11 replies to this topic

[Mballerina]

I have found that everytime i eat gluten I begin to binge. My hunger is unquenched. I feel so hungry and nauseous and have a migraine. The only time nausea and the migraines go away it is because I am eating. This has become very horrible and I cannot function. I can predict the whole course of it and it always lasts from 2 to 4 days. I am having sort of an emotional breakdown because I really can't stop it and I can't make it end faster. I feel like a schizo basket case, one day okay and the next a complete desparate depressive.

[mjbennett88]

Hi,
I'm new to this forum and have been reading for quite a while. Newly diagnosed a couple of months ago and I don't seem to have a typical progression. I'm sure the celiac was triggered last April when I was under a tremendous amount of stress with two deaths in my immediate family 1200 miles away from home. I can pinpoint when the symptoms started, but they weren't really anything that dramatic. Diagnosis came when I went in for a checkup and the dr noticed I was anemic and asked what else was going on. She had it nailed on the first try and referred me to a GI guy. Blood test was negative, but the endoscopy was positive.
Anyway, I've been good for a long time, but yesterday I just lost it. I had two social gatherings and just absolutely could not resist cheese and crackers and oatmeal chocolate chip cookies. I was also kind of curious to find out if I would have a reaction since I have not tested it since going gluten-free. The only negative reaction was hardly mentionable. I'm wondering if there are degrees of celiac disease and if this may indicate that I have maybe a "mild" case and may not have to be as careful as some people who have really bad reactions to any gluten at all. That could be wishful thinking and everything I have read would not indicate that it's true, but are some of us maybe more tolerant of gluten thatn others?

[JUDI42MIL]

Mj- all I know is my mom has celiac, and she cheats, eats all kinds of things I could never. I seem to react right away now, if I mess up and get even the smallest amount.In fact I seem much worse now than before I went gluten-free.

[darlindeb25]

not all celiacs have violent reactions to gluten--i dont have a noticeable reaction to barley, but i know it is still in there causing damage --you have to all realize this--even if you dont have a reaction that you can notice--that doesnt mean that the gluten isnt doing just as much damage --we CANT cheat--craving something is natural, but you are the only one putting that food in your mouth--no one else makes you do it--celiacs is not making you eat, you are--always remember--you are your own worst enemy ----i am sure everyone else on this board has craved the things we cant have--i know i have---i want egg noodles with cream of chicken soup in the worst way, but i want to feel good so much more --this is up to you--only you can keep you healthy--you must be strong---i know this may sound like a lecture, i guess it is--only you can take care of you--as long as you cheat, you are hurting yourself and the ones that love you--deb

[clanning]

Mballerina,

I have the same cravings and binges. I've tried baking gluten-free and have failed!! Therefore, I want what I can't have. The hardest thing is.... I want a beer once in awhile.

My husband can tell when I have had gluten. I get real crabby, angry, bitchy, etc.. It will last about a week. I also feel real run down and exhausted. I also get the worst stomache, doubling over, holding my breath!! I don't get violently sick like I did 10 yrs ago or even 2 yrs ago. I still function because I've done it to myself. No one forces us to eat gluten.

Eating gluten only makes me miserable and my family.

I can't tell you that we are wrong for our cravings. We are like little kids, telling somebody that they can't have something seems to only make them want it more. It's hard and all we can do is try.

clanning

[jenni]

I have been gluten-free for 3 years and I haven't cheated once. ( I accidentally ate a part of a flour tortilla when I was told they were corn, but that's it) I have disease "phobia" and the list of cancers and other autoimmune diseases that can be triggered by eating gluten are too long and horrifying for me to even think about cheating. There is nothing that tastes as good as being cancer free feels.

[Rikki Tikki]

I have had the same symptons as you describe usually before I get really sick. I have heard it referred to before as starving stomach, it is the most fierce starving sensation and usually followed by being very ill.
I don't think I have intentionally cheated in over a year because I have found that the price I pay for even a small amount of gluten is not worth the immediate gratification that I would get by eating the food I miss the most.
The hardest part I am having is that I have been unable to put all of the weight on that I initially lost. It seems like the food is so expensive and very hard to find in the small town I live in. Many people will say to order it on the internet but there again it is very expensive.
Lately I have been having instances where my heart will beat very fast and I am very tired. I would like to feel as happy and healthy as I did before I got so sick. It took probably at least 15 years from the time I forst noticied I was ill and couldn't relate it to food poisioning or the flu.
For many years the doctor said that I had irritable bowel and after that I was too embarrased to ask again and it wasn't until a dramatic weight loss that the doctor looked further, if I remember right it was 25 pounds is about a six week period. Several years before the actual confirmation a doctor had said my blood work showed a disease called celiac but that it was so rare that he was sure the blood test was wrong.
Finally the blood test was done again showing positive and I was sent to a GI doctor who did the biopsy that confirmed that it was celiac and the villi was gone.
There are not any support groups in the area where I live and I feel very alone in this.
I am 5'7" and weigh about 112 pounds and believe me it is not attractive, with the women I work with who are trying to lose weight they don't want to hear about or understand my dilema. Any suggestions would be very much appreciated.

[tarnalberry]

Granger,

Well, at least having the correct diagnosis well help. You might want to stock up on nuts and avocados and any other high-caloric density foods you find to help put some weight back on. (You might want to consider weight training - while eating plenty of calories - to add muscle as well.) Sticking with naturally gluten-free foods will help keep the costs down and keep you from having to find speciality stores.

[Rikki Tikki]

Thank-you Tiffany for your information. I am really unclear on what is naturally gluten free. I know fruit and vegetables are but am so lost on what else is. It is just so confusing!
Sally

[glen4cindy]

I will have to add too that I am striving to avoid gluten all I possibly can. I am still learning what I can and cannot have. Sure, I crave Krispy Kreme's, but, I KNOW I cannot have that.

The price that I pay for accidentally comsuming gluten is way worse than any amount of purposeful "fudging" would provide!

[darlindeb25]

my 2 cents worth again ---i have never intentionally cheated after going gluten-free--i never even had the desire to cheat--i was so sick for so long and i tried to avoid what i thought was making me sick--i love vegetables and the only ones i could eat that didnt bother me were green beans and sometimes carrots--little did i know it wasnt the veggies causing the problem --i work in a convience store and we sell krispy kremes and they have not once tempted me--i was dyvastated when i realized i couldnt have nacho cheesier doritoes--i never could eat them before and now i can and cant have them ---there are many good things we can still have--the one thing that would have done me in is peanut butter i would have a very hard time giving it up and i do crave egg noodles --i cant find any noodles that compare, maybe my standards are too high--you can look at celiacs as a life sentence or you can look at it as having your life back--i prefer to be happy i feel so much better finding out about celiacs has given me back my life deb

[lilliexx]

i am gluten intolerant ( non- celiac) i had severe stomach problems on a daily basis for 5 years. I have stopped eating wheat gluten and my stomach is normal now i am not really effected by barley gluten so i still drink beer. I know i shouldnt, but since it doesnt give me problems that i can feel its a lot easier to justify having it. Beer is the only thing i havnt given up. i even sat at a pizza restaurant with my son last night and wasnt even tempted to have a piece. Its easy to not want to eat wheat, since i know what it does to my stomach.