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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? - 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 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 was just diagnosed on Monday. I'm in shock. I'm sad. I'm angry.

I'm angry because my primary Dr. didn't catch this. She is *known* for her integrative medicine approach, and has diagnosed other people I know. I just don't understand how she missed all my symptoms and never thought to test me.

I haven't been able to function well since Monday because I'm so wrapped up in emotions. Then I feel stupid and tell myself I should be grateful that I haven't been diagnosed with something much worse.

I have been reading about all the risk of celiac specific complications and it scares me. I've been doing a lot of crying.

Sigh. Just trying to accept it.

I'm also so stressed out about my children now. Do they have it, do they not have it? I wish there was a fool proof 100% accurate test for them.

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I was just diagnosed on Monday. I'm in shock. I'm sad. I'm angry.

I'm angry because my primary Dr. didn't catch this. She is *known* for her integrative medicine approach, and has diagnosed other people I know. I just don't understand how she missed all my symptoms and never thought to test me.

I haven't been able to function well since Monday because I'm so wrapped up in emotions. Then I feel stupid and tell myself I should be grateful that I haven't been diagnosed with something much worse.

I have been reading about all the risk of celiac specific complications and it scares me. I've been doing a lot of crying.

Sigh. Just trying to accept it.

I'm also so stressed out about my children now. Do they have it, do they not have it? I wish there was a fool proof 100% accurate test for them.

Hello and welcome, Schatz -

Let me start by saying that it's great that you're here. I've found so much wisdom and support on this forum. You're definitely not alone. *Hug*

The sadness, the anger, the "not being able to function"... I totally get it. I've been there. In fact, I still feel sad and angry sometimes - mainly because I'm 6 months gluten free and still having random issues that neither my Internist nor my GI can figure out (YET - there is hope).

My doctor missed my Celiac too - she told me that it was because I presented as "atypical". They thought it was my gallbladder at first so I was living on dry Cheerios and whole wheat crackers - trying to avoid fats & such. Ouch, to say the least.

Don't know if this is true, but I read somewhere that medical students get something like a 50 minute lecture on Celiac Disease during their academic career.

On the up side...I've been trying hard to be proactive in dealing with my issues - reading up on everything & then asking my doctors to check this or that thing out. I have a long way to go, but my point is that it seems that we need to be as well informed as possible - at least, I do. My doctor isn't an expert by any means.

Maybe there is a doctor in your area who is more in-the-know? Personally, I'm switching providers in December in hopes that my new doctor can deal with whatever (if anything) my current doctor is missing.

Please know this - in the 6 months I've been gluten free I've had a major REDUCTION in the pain, brain fog, fatigue, etc. Also, I know what I'm dealing with now - it's no longer a mystery - and I know how to get well (stay gluten free).

Like I said, you're not alone. You can read all over this forum how folks are healing. It's inspiring. There's hope. In the meantime, vent, vent, vent 'cause you're understood around here!

Sorry for the long ramble.

All best to you,

Pondy

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I was just diagnosed on Monday. I'm in shock. I'm sad. I'm angry.

I'm angry because my primary Dr. didn't catch this. She is *known* for her integrative medicine approach, and has diagnosed other people I know. I just don't understand how she missed all my symptoms and never thought to test me.

I haven't been able to function well since Monday because I'm so wrapped up in emotions. Then I feel stupid and tell myself I should be grateful that I haven't been diagnosed with something much worse.

I have been reading about all the risk of celiac specific complications and it scares me. I've been doing a lot of crying.

Sigh. Just trying to accept it.

I'm also so stressed out about my children now. Do they have it, do they not have it? I wish there was a fool proof 100% accurate test for them.

I know how you feel- I have had obvious symptoms since 1999. And only now have gotten the most I'm ever going to get without a biopsy - which is my Dr is convinced I have it but just can't prove it.

Two of my children have chronic gut issues that have been going on for years. And my mother dropped over half her body weight and the GI had her convinced she had bowel cancer and then came back positive for Celiac.

It can be such a difficult disease to pinpoint. I promise you it gets easier and once you get used to gluten-free you won't even notice it.

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Don't know if this is true, but I read somewhere that medical students get something like a 50 minute lecture on Celiac Disease during their academic career.

My dr told me 6 or 7 minutes- in their entire medical degree...

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i was diagnosed last year. i was so sad and angry i had to suffer so long and that people acted like i was crazy and healthy but i was sick and suffering and no one listened. i still am frustrated the doctors all missed it. though i do not know that they caught it someone else. they just did not seem to know about or focus on the possibility of gluten intolerance and celiacs. i think that is why they do not connect the symptoms and test us or even bring gluten-free up as something that could help.

i understood it as being gluten-free helped decrease the risks of having complications. even if the science says otherwise the science was wrong and failed me for years claiming i was healthy when i was not and a lot of damage was done.

the emotions can be overwhelming at times but i think it is normal since gluten-free is so counter cultural and incomprehensible to most people.

i also had a degree of relief to know i was not a hypochondriac and i was right all along that something was wrong. i was further relieved to learn if i eat the right stuff then i will be ok. i do not have to take a medication and it is not some deadly illness or something without a cure.

it might help to focus on reading and thinking about what you can do and the wonderful healing you can look forward to. it would probably help to read people's success stories i know they give me hope especially since i am still working to figure out what other foods are problems and heal my body.

i think about my family's poor health and the health problems that run in the family and it all makes sense but i cannot live their lives for them.

i wish i had never had gluten. i imagine it could be awkward to be a gluten-free kid since society is so gluten obsessed and addicted to it but it would have felt great to know i could have a high quality of life and not be sick and jeopardize my health. i would want my kids to be gluten-free even if they do not have gluten intolerance. the body just does not seem built to digest gluten. they could always get tested later or choose to have gluten. but if u never have it u do not know "what u r missing" or had to give up. also kids r growing so they are so vulnerable to allergies and problems with foods so i would want to protect them. also the foods we should be eating fruits, vegetables, meat, fish, beans are naturally gluten-free and natural (vs processed stuff that is bad for us).

know u r not alone. and many of us share similar experiences.

i think breaking it down into steps might help u from being so overwhelmed like u r now by looking at everything at once and the worst possible scenarios.

best wishes!

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Thanks everyone. I've been up and down these past few days. One minute I feel optimistic and the next I'm crying as if I'm doomed.

I've decided that the whole family will go gluten-free. I'm just trying to decide if I should have them tested first.

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i understand that. I had IBS and Whatnot (what my doctor originally called my problems), then i got really sick and they said it was just a "virus" or it was just, god forbid, my mind playing tricks on me. Eventually was diagnosed after 4 months of hell + how many years i suffered with D.

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If you want to get your family tested (and they suggest all first degree relatives be tested) it needs to be before they go gluten free. If they go gluten free then the test will be inconclusive. The tests are already sometimes give false negatives, but it wont be able to be positive if they aren't eating gluten.

I totally understand the ups and downs. It took me a while after I was finally diagnosed to really accept what had happened. Even though the testing process took six months for me. It was like I couldn't stop thinking about it.

As to the doctor's training. I talked to a friend of mine who just got out of medical school, and she was like "yeah, celiac, a disease that kids get and leads to failure to thrive." That was the only context that she knew about it in. Not that it could develop in adulthood. Yikes.

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First, Welcome to celiac.com! It is the best possible resource for the newly diagnosed, as well as veteran Celiac or Gluten Intolerant.

Second, You are mostly definitely not alone with your frustration, anger and fear. I was diagnosed at 43. I started going to doctors with mild versions of the same symptoms I was diagnosed from when I was 19 years old! I'd seen every discipline and every test they ran came back "normal" - in my early 40s I became so sick that I kept on my most recent primary doctor - a younger woman who was the first doctor whom didn't give me the "its all in your head" look). It took over a year and well over 50 blood tests before my tTG-IgA was run. Talk about frustration - as we started looking for more and more rare diseases I was a basket case.

When finally diagnosed I was very relieved to finally have a diagnosis. But relief was only a small part of what I was feeling. I was a skeptical (this forum helped more than anything else to appease my skepticism), angry (directed at the many doctors that had dismissed me or disregarded many of the symptoms I spoke of over the years), fearful (both of the long term effect of not being diagnosed along with terrible fear for what this meant to my children).

At the time I was diagnosed, my children were 25, 15, 13 - all of whom tested negative for celiac (not surprising as my test was only weakly positive at 43 - have all had health problems over the years. The 25 year old was diagnosed with Lupus, RA and Fibro as a teen (may have always been Celiac), 15 year old had chronic GERD, allergies and "flu" bugs, 13 year old has had minor stomach issues and unexplained weight gain (this is what I was like as a child). ALL of them have improved gluten-free (2 of 3 chose to go gluten-free to see if it would help their health problems, 1 remains a gluten eater - as we evolved into a more gluten free home he too had improved health - he'll likely be gluten-free one day when he is ready).

Additionally, I have two grandchildren, currently 4,2 - the 4 year old was the first to go gluten-free when I was diagnosed as he had a lot of stomach issues as a baby. He was the first confirmation I had that the diagnosis of Celiac was true - being so young he improved immediately - all of his digestive issues disappeared.

I know in my family that having the kids tested was needed, but brought more frustration - I did find a bit of peace when I had celiac gene testing. My celiac doc recommended it because my kids all tested negative, but were experience positive effects to gluten-free. I wish this test would have been run with my celiac panels - turns out I have a double copy of one of the celiac genes - which means all of my children have at least one copy - it does not mean the will definitely develop celiac, only that they could. Time has shown that they all inherited my digestive system - definitely not a trait I wish I'd passed along.

You are ahead of me in that you verbalized your concerns early on - it took me a long time to process them all. The support I found here whether it was asking for help or learning all the ins and outs of gluten-free living that I found here is invaluable.

So, again welcome - receiving the diagnosis is daunting but it really is good news in that you now have the power to heal and it doesn't require medication, only learning to eat gluten-free - this will bring other frustrations, but you are not alone anymore - simply post your questions and concerns here.

Take time for yourself - learning to live gluten-free was a major challenge for me, but it definitely got much easier with time and knowledge.

Hang in there!

P.S. My doctor also told me there was only a brief mention of celiac during her training - she showed my her note journal from med school with the entry that was a small paragraph. I've read most doctors get very little information about nutrition as well - crazy!

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I totally understand your emotions. I just got my biopsy results back yesterday with flat villi. Although I probably have had this for 20 years, I asked my doctor about it in 2008. She practically laughed at me and said I did know what I was talking about and to quit reading the internet. Now, at 43 I have had severe permanent damage due to arthritis and will probably have to be on B-12 shots for years, maybe the rest of my life.

I cried when I found out and feel angry sometimes when I think about that doctor. I have contemplated writing her a letter to at least let her know how common celiac can be.

As for the kids, I have a 6 and 9 year old. I am also terrified to get them tested but I know I have to for their health and my peace of mind. They have pizza parties at school and kids are always bringing cake or cupcakes on their birthdays. What if they can never be a part of that again? I will deal with it and I know their small school will be supportive but the though makes me want to cry.

I think the best thing to do is start finding good foods, keep reading, and find support here and through family and friends. Now that we have the knowledge to stop poisoning ourselves with food we can get on with life and start feeling better!

Good Luck!

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when I was diagnosed, I wanted to call every single doctor I had ever seen in my entire life and stuff the photos of my flattened villi in their faces. Not because I was angry at the diagnosis, but because I was angry at all of them, that for 40+ years I'd been misdiagnosed and what would my life have been like had they got it right when my symptoms first started when I was a kid? My diagnosis was a blessed relief, I was actually quite happy with it. I could finally tell people "YES, I'M SICK! SEE!" :D

And really, there are soooooooooooooooooo many wonderfully yummy gluten free foods you can make, this really isn't a sacrifice, it's a gift! I made gluten free cocoa crepes for dessert last night. They were awesome B)

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My boys are going to be tested and they will have the genetic testing as well. That will give me some peace of mind. In the mean time they have to continue eating gluten, and having it in my house makes me shudder. I want to get it all out! There is no way I can have gluten in my kitchen. With three young boys who do not understand or remember to wipe counters, not stick the knife back into the cream cheese, not drop crumbs all over the floor, etc. it would be too difficult for me to not suffer from cc. So the sooner they are tested the better!

I'm disappointed with my parents. I know with out a doubt my mother is celiac, and I got the genes from her. She has had major GI problems ever since she was a child. She has always had migranes, and has a child had seizures. She takes depression meds. She is lactose intolerant. Not a day goes by that she doesn't take Immodium and motion sickness pills for nausea. She takes them every single day. Now, that I've been diagnosed celiac, I told her I have no doubt in my mind that she has it and she should be tested. She refuses. She blows me off. She told me she has starting drinking kefir, and that she feels so much better so even if she has celiac, she has found the answer. She says she can continue to eat gluten as long as she drinks kefir because it helps her feel better. Sigh. Whatever then.

At least I have control over *my* life and (for now) my children.

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I think it is good that you are sad about this. Don't get me wrong with this, I need to explain first. When I was first diagnosed I tried to just take it in stride. I immediately went gluten free and tried very hard not to look back. I didn't let myself get sad about it, I didn't let myself feel pity and I went on like this for a few months. However, one day I went to church and it was the first Sunday with communion that I had been to since diagnosis. I was devastated when I couldn't participate and I had to leave early. For weeks after I felt so down and for me it is was much harder because people had seen me be so upbeat about the diagnosis that they didn't understand when I broke down later.

I think it's good for people to for lack of a better word "mourn" gluten. I think they way I tried was worse, it's almost as if ignored what was really happening and just tried to fix it as fast a possible without really addressing other issues that go along with Celiacs. I would say let yourself be sad about it, and it's okay to be scared about what could happen. My sadness and fear over it eventually turned into my motivation for staying gluten free. Even after a year and a half, I'm still sad sometimes and I am still terrified of developing another disorder. But those things help keep me motivated because I know by staying gluten free I am greatly reducing my chances for other illnesses and I feel much better now.

Good luck with everything!

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