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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.

Anyone Else Feel Like They Were Trained To Ignore Their Body?
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15 posts in this topic

I'm newly diagnosed, new to the diet and going through the process of looking back over the years and going "Aha!", when I think of how long celiac has been affecting me. I'm 35 and I can't blame the doctors from my childhood in a smaller town in the Midwest for not recognizing my celiac. But what makes me feel so hurt and angry is how long I've been taught to just ignore my body and be a good girl and shut up.

I'm sure celiac started in my childhood. I would have stomach pains and vomiting, migraines at a very young age, frequent throat illnesses and even mono at six that almost killed me. Other than tonsillitis, most of my issues were attributed to psychosomatic illness, stress. I had a kind of rough childhood. I also had very weak teeth and didn't menstruate until I was 14. I've always had a big belly but been really skinny everywhere else.

I had my first scary abdominal pain at 22 and went to the ER because I thought I must be having an appendicitis or something. They gave me a pregnancy test (I was not sexually active, but they didn't care!), checked me for cysts and gave me morphine. It was a teaching hospital and I heard the senior doctor outside my curtain telling his student, "She's just some anorexic college student who doesn't want to take her exams."

So it went for the next thirteen years. Maybe it's gall stones? Ulcer? Eh, forget about it. I'm very lucky because I didn't get terribly sick like many do. And I was able to have two healthy, full term pregnancies for which I am so, so grateful now that I know what many celiac women go through. Of course I had to pay thousands of dollars to a fertility specialist for my second pregnancy for "unknown fertility issues".

It's just so bittersweet for me now. I'm literally laughing sometimes when I think, "I'm not crazy after all". But I just wanted to take a minute to feel sorry for myself and sad for those years when I didn't take care of myself. I had a fluke accident with an IUD a few years ago. It actually ruptured my uterus and went inside. I kept calling the nurse at my OB's office and she'd say, "Cramping is normal". I could tell she was annoyed with me and I was ever so polite but she'd kind of sigh and say, "Take some advil" every time I called. It wound up tearing through my uterus three times, in, out, in. That to me is what a life of undiagnosed celiac is. Being able to go through the kind of pain that should send you to the hospital and ignore it, because we've been taught to ignore our bodies for so long.

I bet what I'm going through is

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^^sorry, meant to say, I bet what I'm going through is common and it makes me feel sad and frustrated for all the people out there now, when doctors really should know better, who are being shushed and ignored.

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I think you are amazing and am so happy you've found the answer to your illness. And I couldn't agree with you more.

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You post hit home with me! Oh, the tests I have had because my doc didn't think of celiac or when I finally thought of it, she didn't believe me.

I have had

-lots of 'female' examinations

-my gallbladder checked out & ultrasounded

-3 colonoscopies in 20 years (different docs as I lived in different places)

-all sorts of reflux meds

-joint pains and blood tests to determine why

-laproscopy

-headaches and some vision issues

Then 10 years ago I got exteremely sick with a bad virus, couldn't keep food in, lost 5 pounds I didn't have to lose - ended up getting another scope to look for IBD or ulcerative colitis. By the end of the week I was in the ER getting two bags of fluids IVd in and a shot in my butt to stop the spasming of my gut!

It took me a year to learn how to eat without getting sick (some denial too of course). Negative blood test. Endoscope...well, my doc didn`t tell the gastro to look for celiac, only GERD damage...by then I was essentially gluten-free anyway as it took a few months to get in for the scope.

Huh.

THese days - essentially no GERD (reflux). Joint pain issues but stomach issues mostly gone - dairy & I don`t agree much but I eat carefully without gluten.

My doc has since retired and my new one doesn`t seem to totally trust my self celiac diagnosis but who cares - I told him I could be a gluten detector and I have set up my kitchen and life to avoid gluten. At least I know what to do.......so tired of feeling like a hypochondriac !

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^^sorry, meant to say, I bet what I'm going through is common and it makes me feel sad and frustrated for all the people out there now, when doctors really should know better, who are being shushed and ignored.

You are absolutely correct, it is all to common.

I was quite angry by the time I was finally diagnosed after being a "very good girl" as a child/teen followed by dismissal of symptoms by countless doctors for decades. On the flip side I was extremely relieved to know that food, rather than medical intervention could improve my health.

This forum is the best way I've found to spread the word that we need to trust our bodies and hold our doctors accountable - it is my belief that every person that becomes properly educated with regard to Celiac Disease will make a difference.

My primary doctor whom is relatively young was taught in medical school that Celiac Sprue was only children presenting severely underweight with slow growth and could outgrow the condition - shameful. She and I learned the correct details of Celiac Disease together. Nutrition was also a brief footnote of her education. She now tests all patients presenting with non-specific symptoms for Celiac Disease and nutrient deficiencies.

One person, one doctor at a time - things will change. That's my hope.

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Hi Megsybeth!

It is amazing that so many things get blamed on "psychosomatic and stress issues"...Enough to scream when you are hurting so bad and no one listens to you!

We all have the times that we have to feel bad about the time in pain and misery--being a "good girl" and such!...When we find our "fight" and quit being quiet, we find empowerment! That is what I hear you finding again! Anger is great for us--so much better than thinking we are "crazy" or some such thing! :)

So Welcome to this site! I know you will find answers and confirmations from people who are positive, encouraging and have more knowledge than I have found from any doctors I work with...I get along with my Doc's...but I have to tell you, that I have learned more here--than anywhere else!

The IUD thing is pretty scarey sounding actually! Being told to take Advil when your uterus is being ripped up is ... horrendous! (It took me a minute to find the right word for it :rolleyes: )

I'm glad you found your way to the site! You will be amazed at the support you receive! :D

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Ruptured uterus? Ouch! You've definitely got a high pain threshold now. (hug)

I'm with you on this! I was trained since childhood to ignore symptoms since the doctors repeatedly told me there was nothing they could do about it. For me, celiac was present at a very young age also. Stomach pain was the norm. Ditto with the migraines. I did everything with migraines... just a little slower.

I too have an extremely high pain threshold now. I've had a bad back for years and years (doctors once again said they couldn't help) that eventually ended in a ruptured disc and some paralysis along the sciatic L5 nerve. That nerve dying was the only time I was floored with pain. Truely felt like fire. I had to crawl. My family was outside and by time they came in I could move. I didn't bother going to the hospital because they never help anyways...sort of wish I had now. :rolleyes: LOL

Doctors have not helped me with anything. I go to the doctor strictly for his lab sheets and prescription pad; if I had my own (and some pharmacutical knowledge) I would avoid him entirely. As it is, I know I need to see him for his drug knowledge. Heck, I can't even figure out how to spell pharmacutical. LOL Pharmecutacal? Pharmicutical? LOL

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In my experience, "c" is always pronounced "k" when followed by a "u", so therefore it has to be pharmaceutical. :D

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In my experience, "c" is always pronounced "k" when followed by a "u", so therefore it has to be pharmaceutical. :D

Ah yes! I see it now. LOL :P:lol:

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Oh yes. Ignore ignore.

I used to have a high pain threshold. However, after three years of DH, and the adrenal decimating steroids to get rid of it, I find I have a very LOW pain threshold now. I read something about how chronic pain sufferers can actually become more sensitive to pain. I think I fall in that category now. I'm sure some of it is a mental response - so I try to control that; however, there is also a heightened physical response now, too.

It is also shocking to reflect (when I do experience pain) and realize how much of my life was riddled with symptoms and pain.

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Yes, that was life as a child. Ignore it all. Ignore all pain. Ignore feelings like anger or depression. Ignore bullying. Ignore sexuality in all of its manifestations :blink: The only thing you weren't allowed to ignore was what the neighbors would think :lol:

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Oh boy, i've been there :)

My major "IBS" as they called it symptoms started when i was 12. Randomly out of no where i'd get hit with "D" really bad, major cramping, feeling like i was going to pass out, etc. I would have to map out the bathrooms when i went out and about and always took pepto bismol before i went anywhere.

At around the same time, my gallbladder started acting up (didn't know this until much later). It would hurt so bad i couldn't breath at times.

Major joint pain. Checked for arthritis, nothing came back. Was told that my knees weren't properly alined with my body and to loose weight.

I gained weight rapidly for several years reaching my peak at just under 190 (i'm 5'4'' so yeah).

Then i got hit majorly with the flu. Went home for a week (was at college at the time). The next week my "D", vomiting, and fever did not go away, so it must be an infection right? I was given an antibiotic and told to take a benadryl for my nasal drip. An hour later, i had an allergic reaction so i got the honors of sitting in the ER waiting room for several hours. Was told then that i needed to grow up and deal with it (huh?!??).

Thus began my downward spiral. I lost about 40 lbs in little over a month. I could not keep hardly anything down. My "D" had gotten to the point where i had to wear a pad everywhere and there were many a time when i nearly didn't make it :(

Then over spring break i went and saw my doctor. She was convinced i was having panic attacks and gave me meds that made it worse (in reality my GERD was uncontrolable at the time, my side was painful, i had major "D" and vomiting, and my throat was so raw it hurt to swallow).

Fast forward a couple of weeks, i went and saw a nurse practioner. She was the first to give me a full exam. Ran some blood tests to check the appindix, check for an ulcer, and... to check at the random shot in the dark, celiac disease.

The first two came back negative and the last came back positive. Got a phone call that i needed to go gluten free, and so i did.

From there on was the race to see what was still bothering me (my side pain), but my "D" and vomiting went away. My GERD was still aweful, but that took nearly a year to get under control.

Needless to say, i've been poked and proded every way to sunday.

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Wow, my story is pretty much the same as yours. I don't have a celiac diagnosis (yet) because doctors keep telling me it is in my head, and don't believe me. My husband (and family) doesn't take it seriously either, he says that if gluten really made me sick I'd be dead or sicker than I am, but in reality I have felt horribly ill for 12 years and I've just gotten used to it, and used to pretending like I'm ok.

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Oh yes. Especially because I don't have serious symptoms and can have small portions of gluten without reacting.

Bloating? Gas? That's normal, you are just full.

Soft stools? It will pass, it's completely normal. <_<

My parents won't test me for Celiac Disease because it just seems like a mild to strong intolerance though I wonder what it would be like if I had ignored my symptoms and let the thing carry on until now. I'd be seriously screwed, because two months dealing with it without going gluten free led to me to five months of ups and downs and several other intolerances.

I really wonder what would happen if I wasn't so damn stubborn and didn't have tons of research material hanging around the house :lol:

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    • celiac disease is psychosomatic
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    • celiac disease is psychosomatic
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    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
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