Trouble With Gluten Free Diet

[luna12]

Hi,

I haven't been tested yet, having trouble getting to the doctors to be tested, but I am suspicious that I have a gluten intolerance because I feel ill after eating wheat foods.

My main problem though, is that I can't last very long on the gluten free diet. I keep eating foods with wheat in it, like pasta and macaroni and cheese and bread, and I keep craving them all the time despite the side effects. I will eat an entire box of wheat noodle macaroni and cheese, then an hour later get so dizzy, exhausted and as though I have a lot of pressure up in my head. Sometimes I will pass out or fall asleep. I don't know if this means I have celiac disease or if its something else.

Last year I was able to go much longer than a day, I went for two weeks at the most. Lately I just have no willpower though, I will go one day without gluten, then the next day give in to my cravings. My biggest problem is giving up pasta and mac and cheese. I enjoy the rice pasta products, but they are usually expensive and don't carry them in the stores.

Maybe getting a proper answer, or possible diagnosis, will be a turning point. I am worried about being told I have celiac disorder, though.

[mushroom]

Hi,

I haven't been tested yet, having trouble getting to the doctors to be tested, but I am suspicious that I have a gluten intolerance because I feel ill after eating wheat foods.

My main problem though, is that I can't last very long on the gluten free diet. I keep eating foods with wheat in it, like pasta and macaroni and cheese and bread, and I keep craving them all the time despite the side effects. I will eat an entire box of wheat noodle macaroni and cheese, then an hour later get so dizzy, exhausted and as though I have a lot of pressure up in my head. Sometimes I will pass out or fall asleep. I don't know if this means I have celiac disease or if its something else.

Last year I was able to go much longer than a day, I went for two weeks at the most. Lately I just have no willpower though, I will go one day without gluten, then the next day give in to my cravings. My biggest problem is giving up pasta and mac and cheese. I enjoy the rice pasta products, but they are usually expensive and don't carry them in the stores.

Maybe getting a proper answer, or possible diagnosis, will be a turning point. I am worried about being told I have celiac disorder, though.

Others have reported on here how highly addictive gluten is, how it occupies certain opioid receptors in the brain and gives you a strong craving. It sounds as though, if you are to give up gluten, you will need the diagnosis to give you the motivation. The first two weeks are the worst to get through, and you will just have to eat lots of fruits and veggies and rice and things to fill you up till the cravings go away.

Good luck with your appointment, whatever the results may be. Do check back in with us and let us know, and if giving up gluten is called for we will be your support group as much as we can. Joining a local support group might also be in order.

[Jestgar]

I'm far less nice than the 'shroom.

If your health isn't important to you, then who is it important to?

[psawyer]

Keep looking for gluten-free pasta. It is becoming much more common. Yes, it is more expensive than the stuff made from wheat. What is your health worth? What will it cost you if you develop other celiac-related health issues? For me it is an easy decision.

[Roda]

For me it was not that bad going gluten free. For the most part we always cooked at home. A few days after finding out I went through the pantry and fridge and either marked things that I could not have or gave away the unopened stuff to neighbors and the food bank. I never craved pasta, I do like it, but it was not hard to give up. I was not even a big bread eater because I did not like the way the commercial breads tasted. I used to make my own though and would eat a lot right out of the oven while still warm. I tried several gluten free breads and did not like them at all, so right now I don't eat any gluten free bread. I like to make a "sandwich" out of corn tortillas or two corn thins. Pretty good. I am going to do some experimenting with bread making soon after I get this pan I want. It is hard sometimes when the rest of the family gets pizza, but I have the attitude that "yep it sucks but feeling bad sucks more" so I'm not tempted. I did get an official diagnosis and if I had not I don't know if I would have had the will power to stick to it either. I had been suspecting celiac for about six months before I even mentioned it to my endocrinologist to get tested. So even though at that time I thought it a possibility, I ate whatever I wanted. It was a good thing thoough, since by the time I had the blood work it was positive and I kept eating it for another month until I could get in for my biopsy. I still did not go gluten free until I got my biopsy results about five days after the procedure. So I can relate to your dilema. My diagnosis was pretty straight forward so I went gluten free and don't intentionally cheat. I know for a lot of you that the answers are not as cut and dry. But I think at this point if I was to suspect any other food intolerences I would not hesitate to do things on my own. I am now even considering doing a trial period of gluten free for my eight year old. He has had a lot of the same issues as I did as a youngster and would like to see how he reacts to 100% gluten free. The only test he had was and Iga Ttg and it was negative. But I am taking him back to his immunologist/allergist next week to possibley get more tests and go from there. If they are inconclusive I'm going to try it anyway. Good luck and just try to look at it from the perspective of what you CAN eat and not what you can't eat.

[frecOregon]

It might help to read more on this site about the damage that can occur if you have celiac disease and you keep eating gluten. A lot of us were undiagnosed for years (probably at least 15 years for me) and are paying the price of prolonged nutritional deficiencies or neurological damage.

If you go gluten free again stock up on other things you really like and focus on them instead. I always have guacamole in the freezer and chocolate and peanut butter in the cupboard for when I get into a gluten-free sulk. (I still get angry about pizza, even after 7 years.)

[mushroom]

I'm far less nice than the 'shroom.

If your health isn't important to you, then who is it important to?

It's not necessarily that the 'shroom is "nice"; just that she had such a hard time quitting smoking 'cos she was so addicted, and understands the difficulty of quitting an addictive habit. I don't have enough fingers and toes to count the number of times I "tried" to quit smoking, and the thing that actually made me do it was my chronic bronchitis when I couldn't even climb a flight of stairs without being totally out of breath. Once we come to the realization of what we are actually doing to ourselves the motivation becomes stronger. We can hope that luna12 will also come to the realization that she needs a little more willpower to address the issue. Certainly once I realized a possible connection between my RA and psoriasis and my digestive issues, giving up gluten was easy (I have never been tested or diagnosed). As you say, it is your own health that is the most important.

[Takala]

If this is your problem, you could be suffering from malabsorbtion issues of vitamins and minerals, which in turn, cause pretty intense cravings. Your body does not interpret this vitamin/mineral imbalance as the need to really suck down a calcium citrate tablet, but as a sugar or carbohydrate craving as it seeks to regulate the blood calcium levels. The body raids the existing bone structure for supplies if it can't get it from food being digested.

This is why many of us here have been told to, and/or have researched it, and have tried it for ourselves, and found it to be a thing that really works, to take a gluten free B vitamin complex, and a calcium supplement and some magnesium, so you are able to get more calcium, so some of it has a chance of being absorbed. Now doctors are also recommending more vitamin D, which is easy to find mixed in with a lot of the calcium supplements anyway.

You may want to try this.

If you must eat pasta, at least make it RICE PASTA , such as Tinkyada. And if you must eat cheese, please try eating real, aged cheese, which is very low in lactose and high in protein, not that ghastly cheese powder junk in the packaged mixes. Being gluten intolerant means you also may, in the beginning, have some problems with regular dairy, but be able to tolerate low or no lactose products such as real gluten free yogurts and hard cheeses. You can take cooked rice noodles, add a glop of olive oil, safe yogurt, and some real grated cheese, and get something that may actually make you feel better after you ate it, instead of worse. I have also, while in the phase where I couldn't eat much carbohydrate at all, gone to a modified SCD diet where I was using cooked vegetables as the base and smothering them with olive oil, sauteed garlic, chopped nuts, basil pesto, etc, and using that as a side dish to a meat item. I've even done lasagne casseroles made with cabbage instead of noodles, that were so good even regular eaters dove in for second servings- one can never have too much high quality olive oil.

And people don't realize that increasing vegetable consumption, besides the fresh fruit they are probably craving, can make one feel more full and less hungry, that and drinking more water.

I won't lecture you on the supposed lack of will power, because not everybody gets to the point quickly, that they're so sick they tend to associate certain foods with severe arthritic flares and neurological dizziness, numbness and shooting buzzes down my limbs, and kidney problems, so it acts as a sort of built in aversion therapy. I had a lot of doctors tell me there is no relation between the other symptoms, diseases and diet- well, I just had to eventually do my own thing, because I didn't want to give up being able to walk.

[MNBeth]

Maybe I've missed something here, but if you're pursuing testing for celiac disease, going off gluten first may interfere with the accuracy of your test results.

Once you test positive, or if you decide to forgo clinical testing, then amen to what everyone else has said. I felt awful for the first couple of weeks off gluten, and craved it like crazy, but it does get MUCH easier once you've broken the habit. I didn't sub with a lot of gluten-free breads & pastas; maybe it would have been easier if I had.

[ranger]

I did not get an official diagnosis, but my aversion to being sick all the time was enough. It was rough at first, but I learned to make most of the stuff you love myself. Like pizza and good bread. Most of the stuff you buy is bad, but Tinkyada is good. I usually make my own pasta (cheaper). I actually eat healthier on the gluten-free diet. Good luck!

[Gemini]

Hi,

I haven't been tested yet, having trouble getting to the doctors to be tested, but I am suspicious that I have a gluten intolerance because I feel ill after eating wheat foods.

My main problem though, is that I can't last very long on the gluten free diet. I keep eating foods with wheat in it, like pasta and macaroni and cheese and bread, and I keep craving them all the time despite the side effects. I will eat an entire box of wheat noodle macaroni and cheese, then an hour later get so dizzy, exhausted and as though I have a lot of pressure up in my head. Sometimes I will pass out or fall asleep. I don't know if this means I have celiac disease or if its something else.

Last year I was able to go much longer than a day, I went for two weeks at the most. Lately I just have no willpower though, I will go one day without gluten, then the next day give in to my cravings. My biggest problem is giving up pasta and mac and cheese. I enjoy the rice pasta products, but they are usually expensive and don't carry them in the stores.

Maybe getting a proper answer, or possible diagnosis, will be a turning point. I am worried about being told I have celiac disorder, though.

I am not sure how much a proper diagnosis helps people stick to the diet. What I have noticed, time and again, is that it relates to how sick a person gets when they ingest something that makes them really sick. With most people, at some point, and never for some, when you get to the point where you have no quality of life, that can be the trigger to help you stay on the straight and narrow. It is also easier to stay gluten-free as you age because you cannot get away with cheating when you are older....the repercussions are far worse.

I would advise you to seek a diagnosis from an MD but what would happen if the only way you knew you had a problem with wheat was a dietary trial...as you have already done? I sure sounds like celiac disease/GS, from what you have described. There are many substitutes for all those gluten-free foods you crave and some are really delicious. Using them in the beginning will help you over that "emotional" food hump you need to get through to achieve success with this lifestyle. Once your health is better, you will lose the cravings you are having. Sometimes there has to be a little pain to achieve success at something. Good luck to you and I hope you find the answers you seek!

[LDJofDenver]

Understandably, a diagnosis of celiac disease would concern most. However the sooner you know the sooner you can begin to heal. You don't want half a lifetime of damage.

I'd get tested ASAP. And, by the way, you have to be eating gluten regularly to be tested, it needs to be in your system (it's when you eat gluten that your body creates the antibodies to go after it). So don't go gluten free before getting tested.

And if it turns out that you are positive for celiac disease, you'll be amazed at the number of substitute products that are out there -- Annie's Mac & Cheese (rice pasta, of course) for one. There are grocery shopping guides available for purchase that make your life so much easier (instead of reading labels for 20 minutes in the grocery aisles), most store chains have gluten-free product lists, and many mainstream products (especially ones from Hormel and Heinz) are already labeling shelf items with "Gluten Free."

More and more celiacs are being diagnosed now in the U.S. and, as a result, more quality gluten free products - including baked goods - are available. The food industry is definitely taking notice.

[one more mile]

I doubt a diagnosis will really help. You already know what the stuff will do to you. We all know people with diabetes that eat sugar, people with cancer that smoke, and people with high blood pressure that do not have time to relax or take a walk. Sorry to sound like such a hard person but that is the only thing that got though to me.

I was sick and tired of being sick and tired. I had to choose to embrace life and not live in the sickness. I had to think the bite though. Will power did not help at all. For me gluten is a drug, I get stoned on the stuff, I have almost run over a person with my car, trying to get in to a bagel shop. I had to admit my butt was kicked by the stuff. Once I admitted defeat I could walk away from the stuff. I don't have to battle with the stuff cause I know each time it will kick my rear again, so why play with fire?

Are you tired of being sick yet?

[UnhappyCoeliac]

Hello

The person above me is a perhaps clowning around I certainly hope he is not serious, because YES a formal diagnosis from a DOCTOR not the internet will certainly help you.

I think your lack of motivation perhaps comes from the ambiguity surrounds the issue of whether you have coeliac or not. You need to best tested alot of alarmist people here will tell you you have everything from MS to cancer to coeliac etc but of course they dont really know so to speak.

Get a blood test, find out for sure, then its up to you if you want to ignore the disease and get MS or something. I ignored the disease for 6mths after diagnosis because I just couldnt be f*cked basically but once you look into how life altering something like MS is it changed my perception

[Jestgar]

I doubt a diagnosis will really help. You already know what the stuff will do to you. We all know people with diabetes that eat sugar, people with cancer that smoke, and people with high blood pressure that do not have time to relax or take a walk. Sorry to sound like such a hard person but that is the only thing that got though to me.

I was sick and tired of being sick and tired. I had to choose to embrace life and not live in the sickness. I had to think the bite though. Will power did not help at all. For me gluten is a drug, I get stoned on the stuff, I have almost run over a person with my car, trying to get in to a bagel shop. I had to admit my butt was kicked by the stuff. Once I admitted defeat I could walk away from the stuff. I don't have to battle with the stuff cause I know each time it will kick my rear again, so why play with fire?

Are you tired of being sick yet?

um, yeah, what I would have said if I were half as elegant as OMM...

[purple]

Walmart has gluten-free corn pasta.