Cant Stop Eating Gluten, What To Do?

taradorff · July 5, 2010

I was diagnosed with celiacs disease a few months ago and July 23rd I've gotta go and get more tests done to look at my intestines I think. I just cant stop eating gluten, I now its harmful and I need to stop but I cant. I dont even know where do I even start? What happens if I wanna go out to eat, what do I order? How does everyone else do it??

sandsurfgirl · July 5, 2010

On 7/5/2010 at 4:45 PM, taradorff said:
I was diagnosed with celiacs disease a few months ago and July 23rd I've gotta go and get more tests done to look at my intestines I think. I just cant stop eating gluten, I now its harmful and I need to stop but I cant. I dont even know where do I even start? What happens if I wanna go out to eat, what do I order? How does everyone else do it??

I'm going to try to scare you straight. You MUST stop eating gluten. For celiacs gluten is poison. It's not LIKE poison it IS poison. Every time you eat gluten your immune system goes into overdrive and causes destruction in your intestintes which further destroys other parts of your body.

There is a member on here who was undiagnosed for years and wanna know what finally happened to her? Her intestines blew a hole in them and she ended up flailing on the floor in a restaurant. Good thing she found out what it was causing it because otherwise she wouldn't be with us. She now has an ostomy bag attached to her side to collect her bowel movements and it's hell to live with. Hopefully it will be removed because for some people it's permanent.

Another of our beloved members go lesions on her brain similar to MS and she now has ataxia due to untreated celiac. This means she stumbles when she walks like a "drunk person" in her words.

If you do a search on here for neurological effects of celiac it will scare the crap out of you.

And then there's the higher risk of cancer and other autoimmune disorders. Many of us have hypothyroid, etc because of our undiagnosed celiac disease.

Now for the pep talk. YOU CAN DO THIS. Get gluten free substitutes. Betty Crocker makes amazing brownies, cookies and cake mixes. Ghirardelli cocoa powder is gluten free and the frosting recipe on the back of the can is to die for.

Gluten Free Pantry makes a Basic White bread mix that is so "normal" and yummy. It's easy to make too. Their French Bread and Pizza crust mix makes pizza that my gluten eaters LOVE.

Glutino makes amazing pretzels and gluten free candy bars. Their chocolate wafer cookies taste like Twix.

Look at old threads here on this site. Read in Coping With and Restaurants and Post Diagnosis. Use the search function to find old threads on questions you may have. Read as much as you can on here. Then go out and investigate your local stores. If you have Whole Foods or Sprouts nearby go see what's out there.

You won't know what to do with all the energy you have once you are healed. I wrote a novel after getting better from this diet!!!! It will change your life in profound ways. I just posted a thread in Coping With about how it has changed my personality for the better.

Now go do this!!!!!!

kareng · July 5, 2010

If you are getting your endoscopy, you probably should continue eating gluten until then. Look around on this site. Just read every new post each day and that will give you lots of ideas to start with. The biggest issue for me has been that you have to really plan your food. You can't just grab something any place to eat.

GFinDC · July 5, 2010

What SSG said.

Also, forget about eating out for a few months. You are far better off fixing your own food at home. Don't buy any processed foods at all. Even gluten free ones. Make all your meals from scratch with limited spices, and no spice blends. Do a search on the top 8 food allergens and consider eliminating all of them for a few weeks and then adding them back in one every three days.

Keep it very simple to start with and and learn to cook rice and quinoa dishes with veggies and a meat.

Check all your meds, vitamins, and anything you drink for gluten and soy and dairy.

You should eliminate dairy for a few months also.

RiceGuy · July 5, 2010

On 7/5/2010 at 6:16 PM, kareng said:
If you are getting your endoscopy, you probably should continue eating gluten until then.

Yep! As unfortunate as it is, all the tests basically require you to continue eating gluten, otherwise the results will be negative regardless. The general rule is to be eating gluten for at least six weeks prior to the test (Enterolab claims accuracy up to a year gluten-free, but it seems there's disagreement on their validity).

But once testing is done, definitely go 100% gluten-free, nothing less. You might be very surprised how easy it is once you get there. But for some it does take more effort to abstain at first. The fine members of this board can help you get through it. Don't despair! You can do this!

Rebecca Madrid · July 5, 2010

I am in a similar position,

I have been gluten free for 6 months and due a a very misinformed doctor, I have to be tested again. I'm currently 5 weeks from my endoscope, and I have been eating very small amounts of gluten for a few days. All the symptoms are back minus the violent vomiting, The depression, fatigue, mind fog, severe cramps and bloating, just as they were before.

A nutritionist recommended Gluten Digest (Open Original Shared Link) to me for help with the symptoms as I really have to eat more than traces of gluten or the test will be invalid.

Will this help the symptoms? Will it make the test invalid? Will it cause any other damages?

Any help is greatly appreciated.

Rebecca

sandsurfgirl · July 6, 2010

On 7/5/2010 at 7:53 PM, Rebecca Madrid said:

I am in a similar position,

I have been gluten free for 6 months and due a a very misinformed doctor, I have to be tested again. I'm currently 5 weeks from my endoscope, and I have been eating very small amounts of gluten for a few days. All the symptoms are back minus the violent vomiting, The depression, fatigue, mind fog, severe cramps and bloating, just as they were before.

A nutritionist recommended Gluten Digest (Open Original Shared Link) to me for help with the symptoms as I really have to eat more than traces of gluten or the test will be invalid.

Will this help the symptoms? Will it make the test invalid? Will it cause any other damages?

Any help is greatly appreciated.

Rebecca

Why did you go gluten free in the first place and why are you repeating tests? There is no way in hell I would go back on gluten for a test. That's crazy. What's wrong with the tests you took in the first place? The reason I ask is that many if not most doctors don't know how to interpret the results. If you get a positive on any of the 5 blood tests that's a pretty good indicator of celiac even if it's slightly positive. If your endoscopy just slows blunting not total destruction you have celiac.

If you have only positive on endoscopy or only positive on blood test that's a postive. You do not need to be positive on both. I got diagnosed based on blood tests only.

I would sooner eat glass than eat gluten to get another celiac test. If you feel better off gluten and eating it is making you feel like crap then that's also a valid indicator of celiac. Heck let them call it gluten intolerance. The point is gluten makes you sick and you can't eat it. Tell that idiot doc to go shove some wheat bread up his nose.

Skylark · July 6, 2010

Taradorff, eating gluten is very damaging to celiacs. Sandsurfgirl didn't mention the biggest risk, which is a rare form of intestinal cancer. How do we do the diet? Start easy. Veggies, fruits, plain nuts, rice, potatoes, meats you cook yourself, gluten-free breads or baked goods from a health food store. If you want to go eat out, you find a list of restaurants in your area that offer gluten-free food and choose from those. Yes, it's a little restrictive; however, food is hopefully not the only thing you live for.

Rebecca, what exactly is the point of getting more tests? DPPIV is useless. Don't waste your money. It's a pseudoscientific scam and it will not help you. There is nothing eating gluten will tell your doctor, other possibly confirming what you already know - that you can't eat the stuff. If there is persistent damage on biopsy it will show up gluten-free. I can understand getting a firm diagnosis for people who don't want to give up gluten, or people with silent celiac disease, but a gluten challenge on someone who is strongly gluten intolerant is unnecessarily dangerous. It's OK to tell your doctor "I'm sorry, I can't eat this".

Tina B · July 6, 2010

On 7/5/2010 at 4:45 PM, taradorff said:
I was diagnosed with celiacs disease a few months ago and July 23rd I've gotta go and get more tests done to look at my intestines I think. I just cant stop eating gluten, I now its harmful and I need to stop but I cant. I dont even know where do I even start? What happens if I wanna go out to eat, what do I order? How does everyone else do it??

Even if you are more tolerant than most and can eat a small amount without getting symptoms you are doing damage to your intestines. You put yourself at a very high risk for intestinal lymphoma which is a cancer and is FATAL. No cake or pizza in the worth is worth that to me. I now people who have been diagnosed and because their symptoms are mild or vague they don't follow the diet but they will be sorry later.

sandsurfgirl · July 8, 2010

On 7/6/2010 at 6:12 AM, Skylark said:
Taradorff, eating gluten is very damaging to celiacs. Sandsurfgirl didn't mention the biggest risk, which is a rare form of intestinal cancer. How do we do the diet? Start easy. Veggies, fruits, plain nuts, rice, potatoes, meats you cook yourself, gluten-free breads or baked goods from a health food store. If you want to go eat out, you find a list of restaurants in your area that offer gluten-free food and choose from those. Yes, it's a little restrictive; however, food is hopefully not the only thing you live for.

Rebecca, what exactly is the point of getting more tests? DPPIV is useless. Don't waste your money. It's a pseudoscientific scam and it will not help you. There is nothing eating gluten will tell your doctor, other possibly confirming what you already know - that you can't eat the stuff. If there is persistent damage on biopsy it will show up gluten-free. I can understand getting a firm diagnosis for people who don't want to give up gluten, or people with silent celiac disease, but a gluten challenge on someone who is strongly gluten intolerant is unnecessarily dangerous. It's OK to tell your doctor "I'm sorry, I can't eat this".

There are some people on here who had significant damage during their gluten challenges and scary things happened to them. My doc wanted me to stay on gluten to "confirm" the positive results of my blood tests with a biopsy. I told her forget it. I went gluten free the day I got the blood test results and never looked back.

SoFLO · July 11, 2010

I too thought I couldn't go gluten free. It's not an easy transition which is why I joined these forums. I got diagnosed as a junior in high school and stayed relatively gluten free until freshman year in college. I pretty much went on rebellion and ate away whatever I pleased foolishly (the food they serve at my college and at parties is NOT gluten free). I'm paying for it this summer. I'm back on my diet and plan on staying for good. I look at BK and McDonald's with disgust now, I can't even walk inside because I hate the smell. Like others have stated, this is your health which takes precedent over everything else. You have to change your mind state because you can most definitely do it (coming from the biggest junk food eater ever).

RachelisFacebook · July 31, 2010

Well, I got the gluten scared out of me with this post. I'm the same way, I've had celiac since April, and I'm not very dedicated to it AT ALL. Until now!!!! Wow. This is some scary crap that can happen to us. O_o

GFinDC · August 1, 2010

Well, there are also all the associated conditions, or related conditions that celiac people tend to get more often. Other autoimmune disease that we get more often than other people. Those aren't exactly fun things. Like RA, diabetes, Hashimoto's thyroiditis, etc etc etc... Just try searching on "celiac associated condition" or "celiac related condition" to find lists. It's not hard information to find.

VitaminDGirl · August 9, 2010

I love this thread. I'm so glad you more experienced one took the time to respond. People like you will help newly diagnosed ones like us get into it!

I'm not officially diagnosed yet, but with my gluten levels so high as they are, I will officially be coming off of it when testing is over.

You all are helping me to look forward to it, and to all of the good I'll be doing my body. And my loved ones will be thankful for it--even if they can't understand why I make it so imp. to leave out the gluten!

Thanks again, all.

debnak · August 25, 2011

On 7/5/2010 at 5:41 PM, sandsurfgirl said:
I'm going to try to scare you straight. You MUST stop eating gluten. For celiacs gluten is poison. It's not LIKE poison it IS poison. Every time you eat gluten your immune system goes into overdrive and causes destruction in your intestintes which further destroys other parts of your body.

There is a member on here who was undiagnosed for years and wanna know what finally happened to her? Her intestines blew a hole in them and she ended up flailing on the floor in a restaurant. Good thing she found out what it was causing it because otherwise she wouldn't be with us. She now has an ostomy bag attached to her side to collect her bowel movements and it's hell to live with. Hopefully it will be removed because for some people it's permanent.

Another of our beloved members go lesions on her brain similar to MS and she now has ataxia due to untreated celiac. This means she stumbles when she walks like a "drunk person" in her words.

If you do a search on here for neurological effects of celiac it will scare the crap out of you.

And then there's the higher risk of cancer and other autoimmune disorders. Many of us have hypothyroid, etc because of our undiagnosed celiac disease.

Now for the pep talk. YOU CAN DO THIS. Get gluten free substitutes. Betty Crocker makes amazing brownies, cookies and cake mixes. Ghirardelli cocoa powder is gluten free and the frosting recipe on the back of the can is to die for.

Gluten Free Pantry makes a Basic White bread mix that is so "normal" and yummy. It's easy to make too. Their French Bread and Pizza crust mix makes pizza that my gluten eaters LOVE.

Glutino makes amazing pretzels and gluten free candy bars. Their chocolate wafer cookies taste like Twix.

Look at old threads here on this site. Read in Coping With and Restaurants and Post Diagnosis. Use the search function to find old threads on questions you may have. Read as much as you can on here. Then go out and investigate your local stores. If you have Whole Foods or Sprouts nearby go see what's out there.

You won't know what to do with all the energy you have once you are healed. I wrote a novel after getting better from this diet!!!! It will change your life in profound ways. I just posted a thread in Coping With about how it has changed my personality for the better.

Now go do this!!!!!!

Thank you SO much for your scary pep talk. I was diagnosed a few years ago but can't seem to stop eating gluten. I always tell myself that I've hurt for 43 years and that I wouldn't know any different so why stay off gluten...?? You're post really snapped me into reality. Thanks again!!

August 30, 2011

Avoid eating out as much as possible...and be careful when shopping, be patient in reading the labels. Ask when in doubt. When I first decided to go on a gluten free diet, the first thing I did was eliminate stocks containing gluten in the fridge and in the kitchen. I convinced my house mates to keep theirs where I can't see it. They found it funny but it worked. These are simple things but helped me a lot.

nutzieone · August 31, 2011

On 7/5/2010 at 5:41 PM, sandsurfgirl said:
I'm going to try to scare you straight. You MUST stop eating gluten. For celiacs gluten is poison. It's not LIKE poison it IS poison. Every time you eat gluten your immune system goes into overdrive and causes destruction in your intestintes which further destroys other parts of your body.

There is a member on here who was undiagnosed for years and wanna know what finally happened to her? Her intestines blew a hole in them and she ended up flailing on the floor in a restaurant. Good thing she found out what it was causing it because otherwise she wouldn't be with us. She now has an ostomy bag attached to her side to collect her bowel movements and it's hell to live with. Hopefully it will be removed because for some people it's permanent.

Another of our beloved members go lesions on her brain similar to MS and she now has ataxia due to untreated celiac. This means she stumbles when she walks like a "drunk person" in her words.

If you do a search on here for neurological effects of celiac it will scare the crap out of you.

And then there's the higher risk of cancer and other autoimmune disorders. Many of us have hypothyroid, etc because of our undiagnosed celiac disease.

Now for the pep talk. YOU CAN DO THIS. Get gluten free substitutes. Betty Crocker makes amazing brownies, cookies and cake mixes. Ghirardelli cocoa powder is gluten free and the frosting recipe on the back of the can is to die for.

Gluten Free Pantry makes a Basic White bread mix that is so "normal" and yummy. It's easy to make too. Their French Bread and Pizza crust mix makes pizza that my gluten eaters LOVE.

Glutino makes amazing pretzels and gluten free candy bars. Their chocolate wafer cookies taste like Twix.

Look at old threads here on this site. Read in Coping With and Restaurants and Post Diagnosis. Use the search function to find old threads on questions you may have. Read as much as you can on here. Then go out and investigate your local stores. If you have Whole Foods or Sprouts nearby go see what's out there.

You won't know what to do with all the energy you have once you are healed. I wrote a novel after getting better from this diet!!!! It will change your life in profound ways. I just posted a thread in Coping With about how it has changed my personality for the better.

Now go do this!!!!!!

I dont think I've ever read a better description of why you should keep to a gluten-free diet! Well said! Sandsurfgirl is 100% right, you MUST stop eating gluten however if you are getting an endoscopy wait until after that before you do or the results may prove to be a false negative! I dont understand why people would continually eat gluten when they know it makes them sick! I was sick for years before finally getting diagnosed by a fluke! I had a seriously low Vitamin D level and was treated for that for over a year before they realised that was not the main problem! I now avoid gluten like like it was the plague! I would not purposely make myself sick. I have been "glutened" quite a few times by accident, either because of my own stupidity or laziness or by a friend who didnt realise something had gluten in it and afterwards I feel so ill! Why oh why would anyone continually make themselves sick!? I dont get it!!!

nutzieone · August 31, 2011

On 7/6/2010 at 4:08 AM, sandsurfgirl said:

Why did you go gluten free in the first place and why are you repeating tests? There is no way in hell I would go back on gluten for a test. That's crazy. What's wrong with the tests you took in the first place? The reason I ask is that many if not most doctors don't know how to interpret the results. If you get a positive on any of the 5 blood tests that's a pretty good indicator of celiac even if it's slightly positive. If your endoscopy just slows blunting not total destruction you have celiac.

If you have only positive on endoscopy or only positive on blood test that's a postive. You do not need to be positive on both. I got diagnosed based on blood tests only.

I would sooner eat glass than eat gluten to get another celiac test. If you feel better off gluten and eating it is making you feel like crap then that's also a valid indicator of celiac. Heck let them call it gluten intolerance. The point is gluten makes you sick and you can't eat it. Tell that idiot doc to go shove some wheat bread up his nose.

once again I totally agree with SSG! It is ridiculous for your doctor to even consider asking you to go back on gluten for tests. I've had 3 endoscopies, the first one diagnosed the celiac disease, the second was a few months later to see how my gut was healing and the third was a few months after that to see again how I was healing. Due to the fact that I had celiac disease for so long and was undiagnosed I now have a horribly damaged gut. It may never heal but I have never been told or asked by any of my team to go back on gluten for any test.

Please keep yourself gluten-free, if you are being told to go back on gluten for tests, you need new doctors!

Poppi · August 31, 2011

I will add to the scary pep talk.

Looking back now I know I have had celiac since I was a small child. Undiagnosed for 34 years. I have been absolutely religious about the gluten free diet for almost 6 months now and my life is so much better, I feel amazing! I can walk past a bakery or my old favourite restaurants with barely a pang. It's not always easy, I found myself out and about with the family the other day, starving and unable to find anything safe to eat and that was very upsetting but it was the result of poor planning on my part, food spontaneity is a thing of the past.

That was the good part, here's the crappy part.

Celiac has left me with:

Almost no cartilage in my toes, my pain level has dropped by at least 90% since going gluten-free but I will need several surgeries on my feet in my lifetime to fuse joints.

Extensive nerve damage in my neck and upper back. I have very painful physio visits once a week where I have needles inserted into the tightened muscle bands in an attempt to alleviate the constant pain and restore my range of motion. It hurts, it's expensive and it will never give me a normal neck and back, just make it less painful to do normal tasks.

An unfinished biochemistry/environmental science degree because I was so distracted, sick and exhausted when I was in college, now that I have 3 kids I will likely never finish that degree. My oldest starts college in 2 years so his education is more important.

A high risk of digestive system cancers. My grandfather (who we now are positive suffers from undiagnosed celiac - he's 90) has had bowel cancer, stomach cancer, bladder cancer and pancreatic cancer. I am scared that this will be my future.

3 miscarriages, horrible and dangerous high risk pregnancies and infertility. My body killed three babies because of this disease. I am so lucky and blessed to have my three children but the three I lost broke my heart. I think about them every day and wish I had been diagnosed before I tried to start a family. Even though we were successful in having kids the years of infertility and loss were more horrible than I care to describe right now. If you ever want to have a family you need to take this seriously.

My life is amazing now but I lost a lot to this disease. I consider myself lucky though, there are so many people on this forum who have suffered much more terribly than I have. You don't want to be one of them.

Takala · August 31, 2011

Cravings are caused by malnutrition - if you are having trouble sticking to it, get on those gluten free vitamin B complex, a multivitamin, and calcium and magnesium. You may also have to switch into a lower carbohydrate, higher protein and fat diet than is typical for Americans, especially females brainwashed to eat "low fat." It is better to be taking in a bit of fried food or some coconut milk or nuts, than to repeatedly break your diet and start the malnutrition cycle and the sugar spikes and crashes again and again, resulting in more gluten cravings.

I'm one of the ones who had the ataxia and neurological issues - people have NO idea what I do to make myself "pass" for normal when I am out and about, which is eating a certain way and constantly doing exercises to maintain function. If I did not have an athlete body type to begin with, I would not have recovered somewhat to this extent. But the spinal damage is permanent.

Februaryrich · September 15, 2011

I feel so good on a gluten-free diet that going back is a big NO for me

lovegrov · September 15, 2011

How did I stop eating gluten? Eleven days in the hospital, 10 weeks off work and 10 months to really recover helped convince me.

richard

Goof · September 15, 2011

Once you do go gluten free, you won't want to go back! I felt a difference within a week, though I know from being on the boards here that is an unusually short amount of time. I'm not exhausted all the time anymore, I don't have mood swings, my appetite has come back with a vengance, and my GI tract functions WAY better. If you have been diagnosed (after the endo), STOP THE GLUTEN!! You will be glad you did. The improvement will be worth it.

There are quite a few books out there, if you are able to get one. I used the "Dummies" series as a starting point. VERY helpful.

I definitely don't eat out as much as I used to, that's for sure. But there are restaurants that are "more friendly" to Celiacs. But at least for a while, until you're healed, try to eat in as much as you can. Just because we're gluten free doesn't mean we have to isolate ourselves.

Also, I've been trying the last few weeks to train my brain to control my body, not my body controlling my brain. i.e. we had a cake here a few weeks ago at work for someone who was getting married. It looked SOOOO good, and I started craving it as it got passed right in front of me. But I knew what it would do to me. So I went and got myself a nice gluten-free snack, so that I could knock out the temptation with something that wouldn't hurt me. What you eat is all in your head. If you can think about food the right way, you will eat the right way!

Whatever you do, though, don't get overwhelmed!! That will be your worst enemy. It's easy to think that this is too hard, and it's not worth it. I've had that same thought. But it is worth it!!!! (!!!!a few extra never hurt ).

NicoleR · October 5, 2011

I'm an undiagnosed/self-diagnosed person. However, the way I discovered this was because my diet tends to be low in grains anyway. The last three times I had a sandwich I had aweful constipation/diarhea/bloating/cramps/flatulence that only relieve the stomach for a second and then it built up again and I felt like S***, again. I knew of people who couldn't eat grains because I've met some at Shabbos meals and Passover they would be somewhere with their own matzah. So, I did some googling to see that I had a lot of the same symptoms: leg cramps and more. I think I've had this for a long time and I think my mother had it. She used to get really bad charlie horses in her legs and died of diabetes, high blood pressure and stroke issues.

I eliminated grains about a month ago, but ate a Turkey TV dinner without thinking and then realizing I was eating stuffing. Sure enough, I got the runs 20 minutes later.

Anyway, just eat meat and veggies. Going to a pizza place with be a problem but if your friends pick one out, maybe the menu will have fish and veggies. I'm not lactose intolerant. I eat yogurt when I'm trying to boost my calcium and I never have a problem, but a lot of people are lactose intolerant, too.