen section only.... I didn't mean to intrude.... take what I said with a grain of salt...

Guest nini

Uhmanduh, try focusing on what foods you CAN have, not on what you can't. Maybe keep some chocolate bars or M&M's on hand for those times when your friends are having cake or cookies... I love Hershey's Dark Chocolate.

judycolby Newbie
Uhmanduh, try focusing on what foods you CAN have, not on what you can't. Maybe keep some chocolate bars or M&M's on hand for those times when your friends are having cake or cookies... I love Hershey's Dark Chocolate.

Are you saying that m&ms are okay? I haven't read the label yet. My son was only diagnosed (actually possibly has this) last week and am trying to find a few "treats" that will make it easier.

jerseyangel Proficient
Are you saying that m&ms are okay? I haven't read the label yet. My son was only diagnosed (actually possibly has this) last week and am trying to find a few "treats" that will make it easier.

m&m's are fine--except the crispy ones that they don't make anymore (but may still be on a shelf somewhere). :)

Budew Rookie

Sparlkes is wise. I as not diagnosed for 30 years. I hope the neuropathy is not permanent. I have cut out all grains linked by their Lectin class. I am having big improvements in the pain so far.

Treats are tough. I eat MnM's and chocolae kisses with almonds. I spoke to hershey and the jolly rancher are okay too.

I also like black olives as a snack. Pecans, raw cashew, and golden delicious apples are the other things on my treats list : )

Hang in there!

Budew

bremac Apprentice
WEll I was very anemic and my body wasn't absorbing the iron pills. So they did a SCOPE and

found out what it was. But like now I'm barely anemic and I dont know. I have to go to my

stomach doctors in November so I guess they wll remind me how bad I'm doing....its just hard

when I'm somewhere iwth friends or somewhere and there is cake and cant eat it. I mean I know

there are those foods...but not right there at that time. It just sucks. I'm not trying to hurt myself

really.

Those were my same symptoms and I got so anemic on the stupid iron pills since I wasn't absorbing them (doctors accused me of puking them up or not taking them, stupid!) Anyways, you will eventually get anemic again if you keep eating gluten, and you will probably get tummy symptoms too eventually, not to mention all the cancers and other diseases you will be more likely to get if you keep eating gluten and letting your body attack itself. I understand how it's hard to not eat gluten when you don't immediately throw up or something when you eat it but try to picture a little army attacking your poor intestines each time you eat a little tiny bit of gluten.

Fiddle-Faddle Community Regular
So does it really not matter if you just cut back a lot? I use to eat tons of gluten I'm trying to stop, but it still is REALLY hard. BUt does cutting down help at all or just as pointless as eatin a lot? <_<

It's kind of like ingesting arsenic--sure, cutting back ought to help some. But do you really want to be ingesting ANY?

Budew Rookie
Those were my same symptoms and I got so anemic on the stupid iron pills since I wasn't absorbing them (doctors accused me of puking them up or not taking them, stupid!)

I keep mentioning that I iodine was a problem for me. It was hard to figure out. So I throw it out there whenever I see folks having trouble with thyroid and anemia. All I had to do was switch to uniodized salt. Suddenly the thyroid meds worked and I had no anemia,

The doctors accused me of taking the meds improperly for 20 years. Finally when I discovered the iodine the whole problem ended in 3 days.

Food for thought.

  • 2 months later...
Liz92 Rookie

There are sooooo many foods you CAN have, like recess, butterfinger, chocolate bars, airheads, most dorritos except nacho cheese(Cool ranch, Salsa Verde, and Black pepper jack are all ok) Except for soy sauce problems, oriental food is great and DELISH!!!! Lots of mexican style food is ok, ice cream is almost always fine, wendys is great to eat at if your celiac... Ya! And often, if you tell your school that your Celiac, they prepare stuff like steak for you. My cousin(who's celiac) went to the MTC and everyday he was served before everybody else with a special gluten free meal.

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    • trents
      I think most of us, when we first got our diagnosis, imagined that going gluten free would be the magic the bullet that would restore us to perfect health. We soon find out that it usually isn't quite that simple and that celiac disease has long fingers.
    • Celiacsugh
      Thanks! I still have much to learn, I'd hoped going gluten-free would be a magic bullet and I'm learning my system is still very sensitive which is overwhelming and discouraging at times. Thanks for the yogurt tip! There is comfort in knowing that this is common during early healing and I'm not alone! 
    • Celiacsugh
      Thanks so much for the response. Are you usually able to pinpoint a trigger when you get the pain again? What I didn’t share in my earlier post is that I also usually eat out on weekends (though I share celiacs/needs to be gluten-free) and I’ve also been under a lot of stress lately in my personal life. While I’m speculating that it’s the wine it could certainly be a number of things. Do you ever notice the pain more when you are stressed? Learning so much about the brain/gut connection and celiacs. Thanks, there is comfort in hearing others have experienced similar symptoms. 
    • Raquel2021
      This was my main symptom. I still get it from time to time. Also feels like a burning pain on the upper abdomen. I think the wine could definitely cause the pain to be worse. There are do many things I still can't eat.
    • trents
      Yes and this is true of gluten free ready made, processed and prepackaged foods in general. In particular, hard to digest polysaccharides are commonly used in these products that give many celiacs issues and I personally don't handle some emulsifiers well. IMO, reactions to these ingredients are often mistaken for a gluten reaction.
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