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No Official Diagnosis...Need Your Help

beijing

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beijing Newbie
beijing
Posted

Ok here it goes, I am very new to this so I don't really know how to do this but here is my history. I am 32 yrs old. when I was a baby I had a bloated belly all the time, doctors told my parents I was allergic to a huge variety of foods but never wheat products, they were very poor so they never pursued testing. I have struggled with stomach issues my whole life! I go back and forth with constipation and diarrhea, I developed a rash at 16 dermatologist said I was allergic to heat, I still have it! Ive been married for 10 years and no babies with no birth control I did get preg once but miscarried, diagnosed with anxiety issues as well put me on medication but i stopped taking it. I've been told I had parasites with no testing (just by looking at me). I've been told I have absolutely nothing wrong(with no testing). I went to the emergency room and had a ct scan and the doctor yelled at me and told me i needed to use the bathroom, and I was too embarrassed to tell him I couldn't because he was just making fun of me, 2 of my teeth are starting to lose their enamel. I have no insurance so I saved money to go to the gastro dr. 1 month ago, and I explained to him that it always happens after I eat and that I just don't know what to eat anymore, and he just said "why? eat whatever u want there is nothing wrong". so anyway I heard about celiac disease and my husband encouraged me to go gluten free for a while and see what happens, so I'm 3 weeks in and I do feel a lil better but every once in a while my belly will mess up again. So what do you guys think? Should I pursue the official diagnosis, I'm worried since i've had the symptoms so long that my my intestines could be really damaged. Oh yeah and my hair is thinning pretty bad and my skin has gotten bad, are these things reversible? Im sorry this is so long, thank you for reading.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Ok here it goes, I am very new to this so I don't really know how to do this but here is my history. I am 32 yrs old. when I was a baby I had a bloated belly all the time, doctors told my parents I was allergic to a huge variety of foods but never wheat products, they were very poor so they never pursued testing. I have struggled with stomach issues my whole life! I go back and forth with constipation and diarrhea, I developed a rash at 16 dermatologist said I was allergic to heat, I still have it! Ive been married for 10 years and no babies with no birth control I did get preg once but miscarried, diagnosed with anxiety issues as well put me on medication but i stopped taking it. I've been told I had parasites with no testing (just by looking at me). I've been told I have absolutely nothing wrong(with no testing). I went to the emergency room and had a ct scan and the doctor yelled at me and told me i needed to use the bathroom, and I was too embarrassed to tell him I couldn't because he was just making fun of me, 2 of my teeth are starting to lose their enamel. I have no insurance so I saved money to go to the gastro dr. 1 month ago, and I explained to him that it always happens after I eat and that I just don't know what to eat anymore, and he just said "why? eat whatever u want there is nothing wrong". so anyway I heard about celiac disease and my husband encouraged me to go gluten free for a while and see what happens, so I'm 3 weeks in and I do feel a lil better but every once in a while my belly will mess up again. So what do you guys think? Should I pursue the official diagnosis, I'm worried since i've had the symptoms so long that my my intestines could be really damaged. Oh yeah and my hair is thinning pretty bad and my skin has gotten bad, are these things reversible? Im sorry this is so long, thank you for reading.

It sounds like your doctors are as bad as mine were. Being gluten free has a big learning curve and we don't heal overnight. Are using the same toaster as the gluten eaters? You need your own and you also need your own stuff like butter, mayo, pnut butter etc. The fact you feel a little better is a good sign but especially at first we can get glutened accidentally. You may want to consider dropping dairy for a bit until you heal. Many of us can't digest it at first.

If you want a firm doctor derived diagnosis don't go gluten free yet. Ask for a celiac panel and then go to a different GI doctor and see if they will do an endo. There are false negatives with both though so a trial of the diet for at least 3 months would still be inorder after. You could also try Enterolab testing. It is done through the mail and you don't have to go back on gluten to have it done. They look for antibodies and although they don't diagnose celiac they can tell you if you are forming antibodies to gluten and you don't form antibodies to stuff your body want in it.

You have come to the best place I know of for info and support. Ask any questions you need to.

beijing Newbie
beijing
Posted
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thank you so much for your reply, i have started to get suspicious about dairy, I ate a gluten free pizza and I couldn't understand why I backtracked I guess it had to be the cheese. What about weight gain, i'm tired of everyone thinking I'm anorexic

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