New To Forum

[little d]

HI, Name is Donna I'm 36, and I am new here and this past year I have been tested with the scops, blood work, and even the PillCam. Trying to get diagnosed with celiac disease and everything has come back negative. But I still have all the symptoms D with gas pain, C, passing lots of gas that is emarrising and loud, in my stomach i can here the gas build up and bloating sometime depends on the food that i have injested, sometimes I get the ulsers on my tonge and in my mouth, heart burn, stomach burn, nausea to the point that i want to vomit but I don't, headaches, joint and possibly bone pain, at one time I thought that i DH on my knees, never went to the DR for that I should have had it for 3wks, when it went away I finally was able to look at it on the internet (wonderful thing to use) Sometimes very tired after eating reg food to the point of wanting to fall asleep; which I have to be careful because i work nights and I have enough trouble staying awake will driving home in the AM. Dizziness which I thought was connected to that time of month, weight gain when eating regular food (currantly 160lbs when I'm only 4'11") Before I was tested and started gluten-free, My sister which has been expericancing the same symptoms but hers are a lot worse than my symptoms but when i had already started the gluten-free diet for 4months and I had lost 15lbs and I felt great and which was not too bad except for the prices. My GI told me that being on the diet should not have made a diffence but it did. After this last test the PillCam which i started eating Reg food for over 6 months, I thought if everything came back negative from the first round of test, that I would start eating reg food again, and all the symptoms came back and they get worse when I'm very tired from working at night. The PillCam was done last month (my daughter was too scared to come around me Ha! Ha!) with the stuff around my waist. My GI was going to refer me to another GI which I declined because, I don't want to have anymore medical bills (copays are high for Specialist) Plus I just rebroke my foot in March so I'm having to an Ortho DR for that. And when I go to my next appointment I will be asking him if he can do a sreen on me to see if I have osteoposis or the onset of osteo. Since I have broken my foot 3x same bone primarly in the same spot. Now my question to everbody, If I respond to the gluten-free diet with no symptoms does that mean that I could have celiac disease and it is hidding so the GI's can't find it, or could it be IBS which my GI wants it to be I don't want it too be because, I don't want to take Meds all my life to control my body with meds, if I can do it with food I will.

THANKS you for ya'll responding back to me

[RiceGuy]

Like many here, you've found the diet to be helpful, and tests come back negative. It is all too common. Doctors are not well informed enough at all, and tests are inadequate to detect Celiac positively. The way I see it, does it matter what the tests say? I haven't even bothered to get tested, as I won't eat gluten just because some test says my system can handle it. I know it doesn't. I know how gluten make me feel, and I don't need that.

Note that The "S" in IBS means Syndrome. That's what they call it when the cause is unknown, so IBS is not really a true diagnosis. Your doctor is basically telling you he doesn't know.

Welcome to the board! I hope you find all the help you need to get well.

[dlp252]

Hello and welcome from one Donna to another! You could well be intolerant to gluten without being celiac. That would NOT show up in the scopes or biopsies. If you feel better off gluten, then there is your answer.

[smiley1nyc]

I was just reading your post and i'm 34 and was told through a saliva test that i was GI..i wasn't sure to believe it or not, i mean i get joint pain,headaches,Gas, and a lot of it, bloating, i had the mouth ulcers, but the last time was feb-march of 2006 haven't had them since, i get light headed, dizzy, but i really haven't gained weight i actually lost weight when this all started the sore were so paiful i couldn't eat, and i was on diet pills and dieting i must of loss 37lbs in 2 1/2 months..i have put some back on though. I have lost 70% of my hair and it's texture, changed and a lot of it had turned whit-gray, messed up periods, dry ski, but seems to be getting a little better(mostly on face by nose and t-zone area)..I don't seem to get nausea really, and i can't say i feel sick everytime i eat!! sometimes is worse then other times..i have ben to so many DR's...i was told i had female hair loss put on drugs for that(did nothing) TE(stress) all sorts of things..thenifound out i had THyroid antibodies, but t3 and t4 and tsh were ok so won't treat. I also have adrenal stress, and they found a parasite, which is in my colon.(i need to get meds for this)..My Dr. now want me to go on the gluten free diet,treat the adrenals with natural herbs, and the parasite with meds. She also said i should not eat sugar,or dairy, but i don't know if i can do that... well it sounds if it works for you then thats the way to go, and i guess forget what the dr's say!!!!!

just make sure they are not missing something else!!!!

  little d said:

HI, Name is Donna I'm 36, and I am new here and this past year I have been tested with the scops, blood work, and even the PillCam. Trying to get diagnosed with celiac disease and everything has come back negative. But I still have all the symptoms D with gas pain, C, passing lots of gas that is emarrising and loud, in my stomach i can here the gas build up and bloating sometime depends on the food that i have injested, sometimes I get the ulsers on my tonge and in my mouth, heart burn, stomach burn, nausea to the point that i want to vomit but I don't, headaches, joint and possibly bone pain, at one time I thought that i DH on my knees, never went to the DR for that I should have had it for 3wks, when it went away I finally was able to look at it on the internet (wonderful thing to use) Sometimes very tired after eating reg food to the point of wanting to fall asleep; which I have to be careful because i work nights and I have enough trouble staying awake will driving home in the AM. Dizziness which I thought was connected to that time of month, weight gain when eating regular food (currantly 160lbs when I'm only 4'11") Before I was tested and started gluten-free, My sister which has been expericancing the same symptoms but hers are a lot worse than my symptoms but when i had already started the gluten-free diet for 4months and I had lost 15lbs and I felt great and which was not too bad except for the prices. My GI told me that being on the diet should not have made a diffence but it did. After this last test the PillCam which i started eating Reg food for over 6 months, I thought if everything came back negative from the first round of test, that I would start eating reg food again, and all the symptoms came back and they get worse when I'm very tired from working at night. The PillCam was done last month (my daughter was too scared to come around me Ha! Ha!) with the stuff around my waist. My GI was going to refer me to another GI which I declined because, I don't want to have anymore medical bills (copays are high for Specialist) Plus I just rebroke my foot in March so I'm having to an Ortho DR for that. And when I go to my next appointment I will be asking him if he can do a sreen on me to see if I have osteoposis or the onset of osteo. Since I have broken my foot 3x same bone primarly in the same spot. Now my question to everbody, If I respond to the gluten-free diet with no symptoms does that mean that I could have celiac disease and it is hidding so the GI's can't find it, or could it be IBS which my GI wants it to be I don't want it too be because, I don't want to take Meds all my life to control my body with meds, if I can do it with food I will.

THANKS you for ya'll responding back to me