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

Lister

Whats Happening To Me

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History-

Well this all started about 3 weeks ago i got sick with some form of stomic flue only it didnt fully go away and i was starting to get really bad gas pains so i had pepto, well i did not read the back and when it turned my movments black i rushed to the doctor, so they did tests and he desided that i may be sick, but i also have gadiverticulitis- he sent me home after only taking some x-rays and told me to eat lots of fiber and put me on the brat diet, symptoms did not improve until i started having red movements including peices of black stuff, so i was rushed to the ER, where they did a cat scan and some blood work to come up with i dont have gadiverticulitis, and they sent me back to my doctor for further followup " so basically i waisted 2 visits to the doctor to get the wrong diagnosis" so i came back to him and all he did was hand me some pamphlets about IBS and said it sounds like thats what i have, but then he also said it could be Celiac Disease and told me to look it up and eat as if i had it. I go back next week for a Upper GI to see whats wrong because he is still clueless. But i am worrying that if i do have Celiac Disease and hes waiting this long to deal with it am i going to have a problem with malnutrition. My body has pretty much rejected digesting food now, I go from states of constapation to diarea back and forth. I get diarea the second i eat and it usaly contains chunks of what i have just eaten. Then when its just constapated if do have a movement they contain all sorts of wierd things that freak me out. Im scared that im constantly going to faint because i have felt well the only word i can think of is stoned, like im not acually tired but i am very fatigued and following movement is hard and its been this way for a while now.

Symptoms

my bowls keep talking like growling or popping or something i cant discribe the noise but it hurts right before they do it and it does it all over my stomic

feel bloted all the time

Fatigue

Stoned like state " slightly dizzy, hard to follow movement

always tired

not digesting food properly at all

Im just worried that i wont make it to wensday for my doctor apointment at this rate i seriusly felt like i was going to fall over at work, Should i be worrying about this or is this normal i worry alot to the point of the doctor thinks i gave myself a ulscer, I kind of just sit around and worry because i have gone 3 weeks now without answers and its starting to scare me

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Hi Lister--welcome! :) Please try and relax. You seem to have symptoms that could point to Celiac. It's good that your doctor is considering that as a possibility. What I don't agree with is telling you to begin the diet now, when you are scheduled for your tests. As uncomfortable as it is, if you are to have a biopsy that is accurate, you need to be eating gluten every day until then. Did he do the Celiac Panel blood test? That would be a logical first step. Did he test you for anemia? Anemia is very common in Celiacs and causes the fatigue and dizziness you describe. Here is a link that explains the blood test--you could take this to your appt. on Wednesday--

http://www.celiaccenter.org/faq.asp

Good luck with everything--feel free to post anytime with questions about the diet or anything else. Try not to worry, just take it one step at a time.

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Hello

It sounds like celiac's but don't go on the diet if you are going to get an endocscope and a colonoscopy because it can alter the results. I did the D & C thing for over 2 months -it seemed nothing was working correctly in my system. I know you are miserable but hang in there and let them DX before you stop eating wheat & gluten.They told me to stop and I did and started to feel better but then they wanted to do the testing , which they did and my results were incorrect because the dummies had me stop eating wheat & gluten for six weeks prior to the testing.

Most doctors don't have a clue about this illness.But you will learn more than any doc can tell you from this site.

good luck

mamaw

welcome

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i dont know what blood work they did, When i was at the ER they took 3 blood samples from me but i have not clue what they where testing for. Also i forgot to put as a symptom my head feels like its caving in like pressure all over my head but not a headace also ihave a jumping low fever that constantly goes from 98.5 to 99.3, and his next step is the upper GI hes trying not to cost me to much money to fast, Im 20 years old with no health insurance im already probably going to have to get a second job to cover the bills i have already

Oh edit i forgot 1 of my symptoms the one thats scaring my co works, in less then 2 weeks i went from 287 pounds to 198 now i am thinking it may be because of my rapend change of diet, I work at a fast food restront and until these problems came around i will admit i was a porker- i was eating the food 3 times a day for breakfast lunch and dinner mainly because its free but still not good for me, i have changed to eating very little a day as i have no real apitite and eating hurts my stomic no matter what i eat.

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I would ask the doctor what they tested you for already. I would think that the blood testing would be a lot cheaper than the endo/biopsy. Like I said, the blood tests for Celiac are very specific. If you come back positive with them, you could choose to go gluten-free at that point and if it helps, just stay with it. I posted the link so you would know what to ask.

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Thank you so much for your fast replys my doctor should be calling me back shortly so we can discuse stuff.

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Another option is the diet challenge. That's where you do go gluten-free for a period of time, see how your body reacts to no gluten, then introduce gluten again and monitor your symptoms. It is a valid dx tool, non invasive (read cheap) and as accurate as anything out there. That's how I was dx'd and no other dr's have questioned it since.

Keep us posted!

Annette

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