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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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ThePurlQueen

Another Newbie - Completely Lost

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Hello there. I have been reading here for a couple of days, and have finally gathered the courage to post. I know there are a lot of posts just like mine, so thank you to anyone who reads my rambling.

Obviously I am here because of Celiacs, but I have not been diagnosed. Just like many stories I've read, I suspect based on all my symptoms. I don't know how many times I have seen my doctor with the complaint that I am just sick of always feeling like crap. My story is pretty typical to many I have read here. As a teenager I just always felt sick to my stomach, nauseated and moderate, tolerable pains. My mom shrugged it off, thought I was just complaining all the time, nothing really wrong. I started having depression, anxiety issues and panic attacks around 16. I blame some of that on hormones and being a teen, but I still struggle and never really understand why, I don't feel like I should be depressed, but often am.

I went through life just always having a lot of stomach aches and pains, it was just normal for me. I have never been 'regular' in the bathroom area as long as I can remember. Every few days was very normal for me. I have terrible gas and gas pains often, and it doesn't seem to matter what I eat. I get a lot of muscle aches and joint pain for no reason. I've been tested for RA twice. I have never been able to sleep well. I can stay asleep, but falling asleep is hard. I have no sex drive at all. Like I enjoy it, but have no desire to initiate it. I am completely exhausted all the time, everyone just says it's because I have 4 kids. I get headaches all the time and I feel like I can't remember anything most days. I have trouble keeping up with things if I don't write it down. When I was pregnant with my now 2 year old I had a glass of chocolate milk and then felt really bad afterward. I said to my husband, why does milk always make me feel so bad. He laughed and said maybe you are lactose intolerant. It was like a lightbulb went off over my head. THAT would explain all the stomach pain. I did some research and it seemed plausible so I cut out lactose. Not completely, but pretty much everything except the little bits in processed things and I still ate cheese. I love cheese :) I noticed a difference mildly in my aches, and in my gas, but everything else is still there.

Fast forward to now, for the last 5ish weeks I have switched from "going" every few days to every time I eat a meal. At first I thought I had a virus (probably did), I had super diarrhea for about 5 days and actually went to get IV fluids because I am pregnant and wasn't keeping anything in. It slowed to anytime I ate a large portion of something, but after 3 weeks I was beginning to wonder what was going on. I would get terrible cramps and have to go to the bathroom immediately. It occured to me that this has happened many times before, with the sharp pains, but it has never been this consistant. It's so embarrassing. Last week I had a period of about 3 days with nothing, and now I am back to everytime I eat I have diarrhea. Twice this week I haven't made it to the bathroom, and I was only downstairs at home. I am beginning to be afraid to go anywhere. It's humiliating and I have never talked to the doctor about the GI stuff because I am embarrassed and she can't seem to find anything wrong with me anyway. I have been tested for thyroid issuesand RA twice, and have had routine blood work even recently, but nothing special like vitamins or anything. I have been slightly anemic several times. Twice I couldn't donate blood because my hgb was too low.

Everyone brushes all my symptoms into stress of having 4 kids and going to school, but I believe I handle it all quite well and feel like crap all the time. It's not stress. I don't care what anyone says. I know my body and I just don't feel good ever.

While trying to figure out what would cause my current GI problems I stumbled across Celiac Disease and have been reading like a maniac ever since. It all sounds just like me. I can

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Welcome! Others may have more answers since I am still going through the testing process myself. If you know your primary care doctor will do a complete celiac panel for a blood test then you can just go with your primary. But if you aren't sure then ask for a Gastro referral. My primary was taking blood to test for the H pylori and I asked them to take it to test for celiac. She said yes but then the person taking the blood said that they were only testing for H pylori. I asked if she could just take an extra vial of blood and ask the doctor again to check for celiac and they did. It did come back negative, and I was referred to gastro who did an endoscopy that shows signs of celiac. So I am not waiting on gene testing and a possible repeat endoscopy. I am going to go gluten free either way after to see if it helps me feel better. I am considering going lactose free for a couple weeks even if I am negative too. It seems like everything I eat makes me feel sick so may as well try it. I am also doing food allergy testing, that may be a helpful test for you as well.

About the symptoms, I am not a doctor (surprise!) but those definitely could be symptoms. They could be symptoms of other things too I suppose but they are celiac symptoms. I have a lot of those too with with some extra ones, but I don't have the diarrhea, still mostly constipation.

Good luck researching and finding answers. I feel like even if I don't have celiac, I sure know a whole lot more than most doctors seem to now!

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Welcome, PurlQueen,

Your story sounds like so many others here. Asking your doctor about celiac disease is a good first step. It's good that you're getting tested before you go gluten free. Hope you feel better real soon! :)

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