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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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I haven't been diagnosted just yet, but I have suggested to my mom that she and one of my little sisters get tested.

I have 3 sisters and the one that I am suggesting that she have tested has migraines to the point of vomiting and has recently been experiencing bloating after eating bread. Which is just crazy considering the fact that she is a fan of bread.

My mother is willing to have my sister tested but said not to worry about her. She has managed this long. My mother was told she had IBS about 8 years ago.

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Mnicole - convincing family is tough. I've been trying to get my mom to get tested. She was diagnosed with IBS over 20 years ago, has MS and Fibromyalgia...tons and tons of symptoms but she hasn't agreed yet. Every time we talk I share the positive changes I'm finding and every so often I suggest she think about it. She's stubborn but the apple doesn't fall far from the tree so I'll keep trying! Focus on the positive with your mom. Maybe you can convince her.

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Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

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Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

I know for me, I am having a hard time coming to grips with it all. I accepted the IBS diagnosis without blinking because all I had was stomach issues. There were some days it was so bad that I felt like I used an entire package of tp and spent my day in the bathroom, and other times where I would go a week or more without any problem at all, some days I would have the OPPOSITE problem: Constipation.

But that was all. so I could accept it. I learned to deal with my tricky stomach and stopped being shy about public bathrooms. Its just the way life was. I barely even gave it much thought because no one told me to restrict my diet. I had my gall bladder removed, so I did watch the heavy, greasy stuff but otherwise the dr basically shrugged his shoulders and wiped his hands clean of me. And I trusted him.

Now, its more than GI stuff, its headaches, sinus infections, cramps, joint aches, chills, fever and irritibility. But still, I am having a hard time accepting celiac disease as a diagnosis only because its become so widespread in the last few years, I am afraid of accepting it in case its just the "new and cool" diagnosis. I am being told to restrict my diet...that means a lot of change for this bread lover...

Its all pscholigical. I WILL accept it and I WILL do what I need to but its so severe to me, its hard to just...come to grips with. I also am having a very hard time getting my parents and in laws to understand. My husband is awesome, he gets it, as do my kids, but everyone else looks at me like I am crazy and "buying in" to the newest and coolest diagnosis...

its hard.

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Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

Easier to pop a pill than to change eating habits.

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Easier to pop a pill than to change eating habits.

Yup, the "fix me" mind set.

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It took me over two years to convince my mom to get tested but she finally did, and guess what? She has celiac disease. I knew it all along, and I suspect that she knew too and didn't want to test until she was really ready to cope with the diagnosis. I, myself put off testing for almost a year after my youngest was diagnosed. I knew he had gotten it from me and I wasn't ready to give up my favorite foods just yet. Plus, I was so focused on him and his health that I didn't want it to be all about me (too).

My kids and I did a family tree to see how many of our blood relatives need to be tested, and the number was a staggering 56! (My mother has 12 brothers and sisters and they all have children). Out of those 56 only me, my two children, my mom, and my brother (negative!!) have been tested. All others have refused.

I remind them constantly on Facebook and our family website. I send articles and little tidbits about yummy gluten-free foods but it doesn't work. My cousin, who is more like a sister to me, just flat out refuses to test her kids. It's infuriates me because her youngest is sick a lot with celiac disease like symptoms and I worry about them. But what more can I do? I just get frustrated and then...let it go.

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My mother just showed me her vitiligo. Crazy that she will not get tested.

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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