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pdx.lila

I Think It's Celiac...

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Since I can remember I have had stomach aches after eating and I get sick all the time. I'm often too tired to do things and feel like I need so much more rest than a normal 21 year old. After have 3 serious illnesses in the last year (kidney infections, what they think was internal hives and bad pneumonia) I went to see a naturopath. She suggested I try getting off wheat and dairy for a while and see if I felt better. I felt so much better! I finally reintroduced dairy again (I'm a vegetarian and thought I needed the extra calcium/protein) and still felt much better without the wheat. I wasn't as tired and didn't get stomach pain after eating.

In January I went to South Africa for 4 months and while I was there my symptoms got worse. Not only could I not eat wheat,but I couldn't eat anything with gluten. I tried to cut it out,but in South Africa that's pretty hard. Now I'm back home and I'm so frustrated with my body. It feels like gluten is sneaking in to everything I eat. I'm not at all underweight,in fact I've gained almost 25 pounds in the last year alone, but I get horrible stomach pains after eating gluten, my body tenses up to the point where I feel like I have lead in my veins and can't move, I feel fidgity and like I have to move but I don't have the energy to do it, my kidneys are in intense pain and I feel extremely dehydrated and my brain feels like it's in a fog. I've had joint pain and muscle cramps since I hit puberty but nobody really knew why. I've been on a gluten-free diet(as much as possible) for about 7 months straight now and when I can really stick to it,I don't get muscle cramps, my bones don't hurt and my legs rarely fall asleep from sitting cross legged on the floor.

Does this sound like celiac to folks? I've been to two doctors who are both convinced I have celiac,but the blood tests have both come out negative(they did full workups, including kidney & liver functions & iron tests). I'm going to see a gastroenterologist next week but I feel like I'm getting more and more sensitive. I almost want it to be celiac so I can know why I've had all these unexplainable problems my whole life. It's a bit terrifying because when I accidently have miniscule amounts of gluten it feels like my entire body - internal organs & muscles - decide to give up and stop working.

Sorry this is so long,I'm so upset and frustrated that I had to get it out. Nobody I know has celiac or anything like it and even my Nurse Practitioner mom is a bit skeptical that all my problems are related. My partner is wonderful about it - he's learned all the different forms of gluten and checks all foods for me, he speaks up when we go to friends if I'm too sick or don't know them, and he does his best to make me feel better when I am glutinized. But I want to get back to life when I'm not too tired or in too much pain to function. I'm so glad to have found this board,it's been really helpful to read about other people in the same boat as I am.

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The blood tests could have been a false negative, it does happen more often than many doctors are aware of. You do sound like you could be one of us, the biggest key being the relief you got when you followed the diet. Do make sure that you are eating a full gluten diet if you are going to try and get diagnosed through an endoscopy. You need to be back on gluten for 6 weeks to 3 months for any chance of an accurate biopsy. IMHO though if you got relief from the diet, then got sick when you added it back in that is pretty diagnostic in itself. I hope you get some answers and are feeling better soon.

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Yes, you do need to be eating gluten for your endoscopy. dr should have told you that. You sound pretty typical to me. Even if by some chance your test is negative, you could still be gluten intolerant; same symptoms, same treatment. So you can go back on your gluten-free diet the day of your test.

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