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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is This Anyone Else?
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13 posts in this topic

Basically - until I was gluten free, I was in a complete fog. Spacy, detached - learning issues despite testing with high intelligence, perpetually confused, ditzy. I had trouble holding any but the simplest jobs. Couldn't think my way out of a wet paper bag, and later on, struggled with brittle Graves Disease which impacted my ability to do physical work. Had trouble learning to drive, following directions... constantly collided with things and dropped things. There was a long time that I was suspected of being on the autistic spectrum and or severe ADHD. I felt disconnected from my body to a very severe extent and like my thoughts and feelings were in pieces that I couldn't make sense of. I dropped out of high school, and struggled in college classes.

When my diet's handled, I don't have ANY of this.

Gluten issues didn't even begin to enter suspicion until 2007 when I started actually experiencing physical symptoms, though a sign could've been in 2004-2006 when I was on Atkins and mysteriously actually felt competent for the first time. Then the suspicion got shoved under the carpet again because I was found negative for celiac and my symptoms were chalked up to graves disease.

I recently went back on gluten free and find I feel a lot better.

I am a perfectly normal and functioning adult human being when my diet is under control. It doesn't change the fact that i am 38 and I've lost most of my life to being in a fog :/ I may have to repeat some of my coursework this semester because it was so bad before I went back on gluten-free.

Most recently, I lost two years on account of being sick (let go from previous job, had a flare up of my thyroid again, and couldn't go back to doing physical work) so I went back to school - but if I had to work, I have no idea what I'd do because I've been out of that field for a while now.

:/

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I lost many years due to this condition. I've got a job now, but it isn't optimal and I'm looking for a better one. It is going to be a long road. I'm so glad to have finally been diagnosed.

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Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.

Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.

Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.

However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.

I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?

Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

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Wow, guys, these posts make me choke up in tears. I too feel my last 20 years or so have been lost. I am so thankful I have finally found something that works (which is to give up gluten). I messed up royally in college, stayed at a job I hated, all because I had no energy or joy for life. I turned to alcohol for some bit of solace.

I ate my "nutritious" breakfast every morning, which consisted of a sandwich of whole-grain bread and soy burger, unintentionally poisoning myself for the first meal of the day...

I now feel so much better and rested during the day. I have only been gluten-free for three days, but I want to shout from the rooftops how much better I feel. Although I regret many, many decisions I have made while in the "fog" I am at least glad I feel better now and can have a better future.

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The first episode of (what I now know is) DH that I remember I was 15 years old .The first "problems" (as my stepmother would call them :rolleyes: ) I can remember I was age 8.

I was not "officially" diagnosed until I was 54.

That is A LOT of time between first symptoms and diagnose <_<:angry::(:angry::(:ph34r:

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Not my whole life. I lost my teen years to something else. I strongly believe I lost only my college years to celiac disease. I had a severe GI infection my first semester, during finals, and after that is when I believe I became gluten intolerant. I was not diagnosed, however, until years later and it severely affected my ability to live a functional life. Attending classes was extremely difficult. At one point I was in a wheelchair due to multiple stress fractures in my leg bones and thought I was going to be disabled for the rest of my life. I ended up only able to go to a community college taking 3-6 credits a semester for an AA degree. It's only now that I've finally gone back to University full time for my BS when my health is finally under control.

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I lost a lot of time to misdiagnosis and mistreatment, including the years most people are getting established in their careers and having children. When I first made the decision to go gluten free I was of course afraid that it would be another dead end and I wouldn't get better, but I was equally afraid that I would. I was afraid that if I had suffered for all those years when the answer was so simple I would become even angrier and more bitter.

Fortunately I was wrong. I experienced marked improvement very quickly and as the symptoms went away, so did all that anger. I can't get the lost years back. But if I would continue to lose more time to anger and resentment that would be on me. Life is too short to waste any time. All I can do is go forward from where I am and try to live each and every day to the fullest in the most positive way I know.

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Hi.I am 54. Have had alot of problems with my health, but could find no reason. I have fatigue, joint pain, leg cramps, cronic diareah, anxiety, panic attacks, brain fog, anger, depression, hyperthyoid. I suspect I have a glutten intolerence, but have never been tested. The doctors just labed me with irritable bowel, but that's not good enough for me. I really need relief. I am going to try going glutten free. I will let you all know what happens.

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These posts make me emotional too. All these symptoms are ringing so many bells. It's amazing to hear people talk about memory problems because usually people don't get it at all when I talk about memory issues. I don't remember, as another poster said, whole years, most of my childhood in fact. I've been complaining of a bad memory since I was a young teen, my dad used to say it was because I blanked out my childhood because of operations (plastic surgery and stuff) but it's continued. I started getting depressive symptoms in my teens too although it didn't explode (huge anxiety/depressive) until my 30s when I was also diagnosed with ulcerative colitis. In the past I have wondered all kinds of things about what I might have. I have never got many answers from the cognition difficulties which come with a low and yet don't really seem to come under the umbrella of depression. Three years of gluten free did make me feel a lot better but I don't think memory will come back unfortunately. I didn't have the depth of low during those three years that I had this year after a few months back on gluten (took months to put two and two together unfortunately) - now I'm convinced that for me, a major factor, even more than digestive disturbance is behaviour. It's a shame it's not easier to diagnose (without a clear diagnosis we can drift back into gluten) and that so many of us have take so long to reach the discovery but at least we have. These days I keep saying to everyone, whatever their problem, have you tried going gluten free?! :P

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PS: It can also be sad to think who we may have been without gluten and what we may have achieved/experience. I can only say now, after hanging out with some incredibly vibrant 70 year olds (I'm in my 40s) that there's still time for many of us to fulfil our potential now we are free - or at least on the road to recovery.

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I've lost quite a bit, like a lot of you. Career, Wife, child, life that I had built.

If I dwell on that, I will be lost.

I'm using this as a way of starting over.

I recall having a lot of good times when I built my first ME, building my new ME should be even better.

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Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.

Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.

Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.

However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.

I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?

Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

I am so moved by your post!! I can relate, most of my life was in a fog.
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As I read these posts I feel so thankful it's not just me.... Don't get me wrong, I would never wish this hel* on anyone. I spent so much of my life feeling like this was in my head though...... I didn't realize until I was a teen that something was wrong. Nothing made sense at school and I was hurting all the time, and so much of the time I couldn't explain what even hurt. I even resorted to self harm as a teenager and even as an adult at my lowest moments... I so badly wanted someone to make me better. After being in a fog of depression and pain, I spent 5 years REALLY sick, getting worse everyday until this last year when going gluten free and finally getting a diagnosis of celiac disease changed my life. I am thankful for my new found wellness, as I have never felt better. I grieve greatly for all the pain and missed moments and lack of memories this disease has caused. My beautiful 13 year old daughter texted me from school this morning, she needed some information for an assignment.... She needed to know how old she was when she walked and what her first word was. I am the kind of mom who would know that information off the top of my head, regardless of the fact I have 5 children. I was SO sad.... I guessed, good thing she can't remember either :) I understand now healing is a process that involves more than just my gut.

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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