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    Do you have questions about celiac disease or the gluten-free diet?

klemmen

I Don't No What Else To Do

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Hey

Humm I was diagnosed with Celiacs just over a year ago, and for a while it got better, and then it got worse again, and then it was okay again, and now these last few months it is exactly the same again...i can't even go to uni without worrying that i will need to find a toilet. My stomach always feels a bit off, like i have eaten gluten but i haven't. I'm am soooo sure i am eating a 100% gluten-free diet. I checked all my toiletries, my kitchen is clean, only i use it so there is no breadcrumbs or anything. My utensils have only ever been used with gluten-free food, so i just can't see where the problem is. I went to the Dr's about having pain under my ribs and he said he couldn't see what it was. The pain has moved up my chest now, to kind of just under my breats, and i am always sooo tired, like it is impossibel to get out of my bed in the morning, when i am only studying so nothing that should be making me so tired. Every few days i get loose bowels and they are never right .. you no lol, and i don't no what to do, whether to go back to the doctor or just accept that it will always be like that. It is just so frustrating that i still feel ill, and what about when i have to go to work and i am behind a bar or working sumwhere where i can't run to the toilet. I no there are millions of things u could have that are soooo soo much worse than celiacs but it is really bothering me recently , just not being able to go to uni lectures or out with my mates. Any suggestions as to what i could do or if it is normal to still be feeling sick? thanks from Kate

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Guest nini

it could be that you have other food intolerances like dairy or soy that have reared their ugly head after going gluten free. Apparently this is fairly common among celiacs. Try taking your diet down to the most basic foods like rice, bananas, apples and plain baked chicken, and see if that makes a difference. If it does, slowly add one food at a time back into your diet and watch yourself for any kind of reaction.

I'm still having fatigue and pain, so I'm going to have to do this myself, so we can do this together!

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I had similar problems when I first went gluten-free. At the very beginning, things got really bad. Then, they leveled off. I got into a mode where I'd be fine for awhile and then would unexpectedly get sick. It was so unpredictable that I never left the house without some Immodium caplets in my pocket. If I was going to be in a situation where I could not afford any problems, I would take some caplets in a prevention mode, just to be safe. This was dangerous because it is easy to exceed maximum doses.

When things did suddenly get bad, I invariably found something that contained gluten and was the culprit. It was just part of a learning process that took me 1 to 2 years to master. A couple of things I learned stand out. However, I mention them with the caveat that they are just my experience and most other celiacs do not have similar experiences to some of these.

First, I discovered that I react to some food products that other celiacs eat with impunity. For instance, both La Choy Soy Sauce and Fruit Punch Gatorade are universally accepted as gluten-free. Nonetheless, I consistently react to them with symptoms that I recognize as my own particular gluten reaction. Interestingly, they both contain caramel coloring. I have the same reaction to maple syrups that are universally accepted as gluten-free but which also contain caramel coloring. gluten-free colas, such as Coke and Pepsi, are not a problem, although they contain caramel coloring. As a result, I use gluten-free lists with a certain amount of trepidation. When I pick something on the list and use it for the first time, I do so in such a way that I can gauge the effect. Depending on what happens, I sometimes decide to stay away from the product even though other celiacs consume it without problems. As other people have pointed out, there is always the possibility of other sensitivities. I also seem to be a hypersentive celiac. I once reacted to a gluten-free product and contacted the manufacturer. They reaffirmed that it was gluten-free but were nice enough to send it out for testing. The testing indicated it contained 0.006% gluten.

Second, I discovered the hard way that it is not just what goes in my mouth that can cause a problem. Far and away the worst gluten accidents I had after going gluten-free were caused by really weird, unexpected sources. I had a really bad stretch of a couple weeks where I was sick as a dog. I eventually traced that to Preparation H. My doctor had recommended it during a physical. Another time, I got sick while taking some time off from work to remodel a room in my house. It turned out that wallpaper paste can contain wheat. When I peeled off the old wallpaper, I inhaled paste dust that got into the air.

Third, I also notice that I have a sick feeling in my stomach walking through the bread and bakery aisle in the local grocery. I know this is absolutely an mental condition and not real. However, the sick feeling nonetheless is real.

Bottom line, coping with celiac disease is a hard road to travel and there are lots and lots of bumps and potholes. If you can hang in there, eventually things will get better.

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Have you had your gall bladder checked?? I have had some gall bladder problems in the past, the pain is much as you describe. The first time, they thought I was having a heart attack as I had crushing chest pain, I had the total MI workup in Emerg! I have not had an attack in awhile, but when I do have gall bladder pain, it is up under the ribs and can best be described as a heavy feeling in my chest. When it goes all out, it is a crushing/squeezing pain around my chest, right where my bra goes around, basically. Luckily, this kind of attack has only happened once, and if I experience it again, I have no choice but to get medical help just in case it really is a heart attack! I guess I am saying that although it could be your celiac disease acting up, it could also be other stuff, especially if you are sure you are gluten-free. I do hope you feel better and find some answers.

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Do you have a spouse or significant other that you kiss shortly after they have consumed gluten (food, beer)? Maybe before you were gluten free, this didn't bother you but now that you are off gluten, your body would be much more sensitive to it.....

Karen

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Have you thought of trying the SCD Diet to see if you can get your itestines happy again? Mine seem to be reacting badly to lots of things. I'm hoping SCD will give things a chance to heal, then I can try to add back Dairy and perhaps rice and maybe corn.

www.breakingtheviciouscycle.info

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My husband has been gluten free for about 3 months. He has good days and bad. He also gets the pain like you described in his chest. He has had his gallbladder out so I know for him its not the gallbladder but that is a very simple test that can be done to rule it out. He has also eliminated soy and casein from his diet. Hope your feeling better soon.

Jennifer

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I'm doing elimination diet too! We can all do it together. I've also been gluten-free for about 2 years and these last couple months have been having major trouble. I'm suspecting soy and dairy. Sad, because this severely limits my variety. But happy because I've been wearing the rug out into certain rooms in the house ;)

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hey everyone, thanks for repyling, i really appreciate it. I think maybe I should try the elimantion diet too, like the idea of doing it together lol..so hard not to eat other foods :blink: , i don't eat meat but thankyou nancym for the suggestion of SCD diet. How long do you eat certain foods before introducing more food in the elimantion diet? Maybe i should ask to get my gall bladder checked to rule it out, but i never like going to the dr, i always feel like i'm wasting their time :huh: I do the same as you did codetalker, i take Immodium in situations in case or incase my stomach feels dodgy, but i don't no what else to do to. I don't have anyone to kiss after they eat gluten :lol: hehe i'll remember it for the future though..thankyou :) Mum told to me to try soya milk but i don't no, maybe i should try the elimination diet first? she said i couldn't tolerate milk until i was 4 and then she gradually introduced it to me, but maybe that is the same with a lot of children.

you think it would be enough we had celiacs wouldn't u hehehe :P

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Hi ,

I had a neg celiac blood test. But my body tells me otherwise. I just lost my insurance, so I will have to wait for the biopsy. I did make it to the allergist b4 I lost my insurance & he said tomato was my highest food allergy followed by soy, rye, pork & mold foods (cheese,anything w/vinegar, smoked meats,baked goods with large amounts of yeast and many more items. :(

I am trying the elimination diet with none of theses foods,then you add them back one at a time. I just started today & I can tell this is going to be hard vegatable oil is (soy oil) so watch your margarines. If you have any tips I would really appreciate them.

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