Newly Diagnosed...and Angry!

[Echarais]

I want to start by saying that my first post to a forum is not usually so negative, but I am angry. I have suffered from Celiac Disease for nearly 30 YEARS! I must have seen 20 "specialists," had my thyroid removed, suffered miscarriage, damaged my heart, and spent tens of thousands of dollars on various blood tests, bone scans, MRI's, etc. How is it that a disease that is so common, is tested for so sparsely? Since about 2 years old I have had symptoms. I was constantly sick, weak, tiny. My family doctors actually wrote "hypochondriac" on my file! I was sick most of my childhood, but never had a fever, so they would throw me on an antibiotic (which I am now allergic to almost all of them), and boot me out the door. It seems like the focus was to appease my made up syptoms, and get me out of their hair while getting paid.

My symptoms:

Weight loss!

Hand cramping (neuropathy is what i was told it is called)

Fatigue

Eye pain/headaches

Bloating

Dry Skin

Tooth issues

Anemia (I have never been above an 8....since 5 years old!)

Calcium deficiency (it makes my hands go numb, and I have bouts of tachycardia often)

Sleep issues (usually inability to sleep)

An unsettled feeling (I pace my house, wring my hands, etc)

Shaking

Thyroid Disease

Arthritis/Psoriasis

It took my 4th endocrinologist to find the right diagnosis! I tested positive for all antibodies...really, really positive. I have essentially no blood calcium, and am severely anemic. I had seen many GI doctors, cardiologists, internists, rheumotologists. I guess my feelings are of relief from the diagnosis, that maybe now for the first time in my life I can feel normal, but I cannot get over the anger for being treated like a crazy person by doctors and family members.

Do people typically feel this angry about it? My mother has apologized to me, but I almost feel like I need my family doctor of 25 years to apologize too. Is that too much to ask?

I guess I am just sorting out all of my feelings about this, thank you for listening! How did others who went undiagnosed for so long cope with the past?

[cyberprof]

I think your anger is felt by a lot of us here. The losses that you mention are hard to get over.

I personally was undiagnosed for at least 30 years too (symptoms started at 17, diagnosed at 47) and I have some lasting health issues, but I feel so blessed that I was able to have two healthy kids - that would be hard to realize that celiac affected fertility/miscarriages.

My docs never said that I was a hypocondriac but may have thought it. I would talk about my symptoms and say, "Is all this bloating and weight gain a symptom of cancer, like ovarian cancer?" and they'd test and say no, you have an overactive imagination. "Lose weight" is what I heard - all my complaints were dismissed. They never tried to find the real reason or piece together my symptoms. This was four doctors over 20 years.

Perhaps if you educated your doctor (send him some medical journal articles about undiagnosed celiac) that might be a way to direct your anger into action and make you feel like you've done something important? It won't help you but may help someone else. Perhaps if your doctor learns, he may apologize but doubtful: Doctors are not wired that way (speaking as a daughter and sister of two docs).

Hang in there! I hope your symptoms resolve quickly. My anxiety is much better.

[mushroom]

You will find some interesting reading on the "Doctor" threads Your anger is completely understandable because these medical professionals have ruined your life to date, they have put labels of opprobium upon you, they have belittled you, told you you have no will power (to lose weight), given you inappropriate treatment, caused you permanent harm, and failed to consider what to members of this forum is 'the obvious' but to them is 'the oblivious'.

But the good news is that you now know what it is and there really is something you can do about it which does not involve drugs (well, certainly a few supplements though, to make up for all those deficiencies of 30 years ) Isn't it great to have a disease that does not require surgeries or medications, but just control of what one puts in one's mouth? And now you can be one of the ambassadors for celiac disease, spreading the word so that others do not have to suffer as you have done.

I am so glad you finally got your diagnosis and can begin the healing process. Here's to years of better living through eating healthy for your body.

[txplowgirl]

Hi Echarias, welcome to the group.

I definetly know where your coming from. I've been sick most of my life. Starting at about the age of 8. After being told, "it's all in my head", "You have depression", "you just need to get up and move more", as well as a lot of other things. I had 7 miscarriages in 5 years and an awful pregnancy, toxemia, you name it, son was born 2 months premie at 5 lbs and 6 1/2 oz.

Was finally dx'd at age 43 with Fibromyalgia and then 4 months later found out about celiac.

I can't really, trully say that I was angry, ticked off, yes, like to knock the head off a couple of dr's who thought I was faking. But never really angry at all. But let me tell you, I cried like i've never cried before from relief. I was begining to wonder if I was going out of my mind.

Anyway, now that you know what you have you will start to feel better, but because of how long you were sick it will take a while before you will really start to feel better. Also beaware of withdrawals, going gluten free, some will have withdrawal symptoms because for some it is like withdrawing from opiates. Seriously.

I suggest you read all the threads you can. Just know that by doing this your depression, fatigue, cramps, allergies, anxiety, stomach problems, and a lot of other problems you have will eventually all go away. But you have to give yourself time. It's not an overnight cure.

So, with all that said. Again welcome to the forum and feel free to ask all the questions you need to. That's what this forum is for. To, ask for help, to celebrate the good times and to vent when you can't hold it in because family members and friends don't understand. Because WE DO!

Vicky

[Roda]

Let me start off by saying I'm sorry you were treated like this and now here is to healing and a doctor that did finaly help you figure it out.

I can honestly say that yes I was angry, not at my diagnosis but at my doctor that dismissed me too. I didn't go undiagnosed as long as you, 2 1/2 years from onset of bad symptoms, but I was frustrated none the less at my doctor. I had two ER visists and at least a half dozen visits to him between Feb. 2006 and Dec. 2006. Any time I went he wanted to push pills on me automatically. When I refused proton pump inhibitors without any kind of testing, he relucantly(with much brow beating) ordered an UGI series. It showed prominant gastric folds, but was told it was insignificant. I never did take the PPI's. By the end of that year, I went back and told him something was off, but couldn't put my finger on it. That is when he asked me if I was depressed. I told him I wasn't, but if he couldn't help me find out what was wrong I probably would be. I just knew where he was going with that. He was thinking it was all in my head. He is also the kind of doctor that didn't liked challenged. I like to do reading and ask alot of questions. I was told I can't believe everything I read on the internet. DUH! When I told him I only reference sites that are reputable (gave him a few examples and he shut up). Well it did show up I was anemic and being female of childbearing age he said that was the reason. Because of the jerky doctors attitude I quit going to him all together. I started seeing an endocrinologist who I asked to order a test for celiac after I started doing some research and the rest is history. I still see this endocrinologist today, thank goodness she is open to suggestions and manages my thyroid well. It had been three years since I had seen my regular doctor so I thought it would be a good idea to have a follow up. Needless to say the appointment did not go well. I got angry and he was his normal self. After that day I swore to find another pcp. It took awhile but I found one. I had my initial visit to "interview" her and decided she was a good fit. I have not had to go back to her since. I have had some problems, but I have been seeing the GI for all of that. So to that I say I like the other posters advice by sending some articles and maybe help educating. My face to face encounter with my old doc didn't go so well. Welcome!

[Looking for answers]

Maybe it would be therapeutic for you and helpful for someone else in your shoes to write to all of your previous doctors and tell them what was recently discovered. It may open there eyes to Celiac Disease (they obviously don't have it on their radar) and give you a chance to tell your story and frustration of a severely flawed and unfair process.

Be sure to bookmark this site. You'll find this to be a new pseudo-family of some very loving and knowledgeable people.

[Echarais]

Thank you for the welcomes and responses. I am trying to keep the relief and hope as my main attitude, but was having an angry moment earlier.

As far as withdrawls...holy moly, it has been 3 days and I am feeling crazy. I feel way worse now that did before, but I understand the purpose and journey. My GI doc said it'll probably be 6 months before I feel any relief (he decided against a biopsy because my numbers and history were so bad, so it is a guess), but I am sticking to it!

Thank you all for making my anger not sound so crazy! Thank you all! I have been reading most of the day and am getting a ton of valuable information!

[Cypressmyst]

Yes. Be angry. The same doctor for 25 years and he just dismisses you? Be beyond angry. I'd start with a conversation with them. A conversation. Not an appointment. If anything he should be paying you for the information. After 25 years of mistreatment it is the least he can do.

The sending of articles is also a good way to go. Someone has to start educating these dolts, it can't help you but maybe you'll get through to one of them and it will save someone else the pain.

*hugs*

I've suffered for 22 years myself. 4 years of constant doctor's visits as a child with no relief. An $800 ultrasound on my swollen thyroid that netted the following response from the technician (my doc never could be bothered to call me) "Yup...that's swollen." No $@#! Shirlock! Did I mention I had no insurance and was a poor college student at the time, desperately trying to figure out why my thyroid was swollen. I didn't have money to piss away like that.

Educate yourself. See the bigger picture and help others realize what is at the heart of their ailments. That is the closest you and I can get to making any of this B.S "right."

[sb2178]

Oh, I hate the "you don't have a fever, you're not sick" line. As I have had precisely one fever in my adult life but been ill a number of times.

Thoughtful letters to previous providers seems like a very productive response. I'd write them to a couple of docs I saw about 5 years ago, but my blood tests were so very barely positive that it is unlikely that any testing would have given results prior to this spring.

You made it though. And, let me tell you, it is awesome to not be anemic. Really, really, able to carry multiple bags of heavy groceries up many flights of stairs awesome.

[T.H.]

That's exactly what I've been doing since diagnosis - I know it may not help, but I sincerely hope that if I either piss them off enough, or make them think enough, that perhaps the next person to come along won't have to cope with the crap that I did.

[T.H.]

Sympathy from this quarter too! I was 21 years undiagnosed, so not quite as long, but yea - hypochondriac, permanent damage, and tons of tests for other crap when all it would have taken was a celiac blood test and I could have avoided it all.

And you know what - your doc should apologize. Probably won't, but how 'bout, to start, a very nice long letter, expressing how much this has affected you, your mental and physical health, and how absolutely infuriating it is that it could have all been avoided if the doctor had actually listened to you that you were feeling ill, and kept looking for the problem, rather than dismissing your symptoms as 'in your head,' essentially.

For me, I let myself have a little anger over it and then I've tried to dump it, because I didn't want it to mess up the rest of my life, you know? Oddly, though, I think that letting go of the anger is actually EASIER for a lot of us once we go gluten free and start to heal, because suddenly, we are absorbing more of our nutrients...and that includes that ones that help regulate our emotions.

Weird, but true for lots of people I've met, although it takes a little while to heal up.

One thing I wanted to make sure and mention, since you are newly diagnosed, is to beware the gluten free label. It doesn't actually mean gluten free at all - it's a legal term that each country chooses the definition for. In the USA, there IS no definition yet, although most companies try for 20ppm of gluten or less. But some have more, so can still make you sick. Sometimes it's a bit trial and error-ish. And if you eat tons of the gluten-free foods, like crackers and such, it's just like low cal food that can make you fat if you eat enough. Lots of gluten-free food can make you sick if you eat enough.

Most people do okay if they stick to the 20ppm or less diet, but for a few of us, we can't even eat the 20ppm or less foods. My daughter was still not feeling well after going gluten free and we searched for food allergies and all sorts of things before realizing that she is much more sensitive to gluten than the average. She can only tolerate 10ppm of gluten or less to be healthy. I seem to tolerate less than 5ppm of gluten. This level of sensitivity is not usual, but if you are on the diet and not improving, you may want to cut back on the grains (most gluten-free grains are contaminated to some extent), peel your fruits and veggies (sprays and mulches often have gluten CC), and get whole meats not from the deli and see if that helps a bit.

As I said, that's pretty rare, but I mention this because if you AREN'T healing on the regular gluten-free diet, well...there are good odds that you'll get about as much help from the doctors as you got about the celiac disease in the first place. Even if you test yourself very precisely and can repeat your reactions, a lot of doctors will react to this news the same way they did to being told our symptoms before we were diagnosed: as though we're hypochondriacs.

I figure you'd rather not have to put up with that crap, if it comes up. So now, you can already have something in the back of your mind that you could do, ya know?

Best of luck to you - there's a lot of great people in the community who have a lot of really good advice and information. I tend to rely on them more here than I do on my doctors, at this point!

[Judy3]

My goodness it seems as though we all have been through the same feelings of being dismissed by doctors. I can't believe it took this long to diagnose me too. I've been made to feel like a hypochondriac since I was a teenager. I had a needless hysterectomy two years ago because I was doubled over with cramps that felt like labor, after - still had the cramps, I had my gall bladder removed last year because the pain was so bad and after an endoscope and colonoscopy and a HIDA scan the gastro doc thought it should come out, after- still had the pain and cramps, Spring of 2010 sent me to a gyno-urologist and after many expensive physical therapy sessions that didn't work and made the cramps worse and a cystoscopy he says I'm having bladder and rectal spasms. Gives me a pill that I can only take for a few months 'to reset the nerves in my pelvis' after - cramps and stomach pain now get worse. I go back to my primary doctor in Sept and we discuss my stomach issues have now gone to vomiting and diarrhea after every meal and he says take more Prilosec. 2 weeks later I make a call to the office and tell him there is now blood in the toilet should I take more Prilosec or can we check this out? He sends me for a CT Scan and it's normal, he sends me back to the same Gastro doctor I saw last year and he's po'd because he was wrong last year about the gall bladder so you can imagine how nice he's been. More tests, stomach emptying study he says is normal, until I tell him the radioactive eggs they fed me were in the toilet just as I swallowed them the next morning. He finally pays attention to what I'm saying and does another endoscope and colonoscopy and discovers that my insides are like raw meat they are so inflammed. He takes biopsies and then a week later requests my presence for more blood tests. I am about to market myself as a lawn sprinkler by this time but it was worth it, the first tests were negative but the genetic tests, along with my symptoms was enough for him to suggest the gluten free diet. I've had a lot of success in just a week on it. (still in pain after eating but nausea and vomiting and diarrhea with blood are gone) I also have to say thank God for the Nurse Practitioner in the gastro's office. He has been my savior through all of this. Finally someone that understands!! Another good note, since I've been on the gluten free diet my blood sugars have been in the normal range and I'm eating carbs. go figure huh? I have multiple food allergies, diabetes (hmmm?) and now celiac. The NP says they are all autoimmune diseases or issues and could all be related. I'm 53 years old and I've been sick for most of my life and thought I was nuts! I said to the NP am I nuts or crazy and he said absolutely not.. you have Celiac and it's a shame that you've been shrugged off for all these years. I love this guy!

So that's my long winded story sorry! If one person on this planet can be taken seriously by a doctor because of what we've gone through then it will be a win for us all.. godspeed to you all and I hope you are enjoying your life every day! I've never been so happy to be diagnosed with a disease.. at least so far this one seems to be manageable..

Later

[rustycat]

Wow, I can really relate to the comments on this thread. I think the hardest issue were so-called friends who called me "lazy" or "boring" because, yet again, I did not feel well after eating and was not up for various activities.

My biggest loss were the miscarriages and infertility. We did adopt two kids. Life probably would have been easier with kids who didn't have the issues these ones have (they were both adopted as pre-schoolers), but I love them a lot and all the work has been so worth it.

I guess many of us have a lot of grieving to do for the things that were lost. The benefit in my case is that I still have a lot of years to go and, with what I know now, the future looks bright.

[cahill]

For me, I let myself have a little anger over it and then I've tried to dump it, because I didn't want it to mess up the rest of my life, you know? Oddly, though, I think that letting go of the anger is actually EASIER for a lot of us once we go gluten free and start to heal, because suddenly, we are absorbing more of our nutrients...and that includes that ones that help regulate our emotions.

Weird, but true for lots of people I've met, although it takes a little while to heal up.

I so agree with this.

I was fortunate to even receive my diagnose. My youngest daughters symptoms were mostly neurological.After three years of tests,including a spinal tap for MS, many MRI's ,many Cat-scans and misdiagnoses ,,my daughter INSISTED her doctor send her to a specialist. Personally, I think he sent her just to shut her up and get her out of his office.

She was tested for celiacs and diagnosed.Her sister and I were then tested and diagnosed.

I just turned 54 and the earliest symptoms of celiacs I remember was when I was about 10 or 11.

That is over 40 years of misdiagnosis,inappropriate treatments,unnecessary surgerys and years and years of being call everything from a hypochondriac to mentally ill.

I was very angry! And to be honest there are times it still gets to me,,but now i am "mostly" accepting and grateful.

Grateful because when 2 of my grandchildren started showing signs of celiacs, their mother and I knew what to do .Grateful because they will NOT suffer as I did. They WILL have the understanding and support of people and doctors who understand.

I truly believe as my gut is healing, the anger from past wounds physical,emotional and mental are also healing.

[sandsurfgirl]

I'm 11 months gluten free and still processing the anger. I had celiac for 40 long years, got diagnosed a few weeks after my 40th birthday. Just honor it, journal it, feel it and then move past it. It's okay to be angry. We all are!

[SaraKat]

It took me a year to get diagnosed after having weird symptoms and I thought that was long. I don't know why they don't test everyone for celiac- or at least people that have come back a couple times with no diagnosis.

[planecrazy]

My 3 yr. old grandson has just been diagnosed. He has suffered with horrible eczema since he was off breast milk. Since he was diagnosed & gluten free his skin has improved greatly.

The fun begins with finding products for him as he is allergic to egg yolk & white as well as milk. He has been on soya milk the last 2 yrs & it turns out he is allergic to that.

Does anyone have any bread machine recipes or tips on making the gluten free, milk & egg free bread?

[Skylark]

I missed this thread. Heck yes, I'm angry. I was tested for celiac as an infant but I had already been taken off wheat because it made me colicy. Because that test was negative, I was diagnosed with wheat allergy and encouraged to adopt a normal diet in my teens. (Childhood wheat allergy often goes away.) I went through my 20s exhausted after a bad bout of flu, got treated with Prozac, and became bipolar from the Prozac. Rounds of meds, chronic diarrhea, IBS, gastritis, I finally went on an elimination diet out of desperation and discovered that gluten was causing all the trouble. I can't count the number of doctors that missed that diagnosis.

[Loey]

I want to start by saying that my first post to a forum is not usually so negative, but I am angry. I have suffered from Celiac Disease for nearly 30 YEARS! I must have seen 20 "specialists," had my thyroid removed, suffered miscarriage, damaged my heart, and spent tens of thousands of dollars on various blood tests, bone scans, MRI's, etc. How is it that a disease that is so common, is tested for so sparsely? Since about 2 years old I have had symptoms. I was constantly sick, weak, tiny. My family doctors actually wrote "hypochondriac" on my file! I was sick most of my childhood, but never had a fever, so they would throw me on an antibiotic (which I am now allergic to almost all of them), and boot me out the door. It seems like the focus was to appease my made up syptoms, and get me out of their hair while getting paid.

My symptoms:

Weight loss!

Hand cramping (neuropathy is what i was told it is called)

Fatigue

Eye pain/headaches

Bloating

Dry Skin

Tooth issues

Anemia (I have never been above an 8....since 5 years old!)

Calcium deficiency (it makes my hands go numb, and I have bouts of tachycardia often)

Sleep issues (usually inability to sleep)

An unsettled feeling (I pace my house, wring my hands, etc)

Shaking

Thyroid Disease

Arthritis/Psoriasis

It took my 4th endocrinologist to find the right diagnosis! I tested positive for all antibodies...really, really positive. I have essentially no blood calcium, and am severely anemic. I had seen many GI doctors, cardiologists, internists, rheumotologists. I guess my feelings are of relief from the diagnosis, that maybe now for the first time in my life I can feel normal, but I cannot get over the anger for being treated like a crazy person by doctors and family members.

Do people typically feel this angry about it? My mother has apologized to me, but I almost feel like I need my family doctor of 25 years to apologize too. Is that too much to ask?

I guess I am just sorting out all of my feelings about this, thank you for listening! How did others who went undiagnosed for so long cope with the past?

I think it is common to feel a combination of anger at the doctors and family members that didn't believe us and relief at the diagnosis. I was diagnosed in June and the GI I saw was shocked that i had gone decades without it being diagnosed. I moved to a new town/state literally the day after all of my tests had come back and my old GI wanted me to get a capsule endoscopy as soon a I found a new one. Well he didn't think I needed it. He treated me like it was all in my head and "I must be eating food with gluten in it." I finally put my foot down, had the test and lo and behold in addition to the Celiac I have an ulcer. He did a 360 in his attitude and demeanor but I don't feel that I deserved to be treated the way he treated me before the test. My old GI was wonderful.

The bottom line is we all have to be proactive. In so many cases our voices are not head. Just know that we are all here for you and this forum is composed of the most compassionate, wise and giving people all gathered in one place. It might suck that we have this disease but thank God we have this forum and each other!!!

Loey

[Loey]

Sympathy from this quarter too! I was 21 years undiagnosed, so not quite as long, but yea - hypochondriac, permanent damage, and tons of tests for other crap when all it would have taken was a celiac blood test and I could have avoided it all.

And you know what - your doc should apologize. Probably won't, but how 'bout, to start, a very nice long letter, expressing how much this has affected you, your mental and physical health, and how absolutely infuriating it is that it could have all been avoided if the doctor had actually listened to you that you were feeling ill, and kept looking for the problem, rather than dismissing your symptoms as 'in your head,' essentially.

For me, I let myself have a little anger over it and then I've tried to dump it, because I didn't want it to mess up the rest of my life, you know? Oddly, though, I think that letting go of the anger is actually EASIER for a lot of us once we go gluten free and start to heal, because suddenly, we are absorbing more of our nutrients...and that includes that ones that help regulate our emotions.

Weird, but true for lots of people I've met, although it takes a little while to heal up.

One thing I wanted to make sure and mention, since you are newly diagnosed, is to beware the gluten free label. It doesn't actually mean gluten free at all - it's a legal term that each country chooses the definition for. In the USA, there IS no definition yet, although most companies try for 20ppm of gluten or less. But some have more, so can still make you sick. Sometimes it's a bit trial and error-ish. And if you eat tons of the gluten-free foods, like crackers and such, it's just like low cal food that can make you fat if you eat enough. Lots of gluten-free food can make you sick if you eat enough.

Most people do okay if they stick to the 20ppm or less diet, but for a few of us, we can't even eat the 20ppm or less foods. My daughter was still not feeling well after going gluten free and we searched for food allergies and all sorts of things before realizing that she is much more sensitive to gluten than the average. She can only tolerate 10ppm of gluten or less to be healthy. I seem to tolerate less than 5ppm of gluten. This level of sensitivity is not usual, but if you are on the diet and not improving, you may want to cut back on the grains (most gluten-free grains are contaminated to some extent), peel your fruits and veggies (sprays and mulches often have gluten CC), and get whole meats not from the deli and see if that helps a bit.

As I said, that's pretty rare, but I mention this because if you AREN'T healing on the regular gluten-free diet, well...there are good odds that you'll get about as much help from the doctors as you got about the celiac disease in the first place. Even if you test yourself very precisely and can repeat your reactions, a lot of doctors will react to this news the same way they did to being told our symptoms before we were diagnosed: as though we're hypochondriacs.

I figure you'd rather not have to put up with that crap, if it comes up. So now, you can already have something in the back of your mind that you could do, ya know?

Best of luck to you - there's a lot of great people in the community who have a lot of really good advice and information. I tend to rely on them more here than I do on my doctors, at this point!

I have to agree with (and applaud) Shauna for pointing out the problem with products that say they are gluten free. Part of my problem is that I am so sensitive right now that I can't eat most of the foods that are labeled gluten-free. We do need the FDA to finally back us and make sure the labels are accurate. But we will spend the rest of our lives reading labels. I am limited to eating rice, vegetables and eggs right now and slowly reentering foods one at a time. It will take time for your body to heal and as it does you'll regain the pat of your life that you lost. In the meantime, we are all here for you!

Loey

P.S. Welcome to the forum

[Loey]

My 3 yr. old grandson has just been diagnosed. He has suffered with horrible eczema since he was off breast milk. Since he was diagnosed & gluten free his skin has improved greatly.

The fun begins with finding products for him as he is allergic to egg yolk & white as well as milk. He has been on soya milk the last 2 yrs & it turns out he is allergic to that.

Does anyone have any bread machine recipes or tips on making the gluten free, milk & egg free bread?

Here are some links to recipes. You may have to scroll past other recipes. Hope they help. I have not tried them but did a search for you.

Loey

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[FooGirlsMom]

Hi,

I'm one of those people, like you, and so many others, who went undiagnosed. I had to diagnose myself. My docs thought I was "stressed" and a pile of other things. Some were kind and shook their head in distress and others looked at me like - if you'd just lose weight you wouldn't have these problems.

I'm a big believer that no matter how many letters of degree you have after your name, it doesn't make you god-like. Medical school, and medical journals, are just not educating these doctors about Celiac and gluten-intolerance.

I think it would be the greatest thing EVER for you to write a letter ( a form letter would save you time) and enclose the proof of your celiac diagnosis. Be positive about it all and say how excited you are that after all these years of suffering and remaining undiagnosed and misunderstood, that you finally have a real diagnosis for your suffering. Doctors cannot dismiss test results. They go on those. They are concrete & tangible. In doing this, you will be helping who knows how many patients...seeing these same doctors...and you might save them years of suffering because you took the time to kindly educate the people who can save their lives.

Please write to your doctors. I wish someone had. I saw at least a dozen who never got it and then I gave up because while I didn't know what I had, I found a way to control the symptoms through low carbing.

FooGirlsMom

[cyberprof]

Hi,

I'm one of those people, like you, and so many others, who went undiagnosed. I had to diagnose myself. My docs thought I was "stressed" and a pile of other things. Some were kind and shook their head in distress and others looked at me like - if you'd just lose weight you wouldn't have these problems.

FooGirlsMom

As I said above, I also got the "if only you'd lose weight..." comment. I wonder how many male patients would get the same treatment from their docs? A woman posted on a NYTimes blog writing about not being properly diagnosed (not celiac), being made to feel like a hypocondriac said "Never tell a doctor that you have depression or anxiety or stress because if you're a woman, *every *single *other *problem* will be chocked up to "mental issues." And I had thought that "female hysteria" was a diagnosis in the distant past but...not true!