Horrible Experience With A Gastro

[mom26boys]

I was referred to a gastroenterologist by my gp after my endomysial ab (iga) screen came back positive. I have been so excited to finally have an answer for all my symptoms, and was looking forward to seeing the gastro to get the endoscopy and finally move on from this diagnostic stage to being gluten free for life!!!

Well, the doctor I went to was horrible! He took a look at me and said that the blood test could have been positive for many reasons (I read on Dr. Green's website that its 100% specific to celiac), and that he doubts I have celiac because I'm too fat and I don't have chronic diarrhea. He had no interest in hearing that the 3 weeks I was gluten free, were the best I've felt in a very long time, nor was he interested in my family history (father had liver/digestive problems all his life and died of liver cirrhosis at 65; and grandmother who died of stomach cancer and had chronic diarrhea all her life). He said he would do the endoscopy, but that my chances of having "sprue" are less than 10%. After that he proceded to tell me that I needed to go on a 1400 calorie/day diet and needed to work out with a trainer or somewhere where there were trainers on hand to help me (as if the thought had never occured to me!!!) I told him I can't lose weight on an 800 calorie diet with exercising 4+ times per week! He said thats impossible, basically implying that I was lying to him and then proceeded to tell me I was to go to the Y and have my workout logs signed in and out by a staff member there and that he wanted to see them and that if they weren't signed, they were no good--like that has anything to do with the reason I went to see him!!! Needless to say, he won't be doing my endoscopy because I just don't trust him! I left practically in tears, mostly at the thought of now having to find someone else and risking getting the same response.

Anyway, this brings me to my question (sorry for venting--I'm still just so upset about it and I know the only people that would understand this frustration are people on this board). I did make an appt. with another gastro, but again, I'm risking getting the same response, and I have to eat gluten for another week, so I'm actually just thinking of giving up on the endo and getting right into the diet. I desperately need to feel better!!!

I wanted the endoscopy, especially after finding out about my grandmother's history, because I'm concerned about any cancers that may have started, but I'm wondering if it may be better to get a genetic test first and then just use that as my own diagnosis. Is the genetic test something that can be ordered through a doctor? I asked my gp and he said they're not commercially available, but I see ads for them all the time on celiac websites, like this one. I would really like to have it done through my insurance because our deductible for this year has been met and it will cover 100% until the end of the year. My real main concern is having my kids tested, because if they have the gene for it, I want to save them years of agony like I've had. I'm already suspicious of 2 of my kids. Does anyone have any input on this? I didn't know if I should ask their pediatrician to test them or if I need to see a geneticist.

Sorry for the long post, but thank you for "listening" to my venting! I'm still so new to all this and I'm so thankful for this forum!

[ravenwoodglass]

I can't use the words I feel like using about that 'doctor'.

You say you did the diet for 3 weeks and noticed a real difference in the way you felt. IMHO I would take that and your postive blood tests as your diagnosis and just get on with healing.

[mushroom]

This man makes me sputter!!! I hope all those who have had positive diagnostic experiences read what the others of us have had to suffer through. The nerve of this idiot, revealing his ignorance in all its glory, and so damned arrogant and derogatory to boot!!

With what you have already, positive blood test and positive dietary response, you don't need any further celiac diagnosis. Later, if the cancer issue still bothers you, you can always have an endoscopy. You can do the spit test to find out if you have the celiac genes--look at the side panel on the left today. If yours is positive you can do the same for your kids.

[grainfree]

I'm sorry to hear you had such a bad experience with your gastroenterologist. Trust your instincts, you felt better without gluten products, and for many that is diagnosis enough. I agree with ravenwoodglass and mushroom. They have offered the same advice I would have offered. I wish you a better experience.

[nu-to-no-glu]

O man, this makes my blood boil, because I am going through exactly the same thing. I literally felt my blood pressure rise when reading your post...arggggh!

I think I have changed dr's about 6-7 times (twice in the past 2 months) b/c of ignorance and the way they treat me (For a while I thought I was crazy and felt guilty about it)...you should check out my 1st post from last week (I think if you click on my user name it should show up)...I am having the same frustrations as you, but most of the responses I got really has helped me figure out my next plan of action, and they'll probably help you too.

My husband works for Whole Foods Market and has met many clients who have celiac disease and he made me an appt. with a dr recommended to him. This man is an allergist/immunologist who has the disease himself...I never thought of going to this type of dr. I've been seeing GI specialists forever, and I find them insensitive and not very helpful (not all, but just the few I have seen. The last one told me that my only problem was my weight and I should exercise and I'd feel better...when I told him that I have no energy and even showering in the morning is exhausting, his response was "well, maybe if you exercised, that wouldn't happen!")...

maybe you could call your local celiac chapter and ask for a dr. that actually knows updated information on this disease? I think you'll find what I have found on this site (which I love b/c of all of the support, similarities, and loads of information)...a lot of people having the same struggles, looking for answers, frustrated by doctors...I hope you find someone to help you, just as I hope for myself

[LDJofDenver]

I'd get a new GI doc if you pursue the endoscopy. Obviously this one hasn't stayed up information related to this disease. Any of the major US celiac centers websites all list: weight loss OR weight gain among the many symptoms.

I was a good 25+ pounds overweight when diagnosed. It is a myth that all celiacs are wasting away and look anorexic (although many do, don't get me wrong). I am diagnosed both by positive blood work and endoscopy (biopsy).

If you feel you need the endoscopy, see if you can find a local celiac chapter (through Celiac Sprue Association or Gluten Intolerant Group) that may be able to give you the name of one or two good GI docs that are up on Celiac Disease.

[ang1e0251]

I am so sorry you had to go to such an ignorant, condescending man. I wish the same treatment on him when he needs compassion. I remember watching a movie, can't recall the name, where the surgeon has to have a biopsy and cannot speak afterward. He is in a common hospital room and is given a barium enema meant for the patient in the next bed. He tries to show them he is not the man they need to treat but as normal they just ignore him. When he can, he complains to his dr who blows him off. By the end of his cancer treatment, he really has compassion for patients and sees how harmful his attitude has been.

I know this doesn't really help you but isn't it satisfying to think of your GI being treated like he's treated you?

The others have given you good advice but I would agree at some point you probably want to get scoped for the cancer. That would set your mind at ease.

[JillianLindsay]

I'm so sorry you had such a terrible experience.

Personally I really wanted (and still want) to go all-out, 100% with all the testing to know 100% for sure if I have celiac disease. It can help with tax breaks (depending on where you live) on specialty foods and personally it will give me peace of mind to know that we got it right. Some are ok with a positive response on the diet as their dx, it's totally an individual choice.

On the plus side you were able to get a new GI DR... it's totoally your choice, but if I were in your shoes I think I would still get the endo to find out of you have flattened villi and also to screen for any other diseases of the small bowel. I think it's smart to be thorough, but I live in Canada and did not have to pay for my testing so it's easy for me to say all of this.

If I were you I would also write a formal complaint about that DR to the governing body (College of Physicians & Surgeons here). It may not get anywhere, but at least you've started a paper trail so that if you or someone else has problems with him in the future, there is a reord of a previous complaint.

Good luck to you whatever you decide and I hope you meet compassionate, understanding DR's in your future.

Jillian

[Mrs.Doyle]

OH how I feel your pain and rage and all those ucky feelings toward the idiot with a piece of paper that says he's a doctor. Good for you for taking your well being into your own hands and getting a different doctor. Make sure your GP hears about your experience so they can stop making referrals to such an incompetent fool, at least it might help someone else from having the same terrible experience or at best it will help the idiot to become a better... oh never mind, I don't think idiots like that care to improve themselves

I recently jostled around the biopsy question when my tests came back negative. I had been gluten free and then challenged for only about a week, which really wasn't enough of a challenge. I was so miserable on the gluten that I just couldn't push through to get a biopsy that would provide me with a piece of paper saying what I already know: don't eat gluten it makes you sick. I had to really struggle to break free of the need to have a "professional" tell me what my body already had. And the idea of an invasive procedure didn't sound fun.

But that was about the gluten... cancer is a whole other beast and reason for a good screening, but that can happen on or off gluten

[MNBeth]

I was intimidated out of having the endoscopy by a couple of GI docs, but I wish I'd pushed back and gotten it done before I went off gluten. (I didn't have a positive blood test, though, so the situation was a bit different. My father, however, and a cousin or two are clinically diagnosed celiacs.) Anyway, I do find it inconvenient at times not to have the firm diagnosis. It's not the end of the world, but there are times when it would simplify things if I could just say I have celiac disease.

But you're soooo right not to have it done by *that* guy. Yikes.

[Gemini]

I was referred to a gastroenterologist by my gp after my endomysial ab (iga) screen came back positive. I have been so excited to finally have an answer for all my symptoms, and was looking forward to seeing the gastro to get the endoscopy and finally move on from this diagnostic stage to being gluten free for life!!!

Well, the doctor I went to was horrible! He took a look at me and said that the blood test could have been positive for many reasons (I read on Dr. Green's website that its 100% specific to celiac), and that he doubts I have celiac because I'm too fat and I don't have chronic diarrhea. He had no interest in hearing that the 3 weeks I was gluten free, were the best I've felt in a very long time, nor was he interested in my family history (father had liver/digestive problems all his life and died of liver cirrhosis at 65; and grandmother who died of stomach cancer and had chronic diarrhea all her life). He said he would do the endoscopy, but that my chances of having "sprue" are less than 10%. After that he proceded to tell me that I needed to go on a 1400 calorie/day diet and needed to work out with a trainer or somewhere where there were trainers on hand to help me (as if the thought had never occured to me!!!) I told him I can't lose weight on an 800 calorie diet with exercising 4+ times per week! He said thats impossible, basically implying that I was lying to him and then proceeded to tell me I was to go to the Y and have my workout logs signed in and out by a staff member there and that he wanted to see them and that if they weren't signed, they were no good--like that has anything to do with the reason I went to see him!!! Needless to say, he won't be doing my endoscopy because I just don't trust him! I left practically in tears, mostly at the thought of now having to find someone else and risking getting the same response.

Anyway, this brings me to my question (sorry for venting--I'm still just so upset about it and I know the only people that would understand this frustration are people on this board). I did make an appt. with another gastro, but again, I'm risking getting the same response, and I have to eat gluten for another week, so I'm actually just thinking of giving up on the endo and getting right into the diet. I desperately need to feel better!!!

I wanted the endoscopy, especially after finding out about my grandmother's history, because I'm concerned about any cancers that may have started, but I'm wondering if it may be better to get a genetic test first and then just use that as my own diagnosis. Is the genetic test something that can be ordered through a doctor? I asked my gp and he said they're not commercially available, but I see ads for them all the time on celiac websites, like this one. I would really like to have it done through my insurance because our deductible for this year has been met and it will cover 100% until the end of the year. My real main concern is having my kids tested, because if they have the gene for it, I want to save them years of agony like I've had. I'm already suspicious of 2 of my kids. Does anyone have any input on this? I didn't know if I should ask their pediatrician to test them or if I need to see a geneticist.

Sorry for the long post, but thank you for "listening" to my venting! I'm still so new to all this and I'm so thankful for this forum!

You are correct....the endomysial antibody is 100% specific to Celiac Disease and a positive one + a positive tTg ranks in at 98% certainty of Celiac Disease.

So, congratulate yourself that you are smarter than this so-called GI doctor! You are also smart to include past family history, which sounds highly suspicious for celiac disease.

How important is a diagnosis to you? I went through many doctors because of such an attitude and ended up figuring it out for myself, then going back to my thyroid doctor and asking specifically for testing for celiac disease, which turned out flamingly positive. I also met a very overweight, biopsy proven Celiac at a dine-out a few months back and she went through hell getting diagnosed because of her weight. Go with your gut instincts and either find another doctor who has brains and ears which listen or just go gluten-free for life on your own and don't worry what the medical profession thinks about your situation. You could also do the gene testing to see if you carry one of the main Celiac genes. I did and it gave me all the answers I needed, along with my blood work and dietary response.

Good luck!

[mom26boys]

Wow! Thank you ALL so much for your words of encouragement and your good advice! It is SO comforting to know that you all understand and don't think I'm crazy! For years I've thought it was me and I deserved to be treated that way because I'm fat. Not anymore!!! Thank you all for giving me the courage to do what is right and stand up for myself in my journey to be healthy. It is such a great feeling to have people who support you and cheer you on, even if we've never met. Thanks again!!!

Connie

[TrillumHunter]

He's completely out-of-date about a disease of his specialty that affects 1 in 100 people. Move on. Chances are he'd only take three samples during your biopsy anyway.

I'm a blood/biopsy diagnosed fat celiac, too.

[mushroom]

I've just realized that none of us has really answered your question about getting genetic testing done through your insurance. A lot of doctors don't know how to order them or from where, and some insurances will pay for them with pre-authorization. See the following link:

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

Hope this helps.

[mom26boys]

I've just realized that none of us has really answered your question about getting genetic testing done through your insurance. A lot of doctors don't know how to order them or from where, and some insurances will pay for them with pre-authorization. See the following link:

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

Hope this helps.

Thank you! I'm delving into the article right now!!! You are awesome!!!

[jerseyangel]

mom26boys--I had genetic testing done through Quest Diagnostics. My GI ordered it and my insurance paid in full.

Best of luck!

[mom26boys]

mom26boys--I had genetic testing done through Quest Diagnostics. My GI ordered it and my insurance paid in full.

Best of luck!

Thank you! Thats great to know! I just read the article the previous posted suggested and I was ecstatic to see that Quest offers it, so I'm printing the article and taking it to my attempt at seeing a gi next week. Thanks again!

[mom26boys]

I've just realized that none of us has really answered your question about getting genetic testing done through your insurance. A lot of doctors don't know how to order them or from where, and some insurances will pay for them with pre-authorization. See the following link:

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

Hope this helps.

Wow! I just had to come back on and tell you what a great article that is! It answered so many of my questions! Thank you for the link. I printed it out and I'm taking it next week to my next attempt at seeing a new gi I will definitely be more prepared this time around! Thanks again!!!

[mom26boys]

He's completely out-of-date about a disease of his specialty that affects 1 in 100 people. Move on. Chances are he'd only take three samples during your biopsy anyway.

I'm a blood/biopsy diagnosed fat celiac, too.

You are so right! He is providing a huge diservice to his patients who trust him and pay him to be educated in his specialty. I am moving on. I have another appt. with a different one, so I will be much better prepared this time around!!! Thank you

[mom26boys]

I am so sorry you had to go to such an ignorant, condescending man. I wish the same treatment on him when he needs compassion. I remember watching a movie, can't recall the name, where the surgeon has to have a biopsy and cannot speak afterward. He is in a common hospital room and is given a barium enema meant for the patient in the next bed. He tries to show them he is not the man they need to treat but as normal they just ignore him. When he can, he complains to his dr who blows him off. By the end of his cancer treatment, he really has compassion for patients and sees how harmful his attitude has been.

I know this doesn't really help you but isn't it satisfying to think of your GI being treated like he's treated you?

The others have given you good advice but I would agree at some point you probably want to get scoped for the cancer. That would set your mind at ease.

Oh, yes, it most certainly is satisfying!!! I have thought a lot about that these last couple of days!!! Thank you!

[mom26boys]

O man, this makes my blood boil, because I am going through exactly the same thing. I literally felt my blood pressure rise when reading your post...arggggh!

I think I have changed dr's about 6-7 times (twice in the past 2 months) b/c of ignorance and the way they treat me (For a while I thought I was crazy and felt guilty about it)...you should check out my 1st post from last week (I think if you click on my user name it should show up)...I am having the same frustrations as you, but most of the responses I got really has helped me figure out my next plan of action, and they'll probably help you too.

My husband works for Whole Foods Market and has met many clients who have celiac disease and he made me an appt. with a dr recommended to him. This man is an allergist/immunologist who has the disease himself...I never thought of going to this type of dr. I've been seeing GI specialists forever, and I find them insensitive and not very helpful (not all, but just the few I have seen. The last one told me that my only problem was my weight and I should exercise and I'd feel better...when I told him that I have no energy and even showering in the morning is exhausting, his response was "well, maybe if you exercised, that wouldn't happen!")...

maybe you could call your local celiac chapter and ask for a dr. that actually knows updated information on this disease? I think you'll find what I have found on this site (which I love b/c of all of the support, similarities, and loads of information)...a lot of people having the same struggles, looking for answers, frustrated by doctors...I hope you find someone to help you, just as I hope for myself

I just now got a chance to read your post from last week. Actually I reread it--I had actually read it last week and it really touched me, as it did when I read it again today. You have definitley gone through so much! Your story actually reminded me of times in preschool when I would have diarrhea that would run down my legs and it was so embarrasing for a 4 year old!!! Makes me realize I may have had this a lot longer than I thought. Definitely get your baby tested. Imagine saving him those years of misery as you mentioned. Plus the fact that he will get used to the gluten-free diet as he grows up and he won't be tempted to "cheat" since thats all he will have known. I wonder if you can just tell the pediatrician that you have celiac and just have him tested. I've been wondering if I really need an official dx for that. I mean, are they really going to ask for proof? Then again, the insurance may not pay since they would have records of your history and would not have a dx on file. Why does it have to be so complicated??? The Enterolab sounds like a great option, but with 6 children it can get expensive for me so I'm hoping I can get it done through insurance.

You actually gave me a great idea from the fact that your husband works at Whole Foods! The thought never even occured to me that there are probably people that work there that have either celiac or gluten sensitivities that could probably give me a good recommendation for a doctor. I'm going to start asking around next time I go. I love Whole Foods and shop there every chance I get (even if I have to get accosted by protesters !)

Thanks again for your great advice. I too hope you get the diagnosis that you need. I know for me, it would just be so nice to finally be validated and know that I'm not crazy and its not in my head or because I'm fat. Thanks again for posting. I love this board!!!

[amandabear20]

I was referred to a gastroenterologist by my gp after my endomysial ab (iga) screen came back positive. I have been so excited to finally have an answer for all my symptoms, and was looking forward to seeing the gastro to get the endoscopy and finally move on from this diagnostic stage to being gluten free for life!!!

Well, the doctor I went to was horrible! He took a look at me and said that the blood test could have been positive for many reasons (I read on Dr. Green's website that its 100% specific to celiac), and that he doubts I have celiac because I'm too fat and I don't have chronic diarrhea. He had no interest in hearing that the 3 weeks I was gluten free, were the best I've felt in a very long time, nor was he interested in my family history (father had liver/digestive problems all his life and died of liver cirrhosis at 65; and grandmother who died of stomach cancer and had chronic diarrhea all her life). He said he would do the endoscopy, but that my chances of having "sprue" are less than 10%. After that he proceded to tell me that I needed to go on a 1400 calorie/day diet and needed to work out with a trainer or somewhere where there were trainers on hand to help me (as if the thought had never occured to me!!!) I told him I can't lose weight on an 800 calorie diet with exercising 4+ times per week! He said thats impossible, basically implying that I was lying to him and then proceeded to tell me I was to go to the Y and have my workout logs signed in and out by a staff member there and that he wanted to see them and that if they weren't signed, they were no good--like that has anything to do with the reason I went to see him!!! Needless to say, he won't be doing my endoscopy because I just don't trust him! I left practically in tears, mostly at the thought of now having to find someone else and risking getting the same response.

Anyway, this brings me to my question (sorry for venting--I'm still just so upset about it and I know the only people that would understand this frustration are people on this board). I did make an appt. with another gastro, but again, I'm risking getting the same response, and I have to eat gluten for another week, so I'm actually just thinking of giving up on the endo and getting right into the diet. I desperately need to feel better!!!

I wanted the endoscopy, especially after finding out about my grandmother's history, because I'm concerned about any cancers that may have started, but I'm wondering if it may be better to get a genetic test first and then just use that as my own diagnosis. Is the genetic test something that can be ordered through a doctor? I asked my gp and he said they're not commercially available, but I see ads for them all the time on celiac websites, like this one. I would really like to have it done through my insurance because our deductible for this year has been met and it will cover 100% until the end of the year. My real main concern is having my kids tested, because if they have the gene for it, I want to save them years of agony like I've had. I'm already suspicious of 2 of my kids. Does anyone have any input on this? I didn't know if I should ask their pediatrician to test them or if I need to see a geneticist.

Sorry for the long post, but thank you for "listening" to my venting! I'm still so new to all this and I'm so thankful for this forum!

Wow what a 'doctor.' obviously he is not very knowledgable when it comes to celiac disease.

[luvs2eat]

You've already been given good advice here, but I just wanted to tell you that I never got that "unexplained weight loss" either from my celiac. Then, I gained about 30 lbs. after going gluten free filling up on the foods I COULD have to make up (in my head) for all the ones I could no longer have!

I was diagnosed w/ blood work only as well. My (really nice) GI doc told me an endoscopy wasn't necessary w/ such positive blood work, altho I did end up having one a few years later for acid reflux symptoms.

I have a friend who's just been diagnosed w/ Crohn's disease. I told her the best advice I could give her was to look around for a forum like this one, where she could ask ANY question (no matter how stupid or graphic) and peeps who KNOW and LIVE w/ the disease would be the ones to give her info she needs... better than any doctor!!

Good luck w/ your new doc!!