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What Happens If I Don't Stick To The Diet?
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A little background on me. I've had problems (diahrea, cramping, bloating, constipation, pain) for about a year and finally went to the doctor about 3 weeks ago. He said he wanted to rule out a few things and gave me a blood test--turned out positive for gliadin antibodies. So that positive blood test along with symptoms makes him think I have Celiac's. I have my endoscopy/biopsy on Tuesday.

But the thing is... I don't get sick every time I get in touch with gluten. I can have pizza 5 times and only get sick 3 out of the 5 times. I had waffles today--nothing happened.

So, I'm thinking... what happens if I don't stick to the diet 100%? I mean... if you don't have horrible, painful symptoms every single time, then the tempation to cheat is there, know what I mean? What would happen if I had pizza once a month or went to the Olive Garden on my birthday every year? Would it really do that much damage to cheat on the gluten-free diet every once in a while?

This is all just so sudden for me and I'm in the depression/denial stage I think in regards to giving up all this food for the rest of my life. :(

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Well, you have two choices: to be gluten free or not gluten free. That's about it If you have Celiac Disease and you decide to be gluten free, you will feel so much better that you probably won't want to go back to your old diet.

I, too, had sporadic reactions to the same foods prior to eliminating glutens from my diet. Now that I'm gluten free, I can't even risk cross contamination. The smallest amount of gluten will cause significant abdominal pain.

But, there are so many foods you CAN eat on a gluten-free diet. Healthy, normal foods that you've grown to love, like fresh fruits and veggies, pot roast, steak, chicken and fish (for the non-vegans). And, there are prepared gluten-free foods, too.

I'm fortunate in that I can eat chees and yogurt, although I still can't tolerate ice cream or milk.

I've only had this disease for 4 months, and have been quite overwhelmed with all the dietary changes. But, with support from my friends and family, I've learned to adjust quite nicely. And, this forum has also helped me -- alot.

Also, if you do have celiac disease, it's my understanding that you will not absorb the nutrition, iron or calcium you need if you continue to eat gluten-containing foods. And, you risk other GI problems, not to mention trigger other autoimmune diseases. Not sure - check with your doctor.

By the way, don't eliminate any glutens from your diet prior to your endoscopy because you might get a false negative. Keep eating your "norma" diet until you discuss the results of this test with your doctor.

Good luck!

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I look at it this way, what if my next presentation of gluten sensitivity is lupus or rhumatoid arthritis instead of the lovely mess of eczema I now have. My grandmother died from lupus. I don't think a donut or piece of cake or once favored fast food item is really worth it for me.

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Would it really do that much damage to cheat once in a while?

Yes. And when you don't have obvious symptoms, I'd argue the risk is higher because you have NOTHING to guage how many accidents you have. Not adhering to a gluten-free diet increases your risks of developing lymphoma, intestinal cancer, other autoimmune diseases, and - at the end of the day - increasing your risk of dying early. It's one of the reasons why it affects health insurance and life insurance prices.

You may find, over time, your reactions get worse, nutritional deficiencies crop up, and your overall health, while not awful, is not as good as it could be.

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What happens if you don't stick to the gluten-free diet? You die a slow, tortured death. I wish I could say "just kidding" with that statement, but sadly, it is true. Cheating even occasionally sets you up for horrible, painful illnesses and cancers. It shortens your lifespan. It robs you of your memory and ability to think clearly. Stay on gluten until your endoscopy is done, then try being gluten-free for 6 weeks with no cheating. If your biopsy is positive, stay on the diet. If you feel better and healthier, stay on the diet. When you cheat on the diet, you cheat on yourself.

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It's pretty much like everyone said already... if you have elevated anti-bodies to gliadin your body sees it as a poison. If you keep injesting it, it could fatally harm you.

Ultimately, it's a choice you have to make... just like smoking, drinking, doing drugs... people know it's bad for them but they choose to do it anyways.

The choice will be yours to make, just realize that you are hurting yourself in the end. I mean why would anyone choose to do something that could give them cancer?

I am sorry that this is happening to you and yes, denial and anger will be a part of the whole process for you... Just take it one day at a time and know that your diligence will be worth it in the long run!

Priscilla

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Thanks so much for your posts. This is the reality I have to hear.

I think it would be easier for me to go gluten-free if the damage was more tangible. I don't get sick every time I eat gluten. Not even half the time. If I got sick every time, then the temptation to cheat wouldn't be there because I would know that I would be "punished" every time I ate gluten. But, it's harder to imagine giving up pizza, bread, pasta, etc because of damage that I can't see or feel. You know?

What makes it worse is that I'm a very picky eater. Basically all I eat is pasta, bread, and pizza. I don't like meat or vegetables. I guess fruit, yogurt, and salad are ok but I can't live on those three things. The thought that I'm most likely going to have to start eating meat and other boring things like rice makes me sick. It's really so depressing.

Half of me thinks, why should I live my life miserably, denying myself the only food I like just because some day I might get cancer if I don't? I could eat 100% gluten-free and then get hit by a car or get breast cancer. So, shouldn't I just be happy and eat what I want within reason?

But, then the other half of me says that--yeah, I could die any day from something else, but if I don't go gluten-free my chances for cancer are increased and if I ended up with stomach cancer because I didn't want to give up the foods I liked, that would be very selfish of me because I have a son and I wouldn't want to leave him motherless. :(

I'm just so depressed.

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I went through grieving about the foods my daughter would not be able to have - from being mad, to why my daughter?, to depressed. Like you, it seemed that all she willing, eagerly ate contained wheat (think about a 2 yr old diet - mac & cheese, pasta, goldfish, crackers, cookies, etc) She feels so much better and we have found good gluten-free foods - it doesn't bother me anymore. It slows me down some and forces me to plan, but we are also eating healthier overall After your endoscopy, try some Corn spaghetti; our entire family enjoys it. Good luck and good health.

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I agree with all the above ~ also, I was told early on to think of eating gluten to be the same as eating rat poison. Would you eat that??? You may not "see" or "feel" symptoms every time you "cheat", but your body is getting the damage none the less. Plus ~ life is more than food!! :)

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You never know, when you become gluten free, you might feel so much begter that you'll actually like the new foods. It's not just loosing the foods you love, it's learning a whole new way of eating, shopping and subjecting your family to a new diet - or preparing two distinct types of food.

My husband and I have separate toasters in our kitchen because of cross contamination issues. You can't "double" dip in the jam, i.e., someone making a regular sandwich puts the knife in the jam twice, thereby contaminating the jam for you. Our kitchen is divided in two = his prep area and mine. Then there's the cooking utensils -- there's a lot to learn.

It's overwhelming, I know. Denial feels like a safe place, but in reality, it's a very dangerous place to be. Learning how to switch to a gluten free diet is something like eating an elephant - you do it one bite at a time.

If/when you become gluten-free, you will notice that "slips" will be more noticeable. Right now you aren't reacting everytime you eat gluten-containing food. After you switch, youi just might.

Thanks goodness we have the Internet for research purposes, the forum to chat with others with celiac disease, and stores like Trader Joe's and Whole Foods to help us with gluten-free items. And, there are support groups if you search for one in your area. Not sure where you live, but there's going to be a conference at Stanford at the end of October. It's geared to cover all the subjects needed to cover most of the issues we face.

Hang in there, you'll do just fine. By the way, there is rice pasta and other substitutes to your favorite foods. There are solutions.

Take are,

H.

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Looking back I can see I had been experiencing some celiac symptoms for at least five years but without knowing anything was really wrong. My reward for continuing to eat gluten (because I didn't yet know I had celiac disease) was an 11-day stay in the hopsital, a $40,000 medical bill (mostly paid by insurance, thank goodness), off work for 10 weeks, and nearly a year to completely recover. Even now three years later things aren't always right. I'm lucky I haven't developed other, and much more serious, autoimmune diseases.

I know another person who was rushed to the hospital in cardiac failure because she was no longer absorbing the vitamins and minerals needed to live. My parents know a man who died of malnutrition from undiagnosed celiac (they found it at the autopsy).

I'm proof you can do it despite not having terrible reactions. I've made a few obvious mistakes that I know of and had no real reaction. Minor contamination doesn't cause me pain. I suspect, though I don't know for sure, that I could eat a sandwich or pizza and be fine. But in three years I've never once cheated on purpose.

If you have celiac and you continue to eat gluten, it will catch up with you in a big way. There are so many really delicious foods that don't have gluten.

richard

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There are many delicious foods that are gluten-free. To satisfy my pasta cravings, I eat Ancient Harvest quinoa pastas and mix my gluten-free flours for pancakes. I don't eat breads, I haven't been able to come up with a good one that takes no eggs and no rice. Instead, I make baking soda biscuits. It works for me. I am learning to develop my palate for other tastes. I have to follow this diet for the rest of my life, so I must learn to eat other foods. I love my whole foods store, they know me and they are wonderful, friendly people. I have to drive 40 miles to get there, so I only go once a month, but it is well worth the trip!

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Anyone know of a good store for gluten free items in Omaha? I live an hour away, but do end up going that direction at least every other week or so. Any help would be appreciated! Thanks!!

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You will find foods that you do like to eat that are gluten free. It does appear to be true, from the anecdotal experience around here, that you'll become less dependent on carbs after going gluten-free. (There's almost a sort of addiction with them...)

But for other replacements, you can use rice/corn/potato/bean/quinoa based pastas. You can still have pizza, either with a homemade crust or a store-bought frozen rice-based crust. And rice doesn't have to be boring... You can make risotto with mushrooms and onions. You can make long grain rice with pasta sauce served over it. You can make sushi rice (complete with sugared vinegar) and serve cold with avocado, crab (real, not immitation) and cucumber for an unrolled California roll. You can make a wild rice/brown rice combination with italian seasonings, mushrooms, onions, carrots, celery, zucchini, carrots, and salt to use as turkey stuffing (sausage optional).

Beans, corn, potatoes, sweet potatoes, and so forth can also provide plenty of carbs, if that's what you like to live off of. :-) Don't assume that, because you're picky, you won't find any other foods you like. (My husband is a very picky eater, and would eat bread and meat for the most part, but he discovered he liked Chinese food. His tastes have expanded, albeit quite slowly, over the past eight years by him being occasionally somewhat willing to humor me by trying a new food. Most of the time he doesn't like it, but occasionally, we find something he likes.)

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I'll add my two cents -

I almost wish occasionally that I had a gluten reaction. I never had any GI symptoms before diagnosis and still have no idea when I accidently eat gluten. But, having said that, I am gluten free and know that my health will be better in the long run. I know that I have made gluten mistakes. I have to depend on my lab values to tell me how I am doing. It has been almost a year now and I am no longer anemic (for the first time in my adult life) and my antibodies are in a normal range.

It was a hard adjustment for me and I definitely grieved the loss of favorite foods. But I am a all or nothing kind of person and I have committed to being gluten free. I know that if I cheated just once it would take me months to get back on the straight and narrow.

Lee Ann

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It's all about choice and gaining the knowledge to make the right choice. I have found that if I don't stay clear in my mind as to what are my best choices for meals then the next day I do feel depressed and sometimes a bit of joint pain.

I have been sick for a long time and not having pain is a great stimulator for staying clear of gluten.

Stay with the message board, there is so much to learn and so many people who are going through the same thing as you.

Melissa

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I was diagnosed on June 28.It may be a shock to have celiac disease but before I knew I had it I was told I had Crohn's Disease or Colitus. These would be much worse since they involved surgery and lasting effects post surgery. It was nice to know I could recover from the horrible fatigue, anemia, diarrhea, etc. I found a great health food store with a gluten free bakery in my city and have been buying pies,rice pasta, butter tarts, cookies etc. I was so glad I could eat chocolate but I found out I couldn't eat Lindt chocolates because of the malt ingredient. That was awful! I am still looking for other imported chocolates...Godivas are ok and other chocolates like Aero bars are ok. I have also baked pies from a receipe on internet...My family said the pies were 10's on a scale of 1-10. I found the only breads I bought that I like were made by a company called Kinnekinek (a company from Alberta, Canada). I can't get this bread in my city so I may end up making biscuits. Pancakes taste just the same when you mix up rice flour,bean flour, quinoa, tapioca flour, soya flour etc. and make them yourself...same with muffins. I got a brownie mix and put apples/peaches in the centre and it has been my daughter's favourite above anything she's ever had with wheat. Life is not over with celiac disease..its an adjustment for sure. You can get restaurant's to make you something if you press the issue...My favourite Chinese restaurant made me something gluten-free just for me. Check your area for restaurants with gluten-free menus. I found 3 restaurants with gluten-free items and a pizza place that makes gluten-free pizza. Think of it as a new adventure and a challenge that you can overcome. You will be able to eat almost everything again but in a new way! :D

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Killarney--

My symptoms were sporadic as well, but you have to bear in mind that, as Tiffany said, even though you may not be exhibiting symptoms, your intestines will still show damage. Please be careful. I'm sure that you want to live a long, healthy life, and becoming completely gluten-free will definitely enhance your quality of life.

Best of luck,

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I just rad the ladys letter that went 5 years withCD and not knowing what was wrong. I know what she wAS GOING THRU THAT 5 YEARS. i WENT 9 YEARS. Yes 9 years.I have the skin type celiac disease. The terrible itching is what sent me to the many, many Doctors. Then it got yo the point of breaking out with the terrible bumps, blister type on my arms, knees, shoulgers,etc. Yopu would cratch tyhem then they would turn intro sores. You talk about something ugly this is something else.

My daughter is a nurse practictioner in the twin ciuty area in Minneaplos area.

After all of the Doctors i went to to find out what i had it was she that gave me the answer, over the net. It is time these Doctors wise up I have been on a GL free diet for several months now and it is getting better.

i'.m sure i have a long row to hoe b 4 i will get it to where it is well on the road of recovery. I,m no younster either i'm 78 years old .Any others that have had this diagnosis problem???

Harpo

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Godiva's official policy is that NONE of their products is gluten-free because of possible cross contamination. Unless they've changed recently, they wouldn't even discuss which of their candies they don't purposely put gluten in. I'd be delighted to hear they've changed that policy.

richard

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Lovgro, that is bad news about Godiva...are there any Belgian/Swiss chocolates that are gluten free? :unsure:

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Don't know about Belgian/Swiss chocolates. Is Ghiradelli? Much of theirs is gluten-free.

The frustrating thing about Godiva is you know the vast majority of what they make is gluten-free -- probably everything they make except the obvious stuff. If they'd tell us what is and isn't with the contamination disclaimer then we can make our own decisions about the contamination issue.

richard

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Hi-

But, it's harder to imagine giving up pizza, bread, pasta, etc because of damage that I can't see or feel. You know?

My son is in the process of being diagnosed. I am grieving for him as well. I have vowed to learn how to make all the foods he might miss, in a new safe way. Don't long for things- try to satisfy yourself with a gluten free pizza, etc. Best wishes.

Sharon

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"But, it's harder to imagine giving up pizza, bread, pasta, etc because of damage that I can't see or feel. You know?"

The gluten free pizza, bread, and pasta I eat tastes just like the real thing. I can't tell the difference between wheat pasta and gluten-free pasta and I actually find gluten-free pizza better than the regular. It's really good. All of the foods that I eat taste like the real thing, I hardly even notice anymore that I am gluten free. If you want to know some good brands email me at glickman89@hotmail.com

And if you're curious, McDonalds fries and burgers without buns are gluten free. : )

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