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Any Advice? .. Please

dii103

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dii103 Newbie
dii103
Posted

Hi everyone, I am new to this whole forum and to a possible diagnosis of celiacs. I need some advice about what to do/ if anybody else thinks that this could possibly be celiacs. Around October I began getting sick alot. I have the flu 4 times since October and just have not being feeling well at all. In Decemember I started getting these horrible stomach pains. I live away at college so I thought that my stomach was just acting up because of the poor dining hall food so I didn't really think much of it. I would run to the bathroom after everything I ate and was in tons of pain. In May when I returned home I thought my stomach would improve because I would be eating my mother's food again, but nothing changed. I would get these horrible pains, have to run to the bathroom and just didn't feel like myself. My mom took me to my doctor who ordered blood tests and stool samples. The blood tests came back negative, and the stool sample came back borderline celiac. So she refered me to another doctor who I saw today. That doctor told me to keep eating how I am but remove all dairy products from my diet because she thinks I might be lactose intolerant, and if that doesn't work then she will order an endoscopy(?). I don't no what to do, I started eating gluten-free and felt so much better but my doctor said just to eat normally. I don't think anyone truly understands what I am going through. I feel horrible alot of the time, my stomach is always killing me, I hate eating because I hate knowing that I will have pains within a few hours. Does anyone have any advice at all? Do you think this could be celiacs?

Sorry for it being so long, but thanks for reading and I appreciate any advice that anyone has for me!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I would ask the doctor to do an endo now not later. If you have tried eliminating gluten and your symptoms were relieved that is a real strong indication that you need to eliminate gluten. Do be aware that if you are not eating gluten when you are tested by blood or endo that it will likely cause a false negative and even on a full gluten diet false negatives are not uncommon.

Many of us are lactose intolerant until after we heal but many can add dairy back in. After all testing is done for celiac be sure to do the diet strictly for a bit. Your body knows whether it wants gluten or not and while a diagnosis can make it easier for some to stay compliant and it can make it easier while at college meal plan wise in the end you don't need a doctors permission to eat gluten free.

Skylark Collaborator
Skylark
Posted

Well, if your stool is borderline celiac and you feel better not eating gluten, then yes it could be celiac.

There is a clinical test for lactose intolerance. Why isn't your doctor doing that and then scheduling an endoscopy? I also wonder why your doctor isn't doing an intestinal biopsy based on your stool sample. Gee... I really wonder about your doctor altogether...

Yes, you have to eat "normally" to get diagnosed with celiac.

Tigercat17 Enthusiast
Tigercat17
Posted

Hi everyone, I am new to this whole forum and to a possible diagnosis of celiacs. I need some advice about what to do/ if anybody else thinks that this could possibly be celiacs. Around October I began getting sick alot. I have the flu 4 times since October and just have not being feeling well at all. In Decemember I started getting these horrible stomach pains. I live away at college so I thought that my stomach was just acting up because of the poor dining hall food so I didn't really think much of it. I would run to the bathroom after everything I ate and was in tons of pain. In May when I returned home I thought my stomach would improve because I would be eating my mother's food again, but nothing changed. I would get these horrible pains, have to run to the bathroom and just didn't feel like myself. My mom took me to my doctor who ordered blood tests and stool samples. The blood tests came back negative, and the stool sample came back borderline celiac. So she refered me to another doctor who I saw today. That doctor told me to keep eating how I am but remove all dairy products from my diet because she thinks I might be lactose intolerant, and if that doesn't work then she will order an endoscopy(?). I don't no what to do, I started eating gluten-free and felt so much better but my doctor said just to eat normally. I don't think anyone truly understands what I am going through. I feel horrible alot of the time, my stomach is always killing me, I hate eating because I hate knowing that I will have pains within a few hours. Does anyone have any advice at all? Do you think this could be celiacs?

Sorry for it being so long, but thanks for reading and I appreciate any advice that anyone has for me!

Hang in there! I know it's hard to deal with , but you will get through it all & feel so much better too!

I would get the upper endoscopy done as soon as possible & keep eating normally even though it's making you sick. If you stop eating gluten & you get the endoscopy test done, it could seriously effect the results & you want to make sure you are getting properly diagnosed.

The upper endoscopy test is the "Gold Standard" for the diagnosis of celiac disease. Blood works can come back as "false negatives." The first time I had the blood work done it was 167 -which is completely positive! Then I had one done two months later & it was 3 -this was a false negative since I still wasn't healed yet. I had it retested again & the accurate blood work results were 67, so it just goes to show you even an extremely celiac person like myself can have a false negative blood work.

The upper endoscopy is not painful at all & your doctor will give you anesthesia so you won't feel a thing. I was completely asleep when I had mine done. Last year I really thought I was dying. But with eating gluten free I slowly got better. And the good news is the gluten free diet cures the celiac disease & if you do have it, you'll feel so much better - like a new person! :)

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