Why Go Through Endoscopy?

[radman]

Let me preface this by saying that I am a physician in a specialty unrelated to gastroenterology. I have recently "self diagnosed" celiac disease.

I believe I have a relatively mild form. I have had loose, gassy bowels off and on throughout my life, but the symptoms have recently become worse. They have never been severe, I have never had pain, profuse diarrhea, significant weight loss, etc. But lets just say, it was always clear that my bathroom trips would be considered "offensive" to others (and me). In addition, I have had problems with borborygmi (noisy, roiling, growling stomach, primarily at night). These symptoms of "enteritis" and low grade malapsorption never seemed to fit any clear diagnosis. I remember wondering if it could be celiac while I was in med school, but the description by the professors seemed more severe than what I experienced.

Anyway, as the symptoms worsened recently I decided to try a gluten free diet. I have always been a bread, sandwhich and pasta lover, so rarely a day went by without gluten exposure (I'm 42).

I have been gluten free for about 2 weeks, and wow! I have never had such normal, regular, bowels. No offensive odor, no gas, no sign of malapsorption. There is no question that avoiding gluten has dramatically changed my digestive system. Having never had this normalcy in the past, I am astonished that such a simple change in diet could make such a difference.

So now the question is: Why go in for serum antibody tests, endoscopy, and biopsy?

I am completely well for the first time in my life, and the diagnosis seems clear. There is no treatment at this time other than diet, so what is the reason to pursue things further? Thoughts?

[WGibs]

My only thought is that I wish more doctors thought like you!

I had chronic diarrhea, with gas and gas pains, as well as intermittent itchy rash. All of this goes away if I avoid gluten -- I don't remember when I last felt so good. But if you ask my doctor, she will tell you that my blood tests don't indicate celiac, so I should continue to eat gluten and take Imodium for my digestive problems. I determined that she was completely nuts, so I did what I knew to be the smart thing (embrace the gluten-free diet) and I haven't ever been back to see her.

I'm glad you found the cause of your problems and that you are sensible enough to pursue the obvious solution! Please tell your pals, if any of them are GIs or GPs.

[Guest nini]

my personal opinion (and I'm just a person with Celiac and a mom of a Celiac child) is that the positive dietary response is THE BEST diagnostic tool. The blood tests and the biopsies can only rule them in, there is too much room for error in sampling, reading the results, interpreting the results, results being skewed by people not being able to even eat anything, on and on...

I was diagnosed by highly positive blood tests along with positive dietary response. My daughter was diagnosed by positive dietary response alone.

I don't know why the GI community is so stuck on the outdated methodology of the biopsy as the "gold standard" when the biopsy ONLY shows the most extreme forms of damage, the final stages of the disease. It does NOT allow for the inflammation or scalloping that is seen in the early stages of the disease.

I think that we need to act like partners with our Dr.s instead of treating them all like omnipotent beings. I am thrilled that some Dr.s are finally starting to recognize positive dietary response as a valid diagnostic tool, and I think within the next six months to a year, you will hear more from the Medical Community about positive dietary response as a valid tool. I love my new PCP, she told me with my daughter that we know it's celiac because of the way she responded to the diet and the way that she reacts when exposed to it, why on earth would any Dr. want her to reintroduce gluten (poison) into her body now for the purpose of testing for a positive diagnosis?

long answer to a short question... biopsy and blood tests not needed to confirm, positive dietary response very valid!

I meant to add that my daughter's GI said that her blood tests were negative (he did NOT do the complete Celiac panel despite my request because of MY recent dx) and he also said that she "just had IBS" and to "feed her more whole wheat"!!!!! WTH???? I'm sorry? You want me to feed my child something that causes her immense pain? Causes her to break out in hives (inside and out) and changes her behavior to that of a monster? No thank you. If my child gets ahold of anything with even a tiny amt. of gluten she has a severe and immediate reaction.

[Guest Robbin]

Yes! I am so glad for you. I know what the "wow" bathroom moment is like when you suddenly realize what "normal" is! PLEASE--Help save others from- being labeled as hypochondriacs, put through invasive tests, damaged health, damaged relationships, and lost years--spread the word on this!! Take care & glad you are one of the "good guys".

[nettiebeads]

You're for real, right? Not just joshing with us? If you are for real, then you are a breath of fresh air to a lot of people here. If you remember, celiac has about 200 symptoms, and people can be asymptomatic as well. And as with most autoimmune disorders, the severity and course of the disease can vary widely from one person to another. I think the biggest give away on the disease is the stenorrhea (I probably didn't spell that right, but you probably know what I mean) Loose, pale frothy floating STINKY bms are not normal, but very indicative of celiac.

Anyhow, my former gp (retired) dx'd me through diet alone. I had had a really bad sinus infection, was treated with keflex, developed D. At first I thought it was just a reaction to the antibiotic, but when the D lasted for 6 weeks and was as I described it earlier, I went to my gp, he took me off of gluten. Voila! no D, ergo, celiac. By the way, my gp went to school at UMKC. Makes me wonder if the school and intructors have anything to do with the recognition of celiac by the practicing medical community. So I've never had one single test done, other than the diet challenge. My current gp who knew my former gp (small town) agrees with his assessment and sees no advantage in "confirming" the dx. I know how my body reacts to gluten and that's fine with him.

Welcome to the board and life without gluten. It can be done. At first it seems overwhelming, but after awhile it will be second nature.

Annette

[DonnaD]

Welcome Radman,

Might I ask what your field is? I'm also a Mum of a celiac child and am gluten intolerant myself. I too wish there were more doctors like you! So here is my (rather long) view of the testing question.

In the UK the system is that as a biopsy proven celiac, gluten free staples are available on prescription. Also it is impossible to get tested for associated conditions/complications such as thyroid, bone loss, gastric issues,allergies etc. unless a) your doctor has a high degree of clinical suspision or you get private health insurance (v expensive) c) pay for everything yourself (expensive and difficult to find labs without a doctors referal). If none of these factors affect you and you are are the sort of person who can live without an official' diagnosis without occasionally cheating or doubting yoursself then no, no point in further testing at all, especially as you would need to go back onto gluten for months and be very ill again for the standard tests to be positive, they are so often false negative when we have been partially gluten-free for even a short while. The Enterolab tests are not really mainstream but it's that or nothing for a lot of us!

There are many reasons why I got tested, even though I was 99% sure gluten was my problem.

As a physician when you are in a social situation and politly ask for gluten free food and explain exactly what that means your family/friends will not even question your diagnosis or why gluten is poison for you. They will respect your self diagnosis.

You will not have to suffer years and years of declining health, in my case IBS at 16 and downhill for the next 20 years collecting diagnosis, fibromyalgia, chronic pain syndrome, gastritis, brain fog, chronic fatigue and have to 'retire' at 42 as I did.

You will not get 'accidentally poisoned' by family and friends, or made to feel ungrateful when you refuse to eat pasta, even though you have told them 100 times you can't eat it.

You will not be treated like a hypocondriac If you take a a printout from the Internet clearly listing your major symptoms, about 30 or so in my case, and politly ask for celiac testing because having previously done ATKINS (no carbs) you felt MARVELOUS and your IBS cleared up and now you realise with the benefit of hindsight,why .your doctor will not suggest a gluten challenge for 3 months (or say 3 weeks and nothing show on bloods/biopsy), and treat your refusal to poison yourself as proof that you imagining it.

You will not be kindly told that the list of 30 or so symptoms is just clinical depression, you are overweight and don't have celiac because they are all very thin, and given more Prozac. Of course there isn't a link between fibro, brain fog and gluten ha ha, what crack pot web site did you see that on? the Lancet on line or BMJ, well you must not have understood the study, you are not a doctor after all! Stick to being an Accountant, oh sorry I forgot you are on benefit now.

You will not be told there is no such thing as gluten intolerance, its just something made up by the media.

You will not have to pay thousands of pounds of your own money for extensive testing/treatment of associated conditions over several years and have a medical file 12" thick but only' waste basket' diagnosis of exclusion like IBS and Fibromyalgia.

You will not be upset that chronically ill members of your family have spent their entire lives and some died because of never being correctly diagnosed. Or that they refuse your help to arrange testing and stay sick and in denial.

You will not have to spend years reading medical research data and have an entire bookself of books on anything from Candida to Back pain going back decades and getting more and more technical! Amazon won't go bust if you get diagnosed!

You will not have to watch your child's health decline dispite pointing out to her Doctor that she clearly has food intolerances and should not be off the bottom of the weight/height centile chart.

You won't feel vindicated 10 years later when a biopsy proven celiac diagnosis is given to your child.

You won't have to sheer joy of having to buy a whole new larger wardrobe for rapidly growing child with colour in her cheeks who no longer goes everywhere with a large bottle of gaviscon, motilium and mups losec tablets. her chronic mouth ulcers have gone and her lips are no longer sore and cracked. She has got a visual problem and dyslexia and there is research linking these to un-diagnosed celiac, i'm currently researching that and have got her on a university research project.

You won't have an I TOLD YOU SO speach rehearsed for your own doctor/family/school/everyone who ever doubted that you were actually ill or questioned the state of your mental health after seeing your extensive medical book collection (before your partner asked you to hide it because his parents were visiting)

And finally you won't have a terrible working memory and terrible spelling due to the toxic effect of gluten in the brain!

When I found this forum after my daughters dx I spent an entire week reading it. I was in total shock. So many here shared almost identical medical histories to mine that I knew I finally had the answer to my own problems. I am even considering going back to school to study in this area.

My apologies for the long rant but it isn't often we get a member of the enemy camp change sides!

[wolfie]

I did not go through the endoscopy. My PCP ran bloodwork at the request of my nutritionist and found elevated IgG levels (unfortunately she did not run a full Celiac panel, so I didn't have the other numbers to go off of). She told me to go gluten-free, so I did. I then saw a gastro who wanted to do the endoscopy, but I had to go back to eating gluten for a period of time to do it AND, like others have said here, it can only rule in Celiac, not rule it out. No way was I doing that. My dietary response has been amazing.......there is no question in my mind that I have an issue with gluten....be it Celiac or gluten intolerance....I will not be eating it again.

They only regret I have is that my kids Ped is reluctant to test them unless I have a "firm" diagnosis via biopsy. I don't see the harm in doing bloodwork on them (the panel and/or gene tests) and am going to request that he does this once we get back from Spring Break. If he won't, I may be resort to using Enterolab and finding a new Ped, too.

Glad that you are feeling better.....amazing, huh?

[VydorScope]

So now the question is: Why go in for serum antibody tests, endoscopy, and biopsy?

I am completely well for the first time in my life, and the diagnosis seems clear. There is no treatment at this time other than diet, so what is the reason to pursue things further? Thoughts?

First off, thank you for your work as a doctor. Dr's get a bad shake down here, many have had so many bad experences that form can get down right hostile to dr's, I hope you understand the pain some have gone through here. I certinaly have great doc's and am happy with my care.

Second, there are only TWO reasons, IMO for the tests once you have a postive diet response is to rule out OTHER issues. However, you should know that if you do the tests, you can not be gluten free durring them. Here is a article on that:

https://www.celiac.com/st_prod.html?p_prodi...-58106610144.60

The second reason is insurance. If you want any care (shuch as vitman screenings, ostoprosis scans, etc) that would be related, many ins companys will NOT cover them with out an offical dx.

[jerseyangel]

Welcome to the board! I am really glad that you found the source of your symptoms. If more GP's and GI's took your sensible approach, just think how that would benefit the people who have been suffering for years with many of the Celiac symptoms--but no one to 'connect the dots'. My story is that I began having nausea and dizziness in 1984--shortly after the C-section birth of my son. For the next 20 years, I was misdiagnosed with sinus infections (with no nasal symptoms!) and given numerous antibiotics (I am now allergic to all but one) and steroids--tablets and injections od Decadron. I was all the while having muscle aches, fatigue, digestive upsets--no one tested me for anemia at the time. Fast forward to 2004--after an Endometrial Ablation to "correct my anemia"--my stmptoms worsen dramaticly. I have urgent, explosive D, tingling and numbness in my face, arm and legs, nausea, bruises all over my arms, fatigue. By this time, fed up with never getting well--despite seeing a number of doctors, I began to explore alternative medicine. I tried Accupuncture. Another practioner (a Kinesiologist) told me to not eat, among other things, wheat, oats, barley or rye. That was the first time in my life anyone had linked my "illnesses" to foods. I tried his "diet" and felt better. I gradually slipped back to my normal eating habits, and the symptoms returned. When I went to the GI that ultimately diagnosed me, I was 'armed" with information--my positive response and a lot of information I had obtained by doing my own research. I would say that I was finally, after over 20 years, diagnosed with Celiac by Eastern, Western and Alternative medicines--and only because I took charge and dug up and put together the information. Shouldn't that have been the job of my doctor--and a long time ago? Thank you for sharing your experience with us--I hope you have taken some time to read through the board. Please, help us spread the word about Celiac

[ravenwoodglass]

You will not have to watch your child's health decline dispite pointing out to her Doctor that she clearly has food intolerances and should not be off the bottom of the weight/height centile chart.

You won't feel vindicated 10 years later when a biopsy proven celiac diagnosis is given to your child.

You won't have to sheer joy of having to buy a whole new larger wardrobe for rapidly growing child with colour in her cheeks who no longer goes everywhere with a large bottle of gaviscon, motilium and mups losec tablets. her chronic mouth ulcers have gone and her lips are no longer sore and cracked. She has got a visual problem and dyslexia and there is research linking these to un-diagnosed celiac, i'm currently researching that and have got her on a university research project.

Oh how I wish I could have shared that joy. Celiac wasn't considered in my family until I was sick for over 15 years. If diagnosed when I was first ill, instead of being told 'everything was in my head', maybe they would not have labeled my children as depressives, maybe my DD would not have permanent scars from cutting, a direct result of antidepressants, and maybe my DS would have been diagnosed before his growth was stunted at less than 5'. Yes doctor I hope you spread the word. I'm glad you were able to figure this out for you, now how about testing everyone who comes through the door of your practice?

[Nancym]

Well, I often felt the same way! If diet does the trick, that seems like a pretty clear diagnosis. I wonder how much of the diagnosis of IBS is actually a food intolerance? I diagnosed myself with diet, within 2 days I was like you, my GI tract was well behaved and quiet. But I decided to have followup testing done at Enterolab.com simply because I was curious about it and thought my family should know if we've got the genes. It also revealed I was sensitive to casein as well, in fact, a month or so after giving up gluten my symptoms had come back and giving up casein (dairy) was enough to calm things down again.

But my 47 years of exposure to gluten left me with a lot of autoimmune diseases like Graves and Anklosing Spondylitis. So I really wish that we had better screening tests for gluten sensitivity because if mine had been caught earlier, I might not have needed to suffer with these.

Oh, there's also a lot of gluten sensitivity research being done where patients have brain lesions and neurological symptoms and no GI symptoms at all. The likelyhood of them getting diagnosed is terribly slim.

Here's an interesting Open Original Shared Link on gluten sensitivity.

I do have to say though, there are so many people that seem to require an official diagnosis from a doctor before they're willing to adopt a gluten free diet. Its a little torturous to listen to the stories of how sick people get and yet they get back negative results to a biopsy and their doctors say their is nothing wrong. Even worse when it is happening to a kid. I'm sure the number of false negatives is just huge. Wouldn't it be better to just jump on the dietary changes and not wait for a positive biopsy? I just have this feeling that this is the ONE disease that many patients can diagnose and treat themselves.

[mmaccartney]

I had the serology done, why not it was covered by insurance and was only a blood draw. My mistake was starting the gluten-free diet first, and only my IGA was positive.

I also had the endoscopy, but in my case it showed nothing. BUT, did they sample the correct location? Did the laboratory analyze the sample properly? etc etc etc. I think they still have my biopsy on hand, perhaps I should have a second opinion.

So, for me the testing was for naught. The serolgy pointed me in the direction of celiac, the endoscopy did not help at all, but when I stopped eating gluten, I stopped dying. I did try to eat a "gluten" waffle about 1 week after going gluten-free, just to see. What a train wreck that day was!!!

I talked to my rehumotologist (whose mother has Celiac), discussing how my testing was funny, but dietary results were astounding, and I mentioned to her that it would be nice to have more definitive test results. She told me the best advice I can give anyone. Why have more testing done?? What more will that tell you? You had some "funny" bloodwork, and you responded to the diet. Why put yourself through more testing? You know what is wrong with you, now go get better.

Since then I've remained gluten-free. My appointments with my Gastro and Rhumy are now down to once every six months, instead of ONCE PER WEEK!!! with trips to the ER in between!!!!!!!!!!

Get better, glad to have a DR on board!!!! P

[gabby]

I'll go against the grain here and say that if you have access to the testing, go ahead and get it done. It can rule out other problems that may be going on. Even if the testing comes up inconclusive or not very helpful in the celiac department, the testing will give you a nice set of baseline numbers that might come in handy down the road.

[Nantzie]

Yep, many, many, many, many... Okay, MOST of us here have been told either by family, friends or doctors, at some point or another that we were hypochondriacs. I was told that I was making it up the chronic pain I was in to get sympathy and get people to do things for me. This was after about two years of being in so much pain that I couldn't properly take care of my newborn and toddler, but my family wouldn't evne come over to help me at all, ever, because they thought I was faking it; that I was just lazy and manipulative. This was right after I found out about celiac on the internet and was waiting for a doctors appt to get the blood work done. They said that I should be really careful about what I told the doctor I found out because I might be labeled a hypochondriac. So what??? To me, it's the same as someone who doesn't know the symptoms of diabetes coming across it on the internet or in a news article, and putting two and two together for the first time. So I did what most people do, made an appt with my doctor. What's so paranoid about that?

And if I remember right, a lot of people who are diagnosed as being hypochondriacs complain of abdominal and digestive issues. I know that there are some people who have hypochondria who fall into a different, more psychological definition of hypochondria, but I really feel that a good portion of those people who have been labeled with hypochondria due to abdominal and digestive issues may be undiagnosed celiacs.

I hope you stick around and read the archives a little. You'll find that once a person figures out the diet and getting rid of hidden gluten, most of the time we're just talking about food, and who has found a gluten-free version of something. Finding out about celiac and going gluten free, as you are happily aware of, is usually one of the best things that ever happened to a lot of us. Eating gluten-free is easy once you know what you're doing. There are the occasional bad days where you feel sad about it, but not too often.

The hardest part of being celiac is dealing with other people who are either uninformed or misinformed, or just plain cruel. The rolling eyes, the Spanish inquisition at every family event, the snarky comments, etc.

The sad thing for me is that just about everyone in my life who is like this, especially the really mean ringleaders of the Nancy-bashing conglomerate, have symptoms of celiac. No idea if they have it because I haven't brought it up more than a couple times in passing. Just mentioning to people who expressed interest and happiness in my improved health what symptoms of mine went away after going gluten-free.

I hope we see you around the boards. I'm glad you're feeling better.

Nancy

[radman]

Well thank you everyone for your thoughtful replies.

I was a bit taken aback by some of the MD bashing, but I'm sure it is deserved in many cases. Doc's after all are just people with faults like any other. Many have undeservedly high opinions of themselves which probably gets in the way of helping their patients. Know that we are certainly not all that way. In fact, I think that the smarter ones know how limited medical knowledge really is. I for one graduated first in my medical school class with a long list of honors, but I would be the first to say that there is a tremendous amount we don't have a clue about. On the other hand, the "alternative providers" are overpopulated by charlatans with little basis for what they do. They're often "yes men", and they're loved because they tell folks what they want to hear. Kind of the opposite of what many lousy MD's do, where they don't listen to their patients and display a "superior" attitude. There is an easy and lucrative market for those who want to take advantage of the problems with traditional medical care. Something in between may be what we all would be best off with.

There certainly is a lack of understanding about this disease, it's frequency, and various manifestations. I am quite sure that there are thousands of patients labeled IBS, or worse psychosomatic, that actually have celiac.

Hopefully this is beginning to change. I for one will do my small part in changing perceptions in the medical community.

[CMCM]

Well thank you everyone for your thoughtful replies.

I was a bit taken aback by some of the MD bashing, but I'm sure it is deserved in many cases. Doc's after all are just people with faults like any other. Many have undeservedly high opinions of themselves which probably gets in the way of helping their patients. Know that we are certainly not all that way. In fact, I think that the smarter ones know how limited medical knowledge really is. I for one graduated first in my medical school class with a long list of honors, but I would be the first to say that there is a tremendous amount we don't have a clue about. On the other hand, the "alternative providers" are overpopulated by charlatans with little basis for what they do. They're often "yes men", and they're loved because they tell folks what they want to hear. Kind of the opposite of what many lousy MD's do, where they don't listen to their patients and display a "superior" attitude. There is an easy and lucrative market for those who want to take advantage of the problems with traditional medical care. Something in between may be what we all would be best off with.

There certainly is a lack of understanding about this disease, it's frequency, and various manifestations. I am quite sure that there are thousands of patients labeled IBS, or worse psychosomatic, that actually have celiac.

Hopefully this is beginning to change. I for one will do my small part in changing perceptions in the medical community.

I think what is upsetting is that there is now a fair amount of information out there about celiac disease, but doctors (when confronted with the possibility) don't put much effort into learning about it. If I, as a doctor, had done just a modicum of research I would have learned that celiac disease is extremely common in Europe and is routinely tested before the age of 6 in certain countries. Let's just say that in many places, celiac disease is known, understood, and on their radar screens.

Unfortunately, most U.S. doctors have a vision of the "Old school, classical" celiac....underweight, wasting, distended belly. Very few seem to know that celiacs can be normal weight, frequently are overweight, or can have silent symptoms. The symptoms with which celiac can manifest itself are many....over 200 at least....and it is often called the "great masquerader" for this reason.

My mom nearly died 40 years ago because no one knew and she was repeatedly told it "was in her head." She nearly died. She finally saw a doctor who DID know about celiac, and at 80 lbs. and an intestinal tract that was smooth as glass (villi mostly destroyed), he tested her, she went on a gluten free diet, and several months later she was fine and back at a normal weight.

I had digestive issues from birth, but never fit the classical profile. So no doctor ever considered celiac as a possibility for me since I was not underweight. I just got diagnosed at the age of 56 thru my own efforts....I got tested at Enterolab and found out I had the autoimmune antibodies and both a celiac gene and a gluten sensitivity gene. It cost me $349 to find this out and thru my own efforts I've learned all I need to know about celiac disease and what the diet should be. Too bad a doctor didn't know this....it wasn't all that hard to find out a TON of information via the internet...to read the experts, read the studies, find out what the book are which deal with this subject.

The astounding thing is the probable magnitude and prevalence of this problem within the American population....we who have been diagnosed (a great many thru our own efforts) are just the proverbial "tip of the iceberg."

JUST CURIOUS.....within your own past medical training, what exactly did you learn and study about celiac disease? Virtually nothing, I'd guess. Maybe a paragraph or two somewhere....right? And if you hadn't had symptoms yourself, would you ever have come across this as a possibility? It's great that you know now something about it....but I'm afraid most doctors still do not.

[Guest nini]

Most of the Dr. bashing comes because most of us have had at least one (if not a lifetime of) horrible experiences with a Dr. or Dr's that let their ego get in the way of patient care. It's like any profession, you've got good ones and bad ones... unfortunately most of us have run across at least one bad (or incompetent) Dr. at some point in our lives...

We certainly don't want to bash YOU because you've joined our ranks! You are in a unique position of being both the patient and the Dr. You are also in a very unique position to be able to help many more people. Wether it be through educating your colleagues or recognizing Celiac in your own patients.

I hope you stick around this forum and participate! I for one would love to hear your input from the side of the medical community.

[Nancym]

I think you can get the best treatment by finding the doctor with the same diseases that you have.

[radman]

I was asked about what I learned in medical school about celiac disease. Well, we learned everything known about it at the time, ie. cause (gluten autoimmunity), pathology (injury to intestinal villi), treatment (gluten free diet). We had plenty of information on what gluten was, and what type of intestinal injury occurs. We had tons of instruction on immune system function and dysfunction, etc.

The problem is, all of this occurred during the first 2 years of medical school (the "preclinical" or classroom and laboratory years). I actually even learned about it during my undergraduate nutrition courses in college.

I can honestly say, however, that I never saw a single patient during my last 2 years of school (the "clinical" or hospital ward years) with a diagnosis of celiac disease. And I don't recall any emphasis on the disease during clinical year lectures. We memorized it for tests, but didn't see patients with it and it just wasn't part of our "experience". We saw hundreds of patients with other GI diseases (GI bleeding, peptic ulcer disease, cancers, obstructions, diverticulitis, infections of every stripe, IBS, even tuberculosis of the gut, etc. etc.) but none with celiac. Why? Maybe it's because most adults with celiac have low grade disease, not severe acute symptoms, and do not fit the archaic "classical" symptoms mostly seen in children with more severe forms.

The answer is simply to get doctors to think of celiac for patients with these lower grade symptoms. It's not difficult, it just needs to be on the radar. Not being in the field, I can't imagine why such a common disease is not recognized as such. I get the sense that this is changing, and hopefully future celiacs will not have such a difficult time getting diagnosed.

I also think there is a lot more to learn about celiac, and once the general medical community gets there act together and catches on we may learn some interesting and helpful things.

[ianm]

Radman you are a beacon of hope for the celiac world. I went to dozens of doctors and all they knew how to do was write prescriptions, LOTS of prescriptions. Not once did they ever suggest a food intolerance. I was beginning to think that the only reason a person became a doctor is because they were too damn stupid to be anything else. Now I can finally see that is not true for at least one doctor anyway.

[ravenwoodglass]

II can honestly say, however, that I never saw a single patient during my last 2 years of school (the "clinical" or hospital ward years) with a diagnosis of celiac disease. And I don't recall any emphasis on the disease during clinical year lectures. We memorized it for tests, but didn't see patients with it and it just wasn't part of our "experience". We saw hundreds of patients with other GI diseases (GI bleeding, peptic ulcer disease, cancers, obstructions, diverticulitis, infections of every stripe, IBS, even tuberculosis of the gut, etc. etc.) but none with celiac. Why? Maybe it's because most adults with celiac have low grade disease, not severe acute symptoms, and do not fit the archaic "classical" symptoms mostly seen in children with more severe forms.

I'm sorry to point this out, but you saw lots of celiac patients, they just were not diagnosed. And the idea that "most adults with celiac disease have low grade disease" is ridiculous! By the time I was diagnosed I had had 15 years of progressively worse D, my neurological system was so messed up I had no feeling in most of my legs, no lower leg reflexes, I walked on canes, my joints had so much extra fluid that my ring size would go up and down over 2 sizes and after diagnosis I lost 2 shoe sizes, I had migraines so bad I could often not lift my head, my stomach cramps during my nightly 3 hour bouts with IBS were so severe that I would often come close to passing out, and my joint and muscle pain was so bad at the end I couldn't even type let alone hold a paintbrush. Undiagnosed celiac cost me my education, my marriage, my childs childhood (no movies, no walks by the lake, no bike riding or ball playing) my job, my self respect, my hope for a full life. Yea I was so mildly effected my teenage DD told me a year before diagnosis that she would understand if I committed suicide. You didn't see us Celiacs because noone was looking for them, not because they didn't exist. Low grade disease indeed, and by the way my DS was a poster child for celiac, dropped from 65th percentile to the -10 by a year. Autistic symptoms, tummy aches, ADD, all blown off cause they thought I was a nut case who wanted to be sick....His 'wonderful' Ped used to tell him that if he didn't stop complaining of tummy aches whe was going to send him to a GI where they would do horrible and painful tests to him. She is now head of Pediatrics at our hospital. I apologize if my tone is a bit terse but it is misconceptions like your above post that keep so many of us suffering and dieing in pain while the doctors pump us full of nice gluten filled pills to keep us that way.

[Nancym]

The answer is simply to get doctors to think of celiac for patients with these lower grade symptoms. It's not difficult, it just needs to be on the radar. Not being in the field, I can't imagine why such a common disease is not recognized as such. I get the sense that this is changing, and hopefully future celiacs will not have such a difficult time getting diagnosed.

I think the reason is because the diagnostic tests are too archaic. They're not catching the people before the disease has progressed to a severe point.

The dietary test, if you've got GI symptoms, is too difficult or theyr'e too addicted to grains, for people to really do. Its like asking someone to give up cigarettes for a couple of weeks to see if their poor health is do to smoking.

Then you've got the entirely symptomless folks or the ones with skin manifestations or neurological issues due to gluten that don't have villi damage.

We just don't have a way to catch those.

[Guest nini]

there are specialists out there now that have theories that gluten intolerance is what actually causes IBS, Diverticulitis, Chrons, Colitis, as well as many neurological conditions. Celiac is just not on the radar because most Dr.s are only looking for the classic presentation, and even with classic presentation in children like I had as a child and my daughter had, we are told we are being hypochondriacs and to stop complaining. My mother was told that I was a hypochondriac AND I had an eating disorder (mental) that I was MAKING myself throw up and have horrible diarrhea (yeah as a small child... this makes sense... NOT) My daughter also had classic presentation as an infant/toddler, and I was told that she just wanted attention and I was spoiling her, and I just needed to feed her more whole wheat... How on earth could they look at her skinny arms and legs and distended abdomen, her failure to thrive, anemia, hypoglycemia, projectile vomiting, GERD, chronic diarrhea and bloody painful diaper rashes AND still tell me that she just wanted attention or that I was spoiling her???? I don't get it. My mom said that my daughter had all the same symptoms I had as a baby/toddler... yet it was missed in me for 33 years, until the point where I was OVERweight despite not being able to eat anything or keep anything down, hypertension, hypothyroid, anemia, hypoglycemia, depression/anxiety disorder, non specific seizure disorder, constant vomiting and diarrhea AND my Dr.s were still saying it was all in my head and I needed to go see a shrink... I'd go to the psychiatrist and have them ask me "why are you here?"

Something has to change. The medical community needs to recognize that this is NOT rare and that there are far more subtle symptoms than just the classic presentation.

[gfp]

[lkm

[radman]

Some of you folks are so blinded with anger and hate that you fall into the proverbial trap of lumping every member of a group together. Prejudice, group think, malice, it all springs from the same fountain.

Yes there is a major problem with the medical profession diagnosing celiac disease. BUT I am a victim just like you. I am 42 years old and have only now recognized my problem, and no other doctor figured it out. Should I be angry and bitter. Maybe. But I recognize the problem for what it is. Poor information. It is not greed, drug pushing, stupidity, God complex or any of the myriad of other nasty, mean spirited motives ascribed to doctors. It is ignorance, plain and simple. That's not good, but the fix for it is a lot easier- education.

Anyway, I realize that there will be no changing the hardened minds of many here. They will not be able to see past their anger and resentment. Their mind is closed to other perspectives. Hatred is a bad thing. Try to see beyond it and you may realize that all people are fundamentally the same, with good and bad in varying degrees, and not related to their color, creed, age, sex, or even their jobs. I have met many doctors that are horrible asses, and others that are truly angels. Just like everybody else.