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Wondering If I Have Cd?

Guest Rachel24

By Guest Rachel24
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest Rachel24
Guest Rachel24
Posted

Hi, this is my first post and I'm hoping someone might shed some light on my situation. I have been healthy all my life with no illness or food problems until 2 years ago. It started out with autoimmune thyroid disease (Graves). I was treated for this with radioactive iodine but all of my painful symptoms have persisted despite normal thyroid levels and adequate treatment. My thyroid doc has always insisted that my symptoms are not related to my thyroid treatment. During the first year my symptoms were mainly in the head and neck region. I had terrible headaches, burning sensations on my skin and in my mouth, weakness, muscle pain, crying spells, depression, fatigue, sore throat, pressure in my head, ears and nose. I had no noticable GI symptoms and never thought about food being a problem. I was gradually losing weight despite a normal appetite though. I soon started to notice after eating some foods mainly sweets like donuts or cakes I would feel a little disoriented. My concentration and memory began to suffer greatly. I felt kinda fuzzy alot of the time..never clear-headed. Last year all of a sudden I noticed quite a bit of fluid retention. This is throughout my body but most bothersome in my face neck and hands. I was still losing weight despite the extra fluid. I was gobbling food down to try to gain weight but I'd only feel worse and I'd feel swollen with fluid and still not gaining! One day after eating Mac and cheese I could actually feel myself swelling up. The same thing happened after McDonalds and another time after pizza. I began to suspect food and tried eating only veggies and meats. After a couple days of this I started noticing strange looking stools that float. Lots of undigested food floating. The weight loss became more noticable and scary to me. I think because of fluid loss. I went back to eating normal and of course the fluid came back but the strange stools went away and I was more constipated than anything. I heard about Celiac and was convinced that I had it. I asked my doc to test me. The blood test was negative and I was crushed. During this time I tried to go gluten-free, but for only about 2 weeks until I got test results. I have seen so many doctors and had so many tests done but everything has been normal so far. I have been unable to work and so depressed because of the constant pain. 3 weeks ago I ate out and immediately felt dizzy, disoriented, depressed and my eyes burned. I ended up in ER but again all tests were normal. My mom was distressed by my weight loss and decided to keep feeding me (cereal, milkshakes, french toast etc) wich only made me sicker and I didnt gain a pound. I wondered about Celiac again. Maybe the test was wrong? I started the diet again 2 1/2 weeks ago...this time very strict. At first I thought I was dying. I was very weak and shaky. Diarreah every day. Miserable and crying lots. No appetite at all. Burning sensations everywhere. After 2 weeks my head feels much better, I have some energy and I'm not so depressed. I have lost 25 lbs. since this started and am currently at 96lbs. I still have fluid retention and my arms and legs look extremely thin. No muscle. The diarreah seems to be getting better but the strange stools are back. The floating stools dont seem as bad when I'm not gluten-free...maybe because I get constipated. When gluten-free I seem to go daily. Anyways since starting the diet I have terrible stomach pain but it seems to be getting a little better. Its only bad when I first wake up now. I have to eat throughout the day to maintain 96 lbs. but my appetite is getting stronger. I cannot keep any of my weight gain. Every morning its back down to 96. My head is not feeling like a ton of bricks in the morning now and the pressure and pain is down to a minimum. When I eat freely the muscles in my face and neck seem to tighten and swell. Its very painful. It was like that for so long I developed TMJ but when I go on the diet this goes away after only a few days. Sorry to go on and on but this has been my life for more than 2 years now and I'm just hoping the end is near and a diagnosis will come soon. I will finally see a GI doc tomorrow (the only specialist I havent seen). I am going to ask about celiac disease and hopefully I can get a biopsy. If I do happen to have Celiac I dont know how long the villi will stay abnormal if I'm gluten-free. I only know that my stools are not right and I'm not gaining weight. :( Do these symptoms sound like Celiac? It may sound strange but I hope it is so that I can get on with my life. The diet is not as hard as living in pain and not knowing the cause. At least my head is not so fuzzy now and I can think clearly. :)

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KaitiUSA Enthusiast
KaitiUSA
Posted

Your story sounds similar to mine. I also have graves disease but do not need medication for it because it is in beginning stages. Thyroid diseases are really connected with celiac disease. My main symptoms were nausea, anxiety, and weight loss. I was also in the ER 4 times before my diagnosis and everything showed normal. Your symptoms do sound like those of celiac. You may want to look into Enterolabs. They test for malabsorption, genes, gluten sensitivity and so forth. You can go to their site at www.enterolab.com for more info. What tests did you have done for celiac? There are now specific ones out there for celiac. You may be gluten intolerant but just not celiac. You could have other sensitivities too. York labs test for like 113 foods so you may want to check into that too. I definitely would not rule out celiac just yet...alot of doctors do not know alot about celiac and it is a very underdiagnosed disease.

Some people on this site know more then most doctors and this is a great place to come for info..hang in there...I know what it is like to eat and not be able to gain weight...if you need any advice with that you can email me and I can tell you what I did to gain weight. I think you should try ensure plus(chilled) gives you alot of calories :D Good luck

Guest Rachel24
Guest Rachel24
Posted

Thanks for your response Kaiti :) If I do have Celiac or gluten sensitivity this seems like a great place to get info. and share stories. I did have the ELISA food intolerance test done and I'm waiting for results. It was not York though..Great Smokies Diagnostic. I should get results any day now. For awhile it seemed I was allergic to everything but now that I've eliminated all gluten and dairy I seem to be alot better. I'm not sure about eggs so I'm avoiding until I get my test results. I saw an alternative doc who ordered the test but my reg. doc says these tests are unreliable and controversial so I'm not sure what to believe. The only test for Celiac I had was bloodwork. I dont have a copy of the results so I'm not sure exactly what was tested but I can vaguely remember seeing the words Antigliadin and IgA and a couple other things. It was negative though. I read that sometimes people can have negative bloodtests but positive biopsies but I'm not sure if this is true or how common it is. My iron has been tested several times and only once was it a little low but not anaemic. My stools were tested for parasites and fat. All was normal. Unfortunately my sample was not one of the strange bulky floating stools although I'm not sure if that would have made a difference. The docs say that they do not see malabsorption from these tests but they can see from looking at me how much weight I've lost and how unhealthy I look. I am stumped. How can I be sooo sick yet everything is always normal??? I wasn't experiencing nausea until the last few weeks..when I started the diet. Its worse in the morning but gets better after I start eating. I have anxiety as well but that seems to be getting better. Also lots of bruises come and go on my legs and my joints ache if I'm not on this diet. I hate the mornings because this is when my stomach hurts most and it feels very empty. I tried Ensure awhile back but I was so messed up then everything seemed to be causing symptoms. Maybe I will try it again now that I'm feeling better. Thanx for the advice.

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