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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.

"it's All In Your Head!"
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21 posts in this topic

When I was a kid I thought (along with doctors and other family members) that my Mom was a hypocondriac. One day she would complain of a stomach ache. The next day she would complain of a back ache. The day after that her feet were tingling. At least twice a week she complained of headaches. Mom had a king-sized case of chronic insomnia, and she also suffered from psoriasis for years. We all thought it was all in her head.

Years and YEARS later, she was diagnosed with celiac disease.

I keep reading here about folks who have gone through the same thing. While I have no hope of educating doctors who SHOULD know better, I thought that perhaps any of you who have family members who doubt your symptoms are real should show them this. Maybe you could print it and hand it out to all of them and they'd finally believe you:

http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=symptoms

It's bad enough to suffer the physical symptoms, but to have loved ones doubt you makes it so much worse. I will forever feel guilty for accusing my Mom of being "crazy". Maybe if all of our family members would learn about celiac it could prevent them from going through the same thing Mom and I did.

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I thought I was crazy. All the illnesses and symptoms I have over my life, I honestly has to ask myself if I was "faking" or somehow doing it to myself.

My father has numerous health issues, fibromyalgia being the most prominent. I myself think he has celiac. After my diagnoses, he got a blood test, but apparently it was negative. I know that isn't completely conclusive, but he is so set in his ways with a terrible diet, I dont think he'll change.

Now that I have really been struggling with heightened celiac symptoms, especially the aches and pains and fatigue, I understand him more as well.

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My mum was diagnosed with M.E (chronic fatigue) in her 40s, when no one knew what it was and she got sent to a shrink. It was tough as a teenager to see it. I knew she was ill.

Now I know about celiac, I think it may be that. She doesn't want to get tested or see a doctor and bring it all up again. I think she is afraid after her experiences with doctors.

I spent years being told I was over sensitive, and didn't handle pain or stress well. Or that I was fat, or tired because I have children.

Well done bartfull for getting it out there.

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I thought I was crazy. All the illnesses and symptoms I have over my life, I honestly has to ask myself if I was "faking" or somehow doing it to myself.

Ditto! When enough people tell you it's all in your head, and doctors act like nothing is wrong, it's easy to start believing it.

I don't think anything I do will make my parents have an ounce of understanding about celiacs. They have always been unsympathetic people, and let me know from an early age that if I'm sick I'm being an inconvenience to THEM. When I told them I had celiacs their response was "Oh, okay." They've never mentioned it again since, and don't care at all. My mom even told me that she doesn't remember me ever mentioning all the medical test I've had over the years, which is BS. But they make a huge fuss when my sister-in-law has a headache and GI issues. Go figure.

Well, I think I over-vented there. :lol: Fortunately I have a great husband, and enough supportive co-workers that they outnumber the naysayers. Just the other day I told a coworker what was causing all my health problems, and she said "I knew it had to be something like that. There was no way you were making it all up." It felt great to hear that.

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LOL, well if you can't vent on a celiac board, where can you vent, right? :)

One reason I struggled so long was because I was raised in a big family, not much money, and going to the doc was discouraged. I still feel guilt when having to go for expensive testing.

I fully expected my mother to be difficult with my diagnoses. (I'm a grown woman, but she and my father live close by) I was pleasantly suprised at how supportive she has been, and how hard she has tried to learn.... after some intial "Well, you can have a little gluten, right? That won't hurt you.". She is now wondering if she has celiac or some gluten intolerance, because of some GI issues.

However, it was a long, long road to get to a good place with our relationship in general, and I got plenty of grief over my health issues in the past. So, I'm sympathtic to your struggle! Best of luck to you.

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When you hear people tell you it's 'all in your head' enough times it's very easy to start believing it. For years I lived with undiagnosed Hashimoto's and my symptoms were put down to getting older, homesickness, as I'd just moved to the US even though my job took me back to the UK 3-4 times per month. I also lived with my GERD was told to de-stress my life and cut out spicy foods!! I was eventually diagnosed with a large Hiatus hernia and Barrett's esophasgus! The hashi's was diagnosed after 2 of what turned into six miscarriages and had it been treated when I first started having problems I might well have gone on to have a successful pregnancy but alas it wasn't meant to be for me. I am depressed I'll admit that but it's as a result of not getting answers to what is going on with my health. If an antidepressant would make all of my symptoms go away I'd be the first one to take it but I truly believe that that isn't the problem.

I think I'll lose it if another Doctor tells me it's all in my head :)

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OH i know that all too well.

Its all in your head here are some psyhc meds... >.>

or

You just have the flu, stop being such a baby.

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Oh yes, getting older. Since I turned 40, it seems every time I go to the doctor I have something which is very common in women over 40. Grrr

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I think I started falling apart at 35. First gall bladder, then PCOS, diabetes, moved on to rare lung birth defect (dx at 40 and removed 1/2 lung). Now more tummy issues than normal. Most of time feel better with low blood sugar compared to how I feel after eating.

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Oh yes, getting older. Since I turned 40, it seems every time I go to the doctor I have something which is very common in women over 40. Grrr

I was told my newer symptoms of night sweats and waking up with a rapid heartbeat was probably peri menopause (I'm 39). They did a blood test and found out I wasn't peri menopausal, but severely Vit D deficient. So I was prescribed weekly Vit D supplements, and left it at that...

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As I was dying a slow death for nearly 3 years, I wrote in my journal : "I am forgetting things and it scares me.

I feel so sick, tired, and in horrid, excruciating pain. What the hell is going on? I'd rather be dead than live like this!" (but I did not really mean it, apparently, because I kept fighting for an answer.)

I cried a lot (no, more like wailed) from the bone/joint and muscle pain and burning nerve pain. Tests revealed nothing. MRIs, EKGs, EMGs--all normal. (but those tests do not find small nerve fiber neuropathy, which celiacs often have)

But I wonder how many people are in mental health wards because their brain function was affected by celiac. I wonder how many people are given a fibromyalgia DX and left undiagnosed for celiac. My doc and I have discussed this and we speculate... millions? I did not even tell people half the stuff I was experiencing for fear they would think me mad. But when a few other celiacs told me they also had these bizarre symptoms, I felt validated. And sad for them-- because they were told they were making it up. As I suspect the dozens of doctors I saw thought about me (really? who "makes up" a 90 lb. weight loss?? hair loss? vitamin deficiencies? dehydration? migraines?) I did not tell them I could not drive or cook or read much anymore. My brain was that messed up.

I was burning from mouth to rectum and here is what the GI's NP yelled at me: "Take these drugs. It's "just GERD". You don't have sprue. The test was negative."

And I told my sweet hubs: "Something is very wrong with me". (He could see it; he helplessly watched me deteriorate and quietly begged doctors "Do something. I just want my wife back.") and I swear I felt my heart crack hearing him say those words.

But the doctors said: There's nothing wrong. Just osteoarthritis and some degenerating discs.

Get some exercise!

Do some volunteer work!

?? huh??

I can't even dress myself or walk the length of my driveway without gasping for breath. I had to stop going to the gym because I was unable to walk a treadmill because I could not feel my feet or hands anymore.

You're just sad, anxious and depressed (not my personality at all)

you're anorexic (me? I was FAT! but, then I wasn't. But,oh how I once loved food)

you're just grieving (my beloved Dad had just died)

you're menopausal (I had a hysterectomy years ago)

you have IBS and GERD (no, I do not)

you have Fibromylagia (nope)

you have spondyloarthropy (definitely not)

and maybe 10 other syndromes

No, I don't (I said to myself).

I heard "take these drugs" - see you in six months (there's a box of drugs in my closet I tried and had side effects from and refused to take)

Get a scooter & accept your fate!!

and my favorite: It's "idiopathic".

No, it isn't. It had a REAL CAUSE.

When I figured it out myself and finally was Dxed, I wrote to a few of those doctors. They don't care and they will never apologize.

I want to shout from the rooftops: there WAS TOO something very wrong with me (told you so :P ) and I knew it !! and I would not go down without a fight.

As for family members, they saw me dying and so, they do not doubt it's "real" , but this does not convince them to be tested themselves, despite their obvious symptoms.

I know my Dad died from this thing as well as I know my own name and I am angry that no doctor--at the prestigious Lahey Clinic--could see it for 8 years. He had dozens of blood transfusions for severe anemia and GI issues his entire life, and I am filled with guilt that I could not figure all this out in time to save him.

So, instead of letting the anger eat me alive and rob me of any more days, I choose to channel all the anger (and mistrust for doctors) into something positive.

I try to reaffirm to others who are seriously ill and losing hope that it is not "all in your head". I believe you.

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I saw a blurb about the Mayo Clinic recently where they said they have 3,300 doctors and treat 500,000 patients a year. That Works out to about 151 patients for each doctor, each year. If they work 231 days a year (365 minus weekends 104, -10 holidays - 20 vacation days = 231 work days), they would have 1.5 days for each patient. Assuming they consult on one other doctor's patient per day, that is double the number of patients effectively, so less than a day per patient total is what they spend on a person. It seems to me there are too many sick people and too few doctors treating them. I am surprised they don't just diagnose everyone who walks in the door with celiac disease by default and at least eliminate 1% of the work load right away. But I guess psych meds make more money for them. Or IBS meds, as they do tell a lot of people they have that too. I imagine an easy to sell diagnosis that gets someone out the door fast is a popular option for doctors.

That doesn't mean it is right of course, or that it doesn't just suck like a Hoover vacuum. The end result is poor medical care for millions of people each year.

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But if you consider that most doctors spend less than 15 minutes with a patient during an office visit, that 1.5 (8 hour) days with each patient at Mayo equals approximately 48 office visits.

The Mayo clinic in Rochester Mn. is in my opinion, the very best medical center in the country. I know many people who have gone there after all the other doctors they have seen threw up their hands and gave up. Each one of these people got the diagnosis and help they needed to get back to good health.

I believe in the Mayo clinic, and if I ever had a problem that couldn't be solved, it is the ONLY place I would even consider going.

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That doesn't mean it is right of course, or that it doesn't just suck like a Hoover vacuum. The end result is poor medical care for millions of people each year.

amen, brother.

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I thought I was crazy. All the illnesses and symptoms I have over my life, I honestly has to ask myself if I was "faking" or somehow doing it to myself.

That is what I thought? How? How can multiple doctors all in different fields tell me it was all in my head. So many different issues, all not real, all made up. For many years I was treated like I was mad, and felt the same way. The Doctors really convinced me after awhile I was the one causeing all of this pain and I fell into a deep depression.

I just within the last two weeks have found out that I had Celiac, only after eight years. All I know is there sure is alot of crazey people out there. They just don't know why yet. We will all get through this...we have to. We can let something like the wrong piece of bread kick are ass.

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Guys, I even "played the game" and went to a psychiatric doctor so she could give me some xanax so I could get some sleep. I had raging insomnia and my PC doc wanted me to consult with her. Okay, sure.

I just kept telling her, "This isn't like me, honest. There is something really wrong with me and no one can tell me what it is".

She said to me "You don't have a clinical psychiatric problem, but you do have significant pain. This would make anyone depressed."

Then she said these words "Do you have food intolerances by any chance"? I went and had allergy testing done and a celiac panel. All negative. I did not put it all together until another year later. I test negative on blood panels, like many celiacs do.

After my DX, I called her and told her it was celiac all along causing anxiety and depression and that often, some even have panic attacks. She said she treated so many patients with these issues and never thought of celiac as a culprit and from then on, she was going to test them all for it.

I hope she has followed through with her promise.

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It took 7 years before I was diagnosed with Endometriosis. I even had an Indian doctor, who was filling in at the time, tell me that the pain I had was because I had experienced pre-marital sex. I should go to Jesus for forgiveness and I would be healed. This was a leading clinic in Atlanta, Georgia! I was raised in the church. No amount of prayer stopped the progression of pain I have experienced through the years.

I went to Dr's for years until finally my family Dr. told my OBGYN to schedule an exploritory surgery, or HE would. I was in the next Monday. They found the problem.

After 5 years of being married and complaining about such terrible pain during menstruation and other problems, my husband never believed me really. In a panic and in more pain than I could stand anymore, I drove myself to the emergency room, crunched over the wheel the whole way. They sent me home with a valium. Finally, several months later an OBGYN did a surgery. He discovered that my bladder, colon, right ovary, stomach, uterus, and gall bladder were all bound together by adhesions (thick scar tissue)and my colon was almost completey constricted. Every time I had my menstrual cycle EVERYTHING burned and pulled because of this. Only then was my husband a bit understanding when he found out what was really going on. On top of this, Endometriosis.

I am just discovering the links to gluten. I have discovered how good I can feel without gluten and they are testing me for this. Along with pains of all kinds in my body, arthritis pain, extreme exhaustion, swelling, constant bowel problems, infertility, and a lot of endo pains, what amazes me most of all; I still go to work every single day and work my butt off. It sucks, but I do it. What sucks even more is the silent suffer. No one even really knows or can even comprehend how much pain you actually have to put up with, how much you really have to do in order to function. But you do it. You just do.

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No one even really knows or can even comprehend how much pain you actually have to put up with, how much you really have to do in order to function. But you do it. You just do.

Your post moved me to tears. I can honestly say I "feel your pain" and frustration because I lived it. I had a total hysterectomy because of the mess I was in. I could never carry to term.

It is a shame your GYN missed this simple diagnosis for so long and that anyone doubted your level of pain. Sorry, honey. :(

There are many GYN issues, including endo and painful periods, infertility, frequent miscarriages, delayed menarche and early menopause associated with gluten and celiac.

http://www.ncbi.nlm.nih.gov/pubmed/21840904

http://www.ncbi.nlm.nih.gov/pubmed/19400413

http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Do-Celiac-Women-Suffer-More-From-Pelvic-Pain-Dysmenorrhea-Or-Endometriosis.htm

http://www.ncbi.nlm.nih.gov/pubmed/7988065

http://www.ncbi.nlm.nih.gov/pubmed/20017709

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Wow, reading these posts actually made me cry. I can relate to so many of your stories. I have been tested for so many things and not much has come up. I am going to do a home test this week and regardless of the results, ask the dr. to do some more blood work to screen for celiac disease.

My sons' pediatrician routinely screens every child for Celiac Disease whether they have symptoms or not. I really have to take my hat off to him for doing this especially after reading more about doctors and not diagnosing Celiac Disease.

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This is so perfectly written. In the sense that I fully understand, I can fully relate...and it made me cry. I just went through all of this. I'm still going through it. I could relate to every word you wrote. I'm glad that there are people like those of us who fight even when we're down so far and for so long...because we fight for answers, we are able to help others and spread the knowledge. But this...your post made me cry...out of sadness AND happiness. Sorry for your loss of your dad, sorry for the crummy stuff you went through, sorry for what your husband had to see you go through....but happy that you were able to figure it out and that you fought for your life. I hope you continue to heal well! 

 

As I was dying a slow death for nearly 3 years, I wrote in my journal : "I am forgetting things and it scares me.
I feel so sick, tired, and in horrid, excruciating pain. What the hell is going on? I'd rather be dead than live like this!" (but I did not really mean it, apparently, because I kept fighting for an answer.)

I cried a lot (no, more like wailed) from the bone/joint and muscle pain and burning nerve pain. Tests revealed nothing. MRIs, EKGs, EMGs--all normal. (but those tests do not find small nerve fiber neuropathy, which celiacs often have)

But I wonder how many people are in mental health wards because their brain function was affected by celiac. I wonder how many people are given a fibromyalgia DX and left undiagnosed for celiac. My doc and I have discussed this and we speculate... millions? I did not even tell people half the stuff I was experiencing for fear they would think me mad. But when a few other celiacs told me they also had these bizarre symptoms, I felt validated. And sad for them-- because they were told they were making it up. As I suspect the dozens of doctors I saw thought about me (really? who "makes up" a 90 lb. weight loss?? hair loss? vitamin deficiencies? dehydration? migraines?) I did not tell them I could not drive or cook or read much anymore. My brain was that messed up.

I was burning from mouth to rectum and here is what the GI's NP yelled at me: "Take these drugs. It's "just GERD". You don't have sprue. The test was negative."

And I told my sweet hubs: "Something is very wrong with me". (He could see it; he helplessly watched me deteriorate and quietly begged doctors "Do something. I just want my wife back.") and I swear I felt my heart crack hearing him say those words.

But the doctors said: There's nothing wrong. Just osteoarthritis and some degenerating discs.

Get some exercise!
Do some volunteer work!
?? huh??

I can't even dress myself or walk the length of my driveway without gasping for breath. I had to stop going to the gym because I was unable to walk a treadmill because I could not feel my feet or hands anymore.

You're just sad, anxious and depressed (not my personality at all)
you're anorexic (me? I was FAT! but, then I wasn't. But,oh how I once loved food)
you're just grieving (my beloved Dad had just died)
you're menopausal (I had a hysterectomy years ago)
you have IBS and GERD (no, I do not)
you have Fibromylagia (nope)
you have spondyloarthropy (definitely not)
and maybe 10 other syndromes

No, I don't (I said to myself).

I heard "take these drugs" - see you in six months (there's a box of drugs in my closet I tried and had side effects from and refused to take)

Get a scooter & accept your fate!!
and my favorite: It's "idiopathic".

No, it isn't. It had a REAL CAUSE.

When I figured it out myself and finally was Dxed, I wrote to a few of those doctors. They don't care and they will never apologize.


I want to shout from the rooftops: there WAS TOO something very wrong with me (told you so tongue.gif ) and I knew it !! and I would not go down without a fight.

As for family members, they saw me dying and so, they do not doubt it's "real" , but this does not convince them to be tested themselves, despite their obvious symptoms.

I know my Dad died from this thing as well as I know my own name and I am angry that no doctor--at the prestigious Lahey Clinic--could see it for 8 years. He had dozens of blood transfusions for severe anemia and GI issues his entire life, and I am filled with guilt that I could not figure all this out in time to save him.

So, instead of letting the anger eat me alive and rob me of any more days, I choose to channel all the anger (and mistrust for doctors) into something positive.

I try to reaffirm to others who are seriously ill and losing hope that it is not "all in your head". I believe you.

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This is so perfectly written. In the sense that I fully understand, I can fully relate...and it made me cry. I just went through all of this. I'm still going through it. I could relate to every word you wrote. I'm glad that there are people like those of us who fight even when we're down so far and for so long...because we fight for answers, we are able to help others and spread the knowledge. But this...your post made me cry...out of sadness AND happiness. Sorry for your loss of your dad, sorry for the crummy stuff you went through, sorry for what your husband had to see you go through....but happy that you were able to figure it out and that you fought for your life. I hope you continue to heal well! 

 

Hi Megzydee,

I appreciate your kind words and yes, I am still healing, but I have come so far and I am grateful for every day.

I am not at all the sick and dying woman I was. I was able to return to the gym after 2.5 years of rehabbing my wasting painful muscles and it feels good to be able to do "normal things" once more! :)

 

I am sorry that you, too are going through this and I hope you get answers soon so you can heal too.

 

If there is anything I can do to help, please call on me.

Welcome to the forum!

IH

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