New To Celiacs...do Doctors Really Understand This Disease?

[BlaBarb]

Hello....I am new to the forum.

I was diagnosed June 2, 2010. I had a colonoscopy/endoscopy in May for symptoms of GERD, bloating, and extreme tiredness. My Dad died in April of colon cancer and I was sure that is what they were going to find. I felt like I would not survive long enough to get a diagnosis. The week after the tests I got a call from my doctor's assistant- "the results are in and the doctor needs to discuss them with you but he does not want to talk about this over the phone- can you come in in 3 weeks". I was convinced they biopsies turned out positive for malignancy.

When I went in the doctor said- "well you have divericulosis other then that the colonoscopy was fine but the biopsy of your duodenum came back positive for celiac disease. So you can try a gluten-free diet if you want but it is really restrictive. I want to do a blood test"

I had the genetic bloodwork the next day. I did not here from him so I called to see if they had the results two weeks later- He said that the test came back one was positive one was negative so he would not say I do or do not have Celiac.

At this point I was so frustrated. I felt like I was beat up from the inside out. I had no energy, could not eat. I was miserable. In researching online I was sure I had Celiac. I posted on Facebook about what I was going through and my cousin, sent me a message that my uncle- Mom's brother- was diagnosed celiac in his 70's and though he died of heart disease the celiac was a contributing factor.

I decided I needed to see another Doctor. I read Dr Green's book "Celiac Disease- A Hidden Epidemic". I made an appointment at Columbia University Celiac Center. In order to have everything with me I requested my records from my GI doctor. When I got them the bloodwork read HLA DQ2 Positive DQ8 Negative- Biopsy Positive Celiac. Which made me think why would my doctor say he would not say I do or not say I dont have celiac disease.

It has been 50 years since I went to the first of three GI doctor when I was 8 years old. Since then I have had repeated upper GI series, Lower GI Series, Endoscopies, Colonoscopies, CT Scans, MRI's, Ultrasounds, Lyme tests the list goes on and on. I suffered from severe back pain, exhaustion, bloating, abdominal pain, nausea, reflux, joint pain, head aches, allegies and weight gain. I was given numerous prescriptions to treat each symptom. I had my gall bladder removed. It was not until the biopsy that was done because of inflammation in the small intestines, that celiac disease was even considered. Again, I was feeling it was all in my head as I had since I was 8 years old.

Anyway my whole point here is, if I had taken my doctors word for it and because the diet is so restrictive just continued the way I was eating I would never have gotten better. After one month of reading this forum, books and other online sources I am feeling so much better. I have eliminated gluten and dairy. I am finding through the process of elimination what I can and can not eat. So far- I can not eat raw vegetables, take my vitamins,or eat breakfast.

My appointment at the Celiac Center is at the end of July. I am hoping to get some more answers.

Thank you everyone for this forum. It is a great tool for the newly diagnosed. It has helped me keep my sanity by know there are others out there that have been through this and are having success!

[poopedout]

I am no expert on this and I still don't know if I have celiac. You, however, have a positive biopsy, one of the genes for celiac, and a positive response to going gluten free. It sure seems like you have your answer. I hope you are not spending a lot of money to see the people at Columbia because you may not need to see them.

[GlutenFreeManna]

I think many doctors are ignorant and I think a small minority of doctors do not want to diagnose Celiac because they are afraid you won't need them for future health problems. Which is also ignorance, since Celiac's often have other conditions related to Celiac's disease. Some doctors probably also like to be able prescribe a "quick and easy fix" by just writing a script for pills. No such pill exists for Celiac's disease.

Based on your biopsy and your gene test, you have celiac's disease. Those positive test results are more than many on this board have. A good strict try of the diet is the only test you have left to do and it sounds like you are doing it. BTW, Welcome to the board!

[glutenfreeinminnesota]

Hey and welcome to the board!! This place has helped me more then anyone can imagine. As far as my GI told me, I had a colonoscopy and endoscopy, and the endoscopy biopsies came back positive for Celiacs Disease. I asked her if that was absolutely, 100% positive and she said yes. I was never told to "try" a gluten free diet....but that I HAD to be on a gluten free diet for the rest of my life. It was, and is, a very hard road...but not as restricted as it used to be. Since November of 2009, when I was diagnosed (8 months?) I have found more and more companies are labeling gluten free on their packaging and more and more restaurants are getting menus and understanding. If you had a positive biopsy..you have Celiacs Disease. It was hard for me to hear that, since I ate anything and everything. Though, I haven't felt this good in 10 years, and I am only 26! I will say though, GI's should know what they are talking about, but when I went to my normal doctor to get the blood tests done (GI suggested at first to make sure gluten free diet is working), they called back and said "no, you don't have Celiacs Disease", though I know I DO, and that my diet is working and of course won't show up on blood tests after being on a gluten-free diet for months now. Anyway, thanks for listening to my rambling! Hope I helped! I wouldn't waste time on more doc visits...if that was your diagnosis, I would get on and stay on that gluten-free diet. Good luck!

[LDJofDenver]

Most of us diagnosed as adults have similar (and frustrating) stories. I don

[ravenwoodglass]

Welcome to the family. No doctors don't understand celiac or the multiple systems it can impact. You are lucky in the respect that you have had a positive biopsy and you know you have at least one of the recognized associated genes. Heaven help those of us who show up negative on blood work and have one of the less recognized celiac associated genes. Like myself.

You have been diagnosed and it sounds like you are doing the right things. I hope you heal quickly. You have found a great group of very supportive folks and a place with a wealth of information.

[mushroom]

In a word, NO; for the most part they do not.

[jackay]

Most doctors don't have a clue. I really like my doctor because he listens to me and will order any test I ask him to. He is the only doctor I've found who tries to get his patients healthy naturally and doesn't prescribe drugs to treat the symptoms. He will prescribe medication if nothing else works.

Although I like my doctor, I am much more educated on gluten intolerance than he is. He knew nothing about cross contamination and just instructed me to eat a wheat, rye, barley and possibly oat free diet. I will continue to educate him so hopefully he can help the next Celiac/gluten intolerant patient he has.

Also be careful with anything that has oats as an ingredient. Oats are often cross contaminated. Yesterday I had my first gluten free oats and so far no problems from them. Normally, I have diarrhea the day after eating anything that contains gluten. Even though certified gluten free oats don't contain gluten, 10% of those that can't have gluten react to them. It appears I am one of the lucky ones that can eat them:)

It is wise to stick with whole foods for a while before eating gluten free processed foods as they often cause problems when first starting a gluten free diet. Stick with meats, fruits, veggies and oils. Nuts are good if you can tolerate them. Also, avoid dairy and soy for a while and then introduce them later to see if you can handle them.

[heathen]

First, everyone MUST understand that it is only in the last 15 years that the medical community figured out that celiac disease is not just a rare disease of childhood. This is what most MDs were trained to believe, and it takes a while to re-learn, but the awareness is growing.

Second, most docs are not aware of the growth of the gluten free movement over the past few years. Again, they were taught that adhering to a gluten free diet was more difficult than most other diets, and they don't want to put their patients on something so restrictive if they don't absolutely have to. So, respectfully educate your docs on the gluten-free foods, restaurants, services available in your area.

Third, I understand that many people who use this forum have had very bad experiences with some of their doctors. Yes, some doctors choose not to keep current and continually educate themselves. However, I feel some on this forum use a pretty broad brush in their characterization of the medical field. Very few doctors are just "in it for the money" or "do not want to diagnose Celiac because they are afraid you won't need them for future health problems." That's just ridiculous. While doctors, blood tests, and biopsies can be 100% wrong, most doctors are acting in what they believe to be your best interests.

Celiac Disease is difficult. None of us have the exact same symptoms, and even "classic" presentations can look like so many other more common things. If your doctors don't "get it," try to help them understand rather than deciding that they don't care about your health.

[mushroom]

I am reminded of the old saw, he who represents himself has a fool for a client. Or he who treats himself has a fool for a patient. So, we do rely on our doctors to know more about something than we do; presumably that is why they have attended medical school and obtained whatever medical degrees and certifications they possess. It is unconscionable to me that a doctor would not keep current in his/her field, no matter when graduation and certification occurred. I know for me in the legal profession, to not keep up with current case law would get you laughed out of the courtroom. But somehow doctors manage to get away with not staying current, even within their specialty, so I am not willing to cut them as much slack as you do. There are continuing education credits that are required, but somehow too many doctors manage to attend these events and end up playing golf and eating at the best restaurants and come away without enhancing their knowledge. Sounds jaundiced?? Probably. But I am, I am afraid.

[Tina B]

Hello....I am new to the forum.

I was diagnosed June 2, 2010. I had a colonoscopy/endoscopy in May for symptoms of GERD, bloating, and extreme tiredness. My Dad died in April of colon cancer and I was sure that is what they were going to find. I felt like I would not survive long enough to get a diagnosis. The week after the tests I got a call from my doctor's assistant- "the results are in and the doctor needs to discuss them with you but he does not want to talk about this over the phone- can you come in in 3 weeks". I was convinced they biopsies turned out positive for malignancy.

When I went in the doctor said- "well you have divericulosis other then that the colonoscopy was fine but the biopsy of your duodenum came back positive for celiac disease. So you can try a gluten-free diet if you want but it is really restrictive. I want to do a blood test"

I had the genetic bloodwork the next day. I did not here from him so I called to see if they had the results two weeks later- He said that the test came back one was positive one was negative so he would not say I do or do not have Celiac.

At this point I was so frustrated. I felt like I was beat up from the inside out. I had no energy, could not eat. I was miserable. In researching online I was sure I had Celiac. I posted on Facebook about what I was going through and my cousin, sent me a message that my uncle- Mom's brother- was diagnosed celiac in his 70's and though he died of heart disease the celiac was a contributing factor.

I decided I needed to see another Doctor. I read Dr Green's book "Celiac Disease- A Hidden Epidemic". I made an appointment at Columbia University Celiac Center. In order to have everything with me I requested my records from my GI doctor. When I got them the bloodwork read HLA DQ2 Positive DQ8 Negative- Biopsy Positive Celiac. Which made me think why would my doctor say he would not say I do or not say I dont have celiac disease.

It has been 50 years since I went to the first of three GI doctor when I was 8 years old. Since then I have had repeated upper GI series, Lower GI Series, Endoscopies, Colonoscopies, CT Scans, MRI's, Ultrasounds, Lyme tests the list goes on and on. I suffered from severe back pain, exhaustion, bloating, abdominal pain, nausea, reflux, joint pain, head aches, allegies and weight gain. I was given numerous prescriptions to treat each symptom. I had my gall bladder removed. It was not until the biopsy that was done because of inflammation in the small intestines, that celiac disease was even considered. Again, I was feeling it was all in my head as I had since I was 8 years old.

Anyway my whole point here is, if I had taken my doctors word for it and because the diet is so restrictive just continued the way I was eating I would never have gotten better. After one month of reading this forum, books and other online sources I am feeling so much better. I have eliminated gluten and dairy. I am finding through the process of elimination what I can and can not eat. So far- I can not eat raw vegetables, take my vitamins,or eat breakfast.

My appointment at the Celiac Center is at the end of July. I am hoping to get some more answers.

Thank you everyone for this forum. It is a great tool for the newly diagnosed. It has helped me keep my sanity by know there are others out there that have been through this and are having success!

If it were me I'd cancel the appointment and do the diet. A biopsy is the most difinitive diagnosis. Sounds like you had the work up backwards. Most GI's I've worked with or have spoken with do the bloodwork first and then confirm with biopsy. why waste more health care dollars and time.

[lucia]

If you go to the website for the Celiac Center at Columbia University and hit the "For Doctors" tab, you'll read that "Recent studies from Columbia University have indicated that it takes an average of nine years from onset of symptoms to diagnosis in the U.S." There's a reason they put that info upfront for doctors.

I have to agree that in general the medical community is flagrantly and disreputably ignorant about celiac. I'm not leveling this charge against every single doctor, but too many are inexcusably ignorant.

I saw a GI doctor who is an affiliate with one of New York's best teaching hospitals, and receives a salary as an Associate Professor. Yet he told me repeatedly that no connection exists between gastrointestinal symptoms and neuropathic pain. All I had to do was type "gastritis" (which he identified through an endoscopy) and "peripheral neuropathy" (which I identified as the official name for "tingling in my arms and legs") into Google in order to reach information about this connection in celiac and in gluten intolerance. Not rocket science, as they say. Not even medical science! Just a desperate laywoman with a computer!

On the other hand, Dr. Peter Green at the Celiac Center has done amazing things for celiacs and those with gluten intolerance. And my family doctor is fantastic, however my scientist friend who referred me to him says that "he thinks more like a scientist than an M.D." Whatever the reason, he doesn't act like he has all the answers, and he's comfortable with ambiguity. I wish med school would train more like him.

[Tina B]

If you go to the website for the Celiac Center at Columbia University and hit the "For Doctors" tab, you'll read that "Recent studies from Columbia University have indicated that it takes an average of nine years from onset of symptoms to diagnosis in the U.S." There's a reason they put that info upfront for doctors.

I have to agree that in general the medical community is flagrantly and disreputably ignorant about celiac. I'm not leveling this charge against every single doctor, but too many are inexcusably ignorant.

I saw a GI doctor who is an affiliate with one of New York's best teaching hospitals, and receives a salary as an Associate Professor. Yet he told me repeatedly that no connection exists between gastrointestinal symptoms and neuropathic pain. All I had to do was type "gastritis" (which he identified through an endoscopy) and "peripheral neuropathy" (which I identified as the official name for "tingling in my arms and legs") into Google in order to reach information about this connection in celiac and in gluten intolerance. Not rocket science, as they say. Not even medical science! Just a desperate laywoman with a computer!

On the other hand, Dr. Peter Green at the Celiac Center has done amazing things for celiacs and those with gluten intolerance. And my family doctor is fantastic, however my scientist friend who referred me to him says that "he thinks more like a scientist than an M.D." Whatever the reason, he doesn't act like he has all the answers, and he's comfortable with ambiguity. I wish med school would train more like him.

So true about how long to diagnosis because symptoms can be sooo different from person to person. I remember reading this article in newsweek years ago. Open Original Shared Link