Bad Girl Story

[Spygirl]

I am a bad girl and there is no excuse. I am 37 and was diagnosed at age 9 in 1980. I spent 3 years on "the diet" and at age 12 started "cheating". Although there were several literal near death experiences pre-diagnosis as a very young child, I didn't always feel ill after I started cheating. I still knew I was damaging myself and frankly, didn't care. I continued this way until age 22 when, for the first time since pre-diagnosis childhood, I became very very ill while pregnant with my second child. This scared me enough to eat right for about 4 years. Then, I "fell off the wagon" again. A few years ago I started to eat properly and found out about hidden gluten used on processing but not listed as ingredients on labels. I contacted a gentleman who played a part in the local Celiac Assoc when I was first diagnosed and enquired. His answer was "if it comes in a bag/box/jar or can, you can't be safe, avoid all processed foods". All this did was send me straight to all my fav foods with the bad attitude of "I'll eat it till I can't take it anymore" Well, that didn't happen. I felt fine and had/have normal BMs. Even tho I was exremely ill as a child pre-diagnosis, as a teen and adult, I didn't really feel sick. Despite this, I KNEW the damage I was causing so a couple of months ago I gave myself a birthday present, bought an 8 dollar gluten-free brownie mix and started eating right again. There is absolutely no change in how I feel which makes it very difficult to stay strong. I am not over/under weight, not depressed, not bloated or suffering with lose BMs. I'm hoping this forum can work as a support system. I am the only one in my family with it and even tho it's been almost 30 years since diagnosis I hear things like "it's just a little bit, it won't hurt". I know that isn't true. They are right that it doesn't hurt in the immediate (meaning I'm not running to the bathroom), but the long term will be devastating so I am reaching out to other Celiacs for conversation. Maybe someone out there is like me and has no will power? Please don't get me wrong and think I'm whining about having Celiac. I've had it too long and all feelings of being sorry for myself are long gone. I look forward to all comments and would be very happy to share more of what my body has gone thru in the hopes of helping others, especially newly diagnosed with my experiences of cheating.

[melmak5]

1. Welcome! This is, in fact, a really great place for support.

2. How were you diagnosed as a child? (blood work, endoscopy?)

3. It sounds like you are aware of the basics... even if you don't "feel immediately sick" it doesn't mean you aren't harming your body.

4. Going gluten free (COMPLETELY gluten free) for a few months may make a believer out of you. Even if you are currently digestively asymptomatic, you might be experiencing other symptoms and not knowing. Many peoples' bodies are affected in numerous ways because Celiac Disease is an autoimmune disease.

So ask questions, look around for good substitutes, reconsider your living/cooking space and try to make it work for your new gluten free lifestyle.

Yes it is hard, but you can do it!

[Spygirl]

Thanks for your reply melmark5.

I was diagnosed thru biopsy at age 9. At age 11 I was given a second biopsy which determined oats are ok for me. As far as I know there was no such thing a a simple blood test back then. I swallowed a device about the size of a pencil eraser attached to a wire, it took a sample from my small intestine and it was pulled back out thru my mouth. (gag) All this was done with a camera too so I could see it going down. I remember it was moving too slow so the doctor started talking to me about pancakes and syrop and the thing just zipped on down after that. I suppose the word is endoscopy. This was the 70s and there was no internet and very few (including doctors) who knew anything about it. At age 6 (1977) my pediatrician had an idea food was the problem but by this time I was terrified of anybody in a smock (including hairdressers) because I had been poked and prodded so much. My mother tried to make sure I ate well, following the Food Guide, giving me whole grains etc. She suffered great guilt when I was diagnosed because eveything she was giving me was supposed to be the best; but for me, it was the worst. Between age 6 and 9 I did not grow at all. I still had the bone age of a 6 year old and had a huge belly from the malnutritian. I was referred to Dr. Shipman at Children's Hospital and was immediatly diagnosed. I really do thank God for that man. Luckily he was still practicing when I had my children and he tested both each at 14 months old and are both negative.

Despite those obsticles, my mother was relentless, joined the Celiac Assoc and contacted doctors from all over to learn and now-a-days there is so much more info so I do know everything about it, but I just ignored it. I know that is very immature and stupid because there are so many who go for years mis-diagnosed and would give their left arm for an earlier diagnosis.

Being a-symptomatic IS hard because even tho I feel ok, I know how much damage it does. Sometimes I wish I could have another scare like I had when I was 22 so the damage is more tangible to me. I wish I could get a look at my Villi.

But anyway, I cannot dwell. There is no time like the present!

I am excited by your reply. What about you? When did you find out? What tricks do you use for will-power? Obviously me knowing what will happen if I continue to cheat isn't enough for me so I would be curious to know how you get your will-power?

Thx again.

[Ursa Major]

Even though avoiding all processed foods allows you the luxury of not having to read labels, and you can be sure you are safe, that is not really necessary. So, if you were gluten-free and eating some processed foods (making sure there was no gluten in them), then you would have been doing fine, hence no symptoms.

If you know what to look for in labels, there are a number of foods that are fine. There are several kinds of spaghetti sauce that are safe, most processed plain vegetables are fine, many kinds of canned tuna are okay. The same goes for a lot of other foods.

You need to know what to look for, and you need to read labels. If you aren't sure, you might have to get in contact with the manufacturer, and if that isn't helpful, you can ask here.

You need to figure out how to cook and bake your favourite foods gluten-free, that way you won't feel deprived. Which will make it a lot easier to stay on the gluten-free diet. Almost everything you like to eat can be made gluten-free. And of course, there are a lot of great gluten-free pastas out there.

When I have guests over for meals I serve everything gluten-free. If I cook it, I want to be able to eat it. And nobody knows unless I tell them. That includes gluten-free turkey stuffing, gluten-free Black Forest Cake (to die for), gravy (which I thicken with light buckwheat flour) and everything else. After our large Easter meal (I was the only one of ten people who needed to be gluten-free) my husband told me that the gravy was the best he had ever had!

I've served lasagna made with rice pasta, and everybody loved it. In fact, one of my daughter prefers the taste and texture of rice pasta over wheat pasta!

It is possible to eat very well without gluten, and without being deprived, it is not that hard.

[emcmaster]

Just wanted to pop in to say that I completely understand your position.

I hate admitting this but, I have horrible reactions that last weeks and I still cheat occasionally... although it's down to super infrequently and only after I've been accidentally glutened. This makes me feel incredibly guilty and I beat myself up for it, but it's also hard to take the psychological hit of being so, so careful and still getting sick. Like, if I wanted to feel like this, I would have at least eaten something exciting!!!

It is far easier for me to stay gluten-free because I feel horrible when I don't, so I can't imagine how hard it must be for you. :hugs:

[WendyG]

Wow reading your post ... WE are very similar. I am 36 and was diagnosed almost 6 years ago... I too do not have many symptoms. I am back on the diet for life. Although I don't have symptoms when I eat gluten I am very malnourished. I was severely anemic and my iron stores were a whopping 2. My hair was the biggest reason for getting back on track. It was so thin and icky, falling out and reading on this site I am sure celiac has something to do with it.

I have three children and want to be around for them. We have a really bad family history of colon cancer and I was always worried about that.

Be strong and stick with it. After going gluten free on Jan 28th of this year its getting easier. I have had to adapt my recipes and I don't eat out as much. My family and friends are great and I do feel better. I was at bunco last week and had one bite of taco dip before thinking of the seasoning. I was sick all night with cramps. So I do think after being off the gluten we become aware of how harmful it is. This forum is wonderful. I don't post much but I read posts every day and everyone is so encouraging. You have found a good place.

Welcome!

Wendy

[Pattymom]

It is hard to stay on the diet when youa recraving and don't immediately feel the pain. I have had the same problem with sugar, I can't tolerate any processed sugar (or honey or other sweetners) or my arthritis flairs, and I become seriously depressed, since I discovered this 15 years ago, I have been clear for 2-3 years, then start cheating a little, for a special occasion, then a little more, then since I feel Ok, a little more, until I"m eating chocolate chips out the bag several times a day, then my hands hurt, my feet swell, and realize where I am. Then I start again. It's an addiction, but unlike alcoholism much more socially acceptable.

it has been easier for me not to cheat on gluten, it's been 3 1/2 years, but then I do feel truly awful the few times I've been accidently glutened. On the sugar, not so much easy. Good for you for starting again. Find treats that you can have and indulge.

Patty

[Spygirl]

Hello Ursa!

I have no symptoms. Doesn't matter if I eat whatever I want or whether I cut out gluten, either way, I feel fine. Trust me, I wish I did have symptoms like I used to when I was a kid. This is where my prob is. It's not that I have no clue what to eat. I've been diagnosed for 30 years. My prob is will-power since it makes no diff to how I physically feel no matter how I eat.

I am well aware of how to cook/bake gluten free. I like to use cornstarch, rice or potato flours. I can't say I feel "deprived". It's more a will-power issue with me. It's sooo much easier to get a 99 cent loaf of bread as compared to 9 bucks even if I can get a tax break. And lets not kid ourselves, that loaf of bread is like a brick and doesn't make a very good BLT.

Gluten used in processing is NOT put on the label because it is not an ingredient but a substance used in processing. I always call the manufacturer if I want to have something like yogurt or pop and I can make a killer homemade spagetti sauce without using one thing from a jar/can and it goes will over plain rice but I do like to get the gluten-free pastas too.

With hidden gluten in so much (including some soft drinks but Pepsi is ok), I'll feel better to just stay away from anything in a can/jar. It's healthier to eat fresh anyway.

I was concerned that I was not getting enough fiber and riboflavin etc in my diet so I saw a dietician and she put my mind to rest. Taking out everything processed is not affecting my nutritian intake and I don't need to worry about ever getting gluten accidently.

I was also lucky to find that WalMart carries alot of Glutino products so every now and again I splurge and get a pizza or mac and cheese which cost less than at the speciaty stores. gluten-free beer is a rare treat also due to the cost.

Cakes and cookies are easy to bake but maybe you have a recipe for me bake bread that actually rises and doesn't come out weighing 100 pounds?

I look forward to talking more.

[tarnalberry]

I also don't have a lot of symptoms, but I have some. I figure, though, that I'd rather keep the 10 years off life that you, on average, lose, if you don't adhere to the gluten free diet, regardless of how symptomatic you are. It's a choice. You can choose to eat gluten - you've done it before - regardless of how wise a choice it is for your body, it's a choice that you have the power to make. (You can pick up a gluten-filled doughnut and eat it, regardless of should's, it's possible.) You can also make the choice to be gluten free. You can choose to make the choice once, saying "I will *always* be gluten free" or make the choice over and over every time you eat. There are lots of options to your choices.

For me, I think about WHY I make my choices, or what to make particular ones. Maybe it's something you need to think about understanding first, before making it, because it might be more complicated, on a deeper level.

[melmak5]

My story...

I guess I am "lucky" in a sense because I become violently ill when I get gluten in my system. The first time it happened post-going gluten free, I was in the ER because of rectal bleeding and sever pain. (I had to explain what "celiac disease" was to the ER attending, while having a rectal exam. Yeah, that was a treat.)

Last April I woke up in the middle of the night with sever, sharp chest pains and coughing. The next two days I couldn't down any solid food and started regurgitating everything I ate. This prompted the endoscopy (no biopsies taken, they thought it was something in my esophagus or stomach cancer). Endoscopy "looked fine."

Symptoms included: Excessive Burping

Burping with Regurgitation

Heartburn (especially w/fruit and rice)

Fullness

Very loud abdominal noises

Abdomen pain, distention, bloating (outward pressure)

Sharp stabbing abdomen pain (short, fleeting, inward)

Diarrhea, Constipation

Rectal Bleeding

Headaches

Dizzy

Fatigue

Exhaustion

Brian fog (unable to concentrate)

Hives/rashes

Bumps on wrists/foot (2+ months)

Itching/pain in mouth with fruit

Skin peeling on head/eyebrows

I was a no hot/cold liquids, no crunchy foods, nothing with bubbles, no beans, no potatoes, no spicy food, no tomatoes/citrus diet, no dairy diet. Things did not get better.

I was diagnosed with celiac disease via blood work (at this point I was in the middle of a elimination diet and not eating gluten).

I completely got rid of gluten. Things got better.

Then things got worse.

Cut to 10 doctors and almost a year later...

I have discovered that while not allergic, my body does not tolerate dairy or soy and I have IBS.

(I was on an rx that was helping and I experienced my first pain-free day in almost a year... but sadly had a bad reaction to the meds and had to stop.)

So while not completely "better" here is a list of things I have noticed that are different:

-I can concentrate! I have been able to think clearly and read with comprehension again

-I no longer have to run to the restroom (bathroom trips are 1-4x a day, still too much, but better than when they were 10+)

-I am not longer having allergic-like reactions to food

-I can sleep through the night

-I no longer have tonsil stones

-I can eat a meal and NOT have to unbutton my pants

-I do not have to sleep 13+ hours a night

-My anxiety (which I never really knew I had until it eased up) is almost gone

-I no longer have rings under my eyes

-I started gaining weight (ok, so this isn't "fantastic" but its a sign my intestines are happier)

-I do not regurgitate food!

Please note, I did NOT present like a "typical celiac" but if you read around the site you will find that there are fewer and fewer who do.

For me, I view gluten as "rat poison" and its an analogy I use with friends. Yes, warm baked bread smells amazing (I used to work in a bakery, I KNOW) but I am not even tempted anymore because to me I see pain and suffering, even if it smells good.

What I am trying to say is I do not see gluten-free as a diet, its more of a way of life that allows me to function.

Don't get me wrong, its not easy and the first 6 months I think I can honestly say I was depressed about the whole thing... but most of that was because I was working so hard and not feeling better. But now that I am, I am kind of excited to experiment in the kitchen. (This weekend I made home made marshmallows! Just for kicks)

Please read others stories and reach out for support. When its really rough I would think about my loved ones and say "you know what, I cannot be selfish and eat old pizza and beer because I cannot get sick again, too many people count on me." (I know you said you don't feel sick, but damaging your intestines leads to malnutrition and a serious of other aliments, which others have mentioned.)

Its also true that there is gluten free pizza and gluten free beer out there now. There are more options and there is more awareness.

More than anything YOU CAN DO IT!

*OATS - please note that if you are in the USA, due to how they are handled/processed oats are NOT gluten free

[kbtoyssni]

Do it for your children. Do you want to be around to watch them grow up, go to college, buy their first house, hold their first child??? You'll miss out on a lot of that if you don't stay gluten-free. The best gift you can give your children is to stay healthy and be around for as long as possible.

[curlyfries]

I know I would also find it extremely difficult to stay gluten-free if I had no symptoms. Any time I am tempted to cheat, I remember my mother who died too young of colon cancer. There are many others here with similar stories. That could be you one day. Maybe that is the kind of incentive you need. Hang in there

Lisa

[Sandi*]

Hi, I totally get you! I was just thinking today that I need to write/find a post on cheating and there you came . It's so hard to stay on a gluten-free diet if you have no symptoms! That's understandable. However, I do have symptoms so I have no excuse except for being stupid. My problem is that I haven't been officially diagnosed, just through an elimination diet. I usually don't get sick until a day or two later so I'm always like, hmm, maybe this time I won't get sick! Yeah, right. I would stick to the diet if I had an official diagnosis (I think). Sometimes I'm like, what if I'm just imagining this gluten reaction (my testing from two years ago was negative) and I can eat gluten, hmmm, lets try and eat half a batch of brownies! No wonder I get sick, it could just as well be from simply eating too many brownies at once!

I don't know what to tell you. You DO have a diagnosis and you do know you're damaging your body if you keep eating gluten. You might not be sick now but if you keep damaging your body you might get really sick later, perhaps in only a few years! You're only 37, you still have at least half of your life ahead of you. Don't let this poison (=gluten) ruin it! You can do it!

[ravenwoodglass]

For many years doctors thought that celiac disease was one of those things that people outgrew. One of the reasons for this is because after children heal completely it can take years for the damage to build up enough again for them to be symptomatic again. We now know of course that is not the case. As mentioned the antibodies can attack any tissues you have in your body.

It can be really hard to do this when you don't seem to be symptomatic, but it is important that you do. For example, you may not be having GI reactions but you lymph system can be effected for quite awhile before you would know it. This could lead to you developing lymphoma, not a good thing. It can also mess with your hormone levels sending you into a premature menopause or leading to infertility. Also not a good thing. Also if you are celiac there is a real strong chance that your children will be also. They will need you around to help them through the struggle.

It is important that you continue with the diet. It has to be really hard with no disernable symptoms but you have come to a good place for support and info.

[gfpaperdoll]

Welcome & {{{{{{{Hugs}}}}}}

since you do not have any symptoms please do not eat oats. even if they are not cross contaminated some of us can be damaged by oats...

[sneezydiva]

I am not a diagnosed celiac, though I truly believe had I continued to eat gluten a few more years, I would've has "passed" all those celiac tests. I just don't think I had enough damage yet.

Anyway, even with my awful symptoms, it was a little overwhelming to think about not eating gluten forever. So what I have done is kept a food diary, and at the end of each day's entry I write " X days in a row gluten free" And I rewarded my self when I made it 5, days in a row, 10 days in a row, a month in a row etc... My record is 40 days in a row. Most of the time when I ate gluten, it was a mistake, some gluten in a food I didn't suspect, like soy sauce. But there were a few times I cheated. It's become more of a movtivating challenging game to me. Not to say I don't take it seriously, but something about trying to beat my previous record is just very motivating and uplifting to me. I still reward myself, but the record in and of itself has become rewarding. I remember is Psych class learning about studies they've done with token reward systems. Basically you give out tokens for good behavior that people can turn in for rewards But what ends up happening, is people just hoard the tokens. I think that has happened to me and staying gluten-free. I don't need the reward anymore, I just want to have a super long gluten-free streak to brag about!

[Megra]

I am a bad girl and there is no excuse. I am 37 and was diagnosed at age 9 in 1980. I spent 3 years on "the diet" and at age 12 started "cheating". Although there were several literal near death experiences pre-diagnosis as a very young child, I didn't always feel ill after I started cheating. I still knew I was damaging myself and frankly, didn't care. I continued this way until age 22 when, for the first time since pre-diagnosis childhood, I became very very ill while pregnant with my second child. This scared me enough to eat right for about 4 years. Then, I "fell off the wagon" again. A few years ago I started to eat properly and found out about hidden gluten used on processing but not listed as ingredients on labels. I contacted a gentleman who played a part in the local Celiac Assoc when I was first diagnosed and enquired. His answer was "if it comes in a bag/box/jar or can, you can't be safe, avoid all processed foods". All this did was send me straight to all my fav foods with the bad attitude of "I'll eat it till I can't take it anymore" Well, that didn't happen. I felt fine and had/have normal BMs. Even tho I was exremely ill as a child pre-diagnosis, as a teen and adult, I didn't really feel sick. Despite this, I KNEW the damage I was causing so a couple of months ago I gave myself a birthday present, bought an 8 dollar gluten-free brownie mix and started eating right again. There is absolutely no change in how I feel which makes it very difficult to stay strong. I am not over/under weight, not depressed, not bloated or suffering with lose BMs. I'm hoping this forum can work as a support system. I am the only one in my family with it and even tho it's been almost 30 years since diagnosis I hear things like "it's just a little bit, it won't hurt". I know that isn't true. They are right that it doesn't hurt in the immediate (meaning I'm not running to the bathroom), but the long term will be devastating so I am reaching out to other Celiacs for conversation. Maybe someone out there is like me and has no will power? Please don't get me wrong and think I'm whining about having Celiac. I've had it too long and all feelings of being sorry for myself are long gone. I look forward to all comments and would be very happy to share more of what my body has gone thru in the hopes of helping others, especially newly diagnosed with my experiences of cheating.

It is great that you are going back to Gluten Free! You are worth being healthy! You have to keep saying that to yourself every time

you want to cheat!! I was diagnoised with a biopsy of my insides. It is only coming up on a year, but I feel so much better!!

I had alot of symtoms and no one every thought it could be Celiac. I also have Diabeties and had my thyroid removed in 2000.

Of course all that might have been prevented if ....... I get violetly ill if I get glutened, so no cheating for me!!! Welcome