Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Doctors Not Listening To Me...even Laughing


gossamer

Recommended Posts

gossamer Newbie

I am almost sure that I have Celiac. I have many of the symptoms, both gastrointestinal and nonintestinal. However, I also have a mental disorder, so they attribute almost every symptom I come in with as stress. I've been tested for so many diseases and conditions and I am at the end of my rope!

When I suggested that I might have Celiac, my doctor told me he doesn't think I have it but that he'd do blood tests anyway. They took 8 vials of blood, which was relatively painless, and the conclusion was that I tested negative for Celiac (I'm not sure which two Celiac blood tests were performed) and they said that all my nutrient levels, glucose, potassium, & all that, were all in the normal range and that there was no need for further testing, that I obviously do not have Celiac.

Because I'd also scheduled an appointment with a gastrologist, I went to see her and her conclusions were that I have an eating disorder and possibly IBS, which she wanted to check using a colonoscopy, which I refused, so they did a CT scan instead. I have to wait for my next appointment for the results, which I think is idiotic. She scheduled me with a nutritionist for the eating disorder and getting more fiber in my diet....believe me, i get plenty of fiber!!!

I want to know if a colonoscopy can be used to diagnose Celiac, and what I have to do to convince these doctors to actually test me for it, instead of just IBS. I'm not sure if they do a biopsy for IBS or not. I'm really hating my doctors right now and scouting out new ones. My psychiatrist told me that it is very common for other doctors to dismiss any symptoms as merely stress and to treat people with mental disorders badly.

Please give me some advice...I have a difficult time being assertive, especially with doctors

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

It sounds like you are going through a lot! When I was a child, the doctors told my mom and me that I was making myself sick, so, I know how frustrating it can be when you really are ill. If you aren't happy with your doctors, and do not need an official diagnosis, you can always do an elimination diet. If that makes your symptoms go away, then you have your answer!

Good luck!

Link to comment
Share on other sites
Ms. Skinny Chic Explorer
I am almost sure that I have Celiac. I have many of the symptoms, both gastrointestinal and nonintestinal. However, I also have a mental disorder, so they attribute almost every symptom I come in with as stress. I've been tested for so many diseases and conditions and I am at the end of my rope!

When I suggested that I might have Celiac, my doctor told me he doesn't think I have it but that he'd do blood tests anyway. They took 8 vials of blood, which was relatively painless, and the conclusion was that I tested negative for Celiac (I'm not sure which two Celiac blood tests were performed) and they said that all my nutrient levels, glucose, potassium, & all that, were all in the normal range and that there was no need for further testing, that I obviously do not have Celiac.

Because I'd also scheduled an appointment with a gastrologist, I went to see her and her conclusions were that I have an eating disorder and possibly IBS, which she wanted to check using a colonoscopy, which I refused, so they did a CT scan instead. I have to wait for my next appointment for the results, which I think is idiotic. She scheduled me with a nutritionist for the eating disorder and getting more fiber in my diet....believe me, i get plenty of fiber!!!

I want to know if a colonoscopy can be used to diagnose Celiac, and what I have to do to convince these doctors to actually test me for it, instead of just IBS. I'm not sure if they do a biopsy for IBS or not. I'm really hating my doctors right now and scouting out new ones. My psychiatrist told me that it is very common for other doctors to dismiss any symptoms as merely stress and to treat people with mental disorders badly.

Please give me some advice...I have a difficult time being assertive, especially with doctors

Hi,

I wanted to say... that you may not have a mental disorder at all.

Doctors do tend to think people have mental disorders, if they can't find what is wrong with you.

You have to be strong and advocate for yourself..

Do internet research and never give up on you.

Many people with celiac disease and other autoimmune diseases have more than one illness simultaneously Alot of people seem to have three disease's at one time...for example ( thyroid, diabetes, anemia, celiac or whatever)

. I have noticed alot of people here... have thyroid issues which can cause stress and other issues which may seem like mental illness.

Alot of people thought that I had a eating disorder as well. Some people lose huge amounts of weight with celiac disease. In our current society, if you are extremely thin... people automatically assume you are anorexic, you are on drugs or you have HIV...

Celiac isn't a pretty disease at all. It can manifest itself in so many ways..... Don't worry about the ignorant people around you who are badgering you about having a eating disorder.

You have to be assertive... I always sat back too and believed the doctors..

I watched the months go by and years go by... waiting on a doctor to tell what is wrong.

They tested me for things.. I knew, I didn't have and ran up the bill all the time.

Remember, they work for you. I talk to my doctor and any doctor that treats me.

Ask questions... Don't let the doctor just run with things....

In the end... you are the one that controls your health.

Link to comment
Share on other sites
rubyred Apprentice

I'm sorry you're going through this. I had a similar (kinda) experience with one of my GI docs. She thought I had Chrohn's, but 2 weeks later for my follow up, she was like, "well you don't have Crohn's. Do you have a boyfriend?" I was like, excuse me??? She totally just dismissed all of my stomach problems as stress/depression. I was sooo frustrated. It's taken me a LONG time to be able to be assertive with doctors. I'm getting more comfortable with myself but it definitely feels terrible when doctors dismiss everything as just stress or mental instability. I'm in the mental health field, so I know that there's a connection between physical and mental, but that doesn't mean that someone should assume something is mentally wrong with you just because that person can't find what is medically wrong with you. Long story short, I do have Celiac....but it took 3 different GI doctors to actually get a correct diagnosis. So, don't give up! It's a learning process and you'll become more assertive the more you have to keep seeing doctors.

Link to comment
Share on other sites
daphniela Explorer

I don't think your doctor even tested for Celiac. I had all those same tests done and they all came back normal. I had 3 addtional tests done specifically for Celiac and 2 out of 3 were positive. It is a special blood test where they check for antibodies. IgA tests. I had to specifically request these tests. My doctor doesn't know anything about Celiac. Go to the websites: www.celiaccenter.org and www.celiaccentral.org

Those sites wil help you on how to talk to your doctor and what tests you need done. Print out the sheet tha shows your symptoms.

Link to comment
Share on other sites
brazen20au Newbie

just to throw a spanner in the works i was convinced i had coeliac as my dd does, i have the gene/s for it and have a list of symptoms as long as your arm. i expected my dr to laugh at me but she didn't and i had the gastroscopy & biopsy... to find nothing. i don't have it at all.

not that it excuses at all your dr's attitude. but please do be prepared that maybe you don't.

FWIW i'm now gluten-free with no benefits and looking at eliminating dairy as well as looking at possible fructose malabsortion or salicylate issues.

good luck!

Link to comment
Share on other sites
pixiebell Newbie

I was tested for celiac 2 times and finally after 2 years of misdiagnosis I went to see the allergist and found out I have a wheat allergy, which is different from celiac in the way it is tested for. If you have a wheat allergy it won't show up on a test for celiac disease. You have to go to the allergist and get your skin pricked with the allergen.

Just an idea of one possible option to look into. I would hate for anyone to go through what I went through when I trip to the allergist is very noninvasive and you know in that visit if you are allergic or not. I was told a true wheat allergy is more rare then celiac, as a possible explanation as to why I wasn't tested for it sooner, but I am guessing its more common then that.

I also had severe anxiety and panic attacks that I had never had, and cropped up when my symptoms were at there worst and had doctors treat me unfairly because of it. Now that I am gluten free they are non existent.

I hope you can figure out what you have so you can start managing it. Once you do its the most freeing feeling in the world. Also, it is very possible that you do have celiac and the doctors are just being idiots, but a wheat allergy would be a go second step if your celiac test came up negative.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AWonderTree Rookie

Have you searched for a doctor who's been recommended for dealing with celiac disease? Here's one list of recommended doctors.

Even if there isn't a recommended one near you, maybe a long travel would be worth it. Good luck!

Link to comment
Share on other sites
DingoGirl Enthusiast

:angry::angry:

This makes me SOOOOOO MAD!!!!!!!!!!

I went through the same thing.....but I was diagnosed bipolar - and it was very severe. I had a stomach of STEEL all of my life....the bowel issues didn't hit me until 3 or 4 years before diagnosis, at age 44. (I ignored the bowel issues as I'd had a serious case of clostridium difficile and thought that with that, and the stress of deep depression adn anxiety, was the cause of my bowel issues).

First of all......I LOVE the fact that your GI diagnoses you right away with irritable bowel. <_<

That's what they say when they don't know what is causing the problem. Most likely it IS celiac disease..........but this can't be determined by a colonoscopy. You would need an endoscopy and two specific blood tests......more scientific minds on this board can tell you what those are (testing ttg and something else).

I cannot stress to you enough how much my brain and life changed, and continues to change, on a gluten-free diet. Gluten is an opioid polypeptide....really messes with the brains of those susceptible, attaching to the opiate receptors. I felt either incredibly stoned all of my life - could drink POTS of coffee and never feel awake - or so manic that I"ve gone as many as five entire days without sleep. It was unbelievable, and I'm lucky to be here.

I no longer consider myself bipolar, on a VERY strict gluten-free diet. :)

BTW in high school I had skin scratch tests for allergens, and blood work - wheat was NOT on the list of allergens.

Keep reading along here.....you may not find a doctor who knows ANYTHING about Celiac. :angry: You can do a lot of this on your own - read and research and put yourself on the diet, and see how you feel.

Good luck, we're here for you!

Link to comment
Share on other sites
mushroom Proficient

By the way, no, a colonoscopy tells you nothing! about celiac disease. It can diagnose if you have Crohn's disease though or ulcerative colitis. The visualization of the small intestine is done through an endoscopy or gastroscopy (from the other end) and biopsies of the small intestine can, if you have serious damage, diagnose celiac. In fact some doctors still insist that this is "the gold standard" of celiac diagnosis and insist on it even if your blood work is positive. If you have this procedure done you need to be sure that the doctor takes at least five samples as the damage can be patchy. And again, even if this test is negative it does not mean that you do not have celiac disease. It could just mean that you don't have sufficient damage (a 3 on a scale of 1-4) to be considered a positive by the doctors or that the doctor missed the damaged areas

It often seems that doctors will do everything they can to prevent a diagnosis of celiac. Many of them consider the gluten free diet to be "too hard". Well, they don't know how hard it can be to eat gluten and be a celiac!!!

Good luck on your journey. :)

Link to comment
Share on other sites
leethinker Rookie

I haven't been diagnosed yet as Celiac but I think I have it, and am trying to figure it out. I just wanted to say that I had an endoscopy done less than a year ago, where they found inflammation of the duodendum and gastritis type C (no Heliopactor), (they did not do a celiac biopsy as far as I know) the GI actually said it is due to something I'm ingesting, some kind of allergy or something. But when I said to her I think it is gluten, she said to me, "Oh, you don't want to be celiac. It's way too hard to follow that diet and it's expensive too". And then simply dismissed or ignored what I had said!!!!

WHAT THE....???

So, I just want to sympathize with you. I honestly do not understand this whole thing with doctors and their fear of celiac. Is it because they cannot prescribe Celiacs with a pill that will heal them?? Do they feel powerless against Celiac disease or something??? Anyway...

I have heard many times that going gluten-free can alleviate or improve symptoms of bipolar disorder. If that's what you have, then I'd try the gluten-free diet for the sake of your own health. Having said that, I'm still searching for a diagnosis because I want to have an actual diagnosis before committing to a lifetime of no bread, cakes, etc. So I understand if you want to get a diagnosis. But just know that you when you go to the doctor, you have to remember that they will most likely fight it. You have to stand up and fight for yourself and your own health. Sadly, - and for some unknown reason - doctors don't seem to want to help.

Good luck!

Link to comment
Share on other sites
gfb1 Rookie
[snip]If you have this procedure done you need to be sure that the doctor takes at least five samples as the damage can be patchy. [snip]

a bit off topic (perhaps not unusual for me...)

:)

this is an interesting statistical question -- do 5, instead of 3, samples increase the chances of a correct diagnosis ??

the increase of 2 observations only increases the accuracy of diagnosis by a few percentage points (as compared to doing 10-20 samples). its a long statistical argument... but, there is rarely a large improvement of diagnostic accuracy by doing more than 3 samples. if there IS a large improvement... the assay/test is usually not very good to begin with, and a different diagnostic criteria will be used.

Link to comment
Share on other sites
gossamer Newbie
By the way, no, a colonoscopy tells you nothing! about celiac disease. It can diagnose if you have Crohn's disease though or ulcerative colitis. The visualization of the small intestine is done through an endoscopy or gastroscopy (from the other end) and biopsies of the small intestine can, if you have serious damage, diagnose celiac. In fact some doctors still insist that this is "the gold standard" of celiac diagnosis and insist on it even if your blood work is positive. If you have this procedure done you need to be sure that the doctor takes at least five samples as the damage can be patchy. And again, even if this test is negative it does not mean that you do not have celiac disease. It could just mean that you don't have sufficient damage (a 3 on a scale of 1-4) to be considered a positive by the doctors or that the doctor missed the damaged areas

It often seems that doctors will do everything they can to prevent a diagnosis of celiac. Many of them consider the gluten free diet to be "too hard". Well, they don't know how hard it can be to eat gluten and be a celiac!!!

Good luck on your journey. :)

thanks so much!!! imho, if the doctors will do all they can to prevent a celieac diagnosis, it's probably because it's not treatable with drugs.

Link to comment
Share on other sites
mommida Enthusiast

Some studies show that a gluten free diet helps IBS.

If you are finished with the Celiac testing, try the gluten free diet. If you are still seeking a diagnoses you must continue eating gluten for the testing.

I am very sorry to hear you haven't found a doctor willing to work with you in a respectful professional manner.

For what it's worth, I have been treated just as badly without having a mental disorder dx. I was having digestive track issues, water retention, most of the Celiac symptoms, and my toenails fell off. Since I had delivered my baby about 2 months prior to the office visit, it was listed as post partum depression. :huh:

I didn't know depression made people's toe nails fall out. :rolleyes:

Link to comment
Share on other sites
gossamer Newbie

Thanks so much for your response! It's validating to get a response from someone else with a psychiatric diagnosis...I've been diagnosed with almost every mental illness, including bipolar, and it's finally decided, and i agree with, that i have PTSD, Severe Depression & Dysthymia. I've considered most of my bowel issues to be related to the various psychiatric meds I've been on since most of them have bowel-related side-effects. The increase of my non-gastro symptoms in the past few years, a period where i've had less stress than ever, plus hearing about Celiac for the first time a few months ago, is what's causing me to think i have Celiac. It's not like i WANT Celiac....I just want an accurate diagnosis since I've tested negative for everything under the sun for constant and increasing pain, migraines, numbness and tingling, etc etc etc....i had skin scratch tests for allergens as well, only air-bourne allergens...idk why because i went in thinking i had food allergies... but came back with allergies to dust, corn pollen & trees, which explains some things, but not nearly enough.

I am slowly moving over to a gluten-free diet...it's difficult to say the least. If cutting out gluten works, whether I have Celiac or not, I will be greatly releived. thanks again =)

:angry::angry:

This makes me SOOOOOO MAD!!!!!!!!!!

I went through the same thing.....but I was diagnosed bipolar - and it was very severe. I had a stomach of STEEL all of my life....the bowel issues didn't hit me until 3 or 4 years before diagnosis, at age 44. (I ignored the bowel issues as I'd had a serious case of clostridium difficile and thought that with that, and the stress of deep depression adn anxiety, was the cause of my bowel issues).

First of all......I LOVE the fact that your GI diagnoses you right away with irritable bowel. <_<

That's what they say when they don't know what is causing the problem. Most likely it IS celiac disease..........but this can't be determined by a colonoscopy. You would need an endoscopy and two specific blood tests......more scientific minds on this board can tell you what those are (testing ttg and something else).

I cannot stress to you enough how much my brain and life changed, and continues to change, on a gluten-free diet. Gluten is an opioid polypeptide....really messes with the brains of those susceptible, attaching to the opiate receptors. I felt either incredibly stoned all of my life - could drink POTS of coffee and never feel awake - or so manic that I"ve gone as many as five entire days without sleep. It was unbelievable, and I'm lucky to be here.

I no longer consider myself bipolar, on a VERY strict gluten-free diet. :)

BTW in high school I had skin scratch tests for allergens, and blood work - wheat was NOT on the list of allergens.

Keep reading along here.....you may not find a doctor who knows ANYTHING about Celiac. :angry: You can do a lot of this on your own - read and research and put yourself on the diet, and see how you feel.

Good luck, we're here for you!

Link to comment
Share on other sites
gossamer Newbie

you said that i must continue eating gluten for the testing....does that include biopsy testing???? i'm doubting they'll give me more blood tests anyway...but i want to know because i've already started going gluten-free.

Some studies show that a gluten free diet helps IBS.

If you are finished with the Celiac testing, try the gluten free diet. If you are still seeking a diagnoses you must continue eating gluten for the testing.

I am very sorry to hear you haven't found a doctor willing to work with you in a respectful professional manner.

For what it's worth, I have been treated just as badly without having a mental disorder dx. I was having digestive track issues, water retention, most of the Celiac symptoms, and my toenails fell off. Since I had delivered my baby about 2 months prior to the office visit, it was listed as post partum depression. :huh:

I didn't know depression made people's toe nails fall out. :rolleyes:

Link to comment
Share on other sites
gossamer Newbie

thanks...i'm pretty sure i probably do have a mental disorder...but i'd sure be glad to find out i dont!!! i've tested negative for thyroid disease at least twice. As for the eating disorder...i told the gastrologist that i had anorexia when i was a teenager....i was never diagnosed with it, i just think i had it....and that now i binge from time to time. so she said i have an eating disorder. i happen to be obese now....but losing weight....

alot of people have assumed i'm on drugs in the past too...i've never known why...maybe it was because i was so thin when i was younger, but now, who knows???? it's like they look at me and assume it...weird....cuz i've never done any drugs at all.

i try to be assertive with doctors...i tell them what i think is wrong with me....i don't go often enough becuase i have a fear of doctors. however, i don't tell them all of my symptoms because they are so many and the doctors seem to only want to treat one thing at a time. i'm considering making an excel file detailing all my symptoms...it'll be hard to do, but maybe that will work. i also have this thing where i forget everything once i get to the doc's office. LOL....probably part of my fear of doctors. plus i hurt all over and try to drown it out so when they ask, does this hurt? i dont know how to respond. i have to think for a while,, and by then they're on to something else.

Hi,

I wanted to say... that you may not have a mental disorder at all.

Doctors do tend to think people have mental disorders, if they can't find what is wrong with you.

You have to be strong and advocate for yourself..

Do internet research and never give up on you.

Many people with celiac disease and other autoimmune diseases have more than one illness simultaneously Alot of people seem to have three disease's at one time...for example ( thyroid, diabetes, anemia, celiac or whatever)

. I have noticed alot of people here... have thyroid issues which can cause stress and other issues which may seem like mental illness.

Alot of people thought that I had a eating disorder as well. Some people lose huge amounts of weight with celiac disease. In our current society, if you are extremely thin... people automatically assume you are anorexic, you are on drugs or you have HIV...

Celiac isn't a pretty disease at all. It can manifest itself in so many ways..... Don't worry about the ignorant people around you who are badgering you about having a eating disorder.

You have to be assertive... I always sat back too and believed the doctors..

I watched the months go by and years go by... waiting on a doctor to tell what is wrong.

They tested me for things.. I knew, I didn't have and ran up the bill all the time.

Remember, they work for you. I talk to my doctor and any doctor that treats me.

Ask questions... Don't let the doctor just run with things....

In the end... you are the one that controls your health.

Link to comment
Share on other sites
gossamer Newbie

3 GI docs????? thanks for the heads up! And to think i thought it would be rude to consult a different doc...silly me. ;)

I'm sorry you're going through this. I had a similar (kinda) experience with one of my GI docs. She thought I had Chrohn's, but 2 weeks later for my follow up, she was like, "well you don't have Crohn's. Do you have a boyfriend?" I was like, excuse me??? She totally just dismissed all of my stomach problems as stress/depression. I was sooo frustrated. It's taken me a LONG time to be able to be assertive with doctors. I'm getting more comfortable with myself but it definitely feels terrible when doctors dismiss everything as just stress or mental instability. I'm in the mental health field, so I know that there's a connection between physical and mental, but that doesn't mean that someone should assume something is mentally wrong with you just because that person can't find what is medically wrong with you. Long story short, I do have Celiac....but it took 3 different GI doctors to actually get a correct diagnosis. So, don't give up! It's a learning process and you'll become more assertive the more you have to keep seeing doctors.
Link to comment
Share on other sites
leadmeastray88 Contributor
you said that i must continue eating gluten for the testing....does that include biopsy testing???? i'm doubting they'll give me more blood tests anyway...but i want to know because i've already started going gluten-free.

Yes, that includes the biopsy too! It doesn't take long for some people to start healing once they go gluten-free sof if you plan on getting one, you definitely should be consuming as much of it as you can.

I'm sorry you're going through so much trouble. Luckily, most of us can relate :) Good luck

Link to comment
Share on other sites
gossamer Newbie

can i ask what the accuracy is for the different kinds of tests???? you seem to know a lot. what other diagnostic criteria are there for celiac?

a bit off topic (perhaps not unusual for me...)

:)

this is an interesting statistical question -- do 5, instead of 3, samples increase the chances of a correct diagnosis ??

the increase of 2 observations only increases the accuracy of diagnosis by a few percentage points (as compared to doing 10-20 samples). its a long statistical argument... but, there is rarely a large improvement of diagnostic accuracy by doing more than 3 samples. if there IS a large improvement... the assay/test is usually not very good to begin with, and a different diagnostic criteria will be used.

Link to comment
Share on other sites
meganm75 Newbie

I had the worst experience today ever!! I didn't even get to see a Dr. I saw a nurse practioner...OMG I told her all my symptoms I took my food/episode diary in she wouldn't even look at it. I tried to show her this "rash" that I have on my elbows she told me to make another appt that the rash had nothing to do with my problems.. I said can't we do blood test to rule it out at least start somewhere she said NO, it's IBS eat activa, take immodium, and if you still think it's a gluten problem don't eat gluten!!

Needless to say I left the place crying and upset!! I'm so tired of planning my activities around my toliet problems..

Symptoms I have-

diagnosed with ibs but still have PROMBLEMS

Recurring bloating, gas, or abdominal pain

Chronic diarrhea or constipation or both

Unexplained weight loss or weight gain

Pale, foul-smelling stool

anemia

Bone or joint pain

Behavior changes/depression/irritability

Missed menstrual periods

unexplained RASH on my elbows and couple other areas...

gall bladder out 8-08

She acted as if I wanted celiac.... ummmm No I really don't I happen to love lots, and lots of foods with gluten, I just don't like being sick after I eat it!! Finding a GI Dr tomorrow...

rAnT oVeR-

feel free to message me with any OKC, Oklahoma GI doctors they prefer...

Link to comment
Share on other sites
mushroom Proficient

Meagan, I am sorry you had to suffer through such a put-down. Medical professionals only know what they know, and have no idea what they don't know. Yes, get yourself to a new doctor right away if that is how you are going to be patronized and upset. And try to find out ahead of time if they are used to diagnosing celiac disease. I certainly can't help you with Oklahoma. :(

Link to comment
Share on other sites
ravenwoodglass Mentor
I had the worst experience today ever!! I didn't even get to see a Dr. I saw a nurse practioner...OMG I told her all my symptoms I took my food/episode diary in she wouldn't even look at it. I tried to show her this "rash" that I have on my elbows she told me to make another appt that the rash had nothing to do with my problems.. I said can't we do blood test to rule it out at least start somewhere she said NO, it's IBS eat activa, take immodium, and if you still think it's a gluten problem don't eat gluten!!

Needless to say I left the place crying and upset!! I'm so tired of planning my activities around my toliet problems..

Symptoms I have-

diagnosed with ibs but still have PROMBLEMS

Recurring bloating, gas, or abdominal pain

Chronic diarrhea or constipation or both

Unexplained weight loss or weight gain

Pale, foul-smelling stool

anemia

Bone or joint pain

Behavior changes/depression/irritability

Missed menstrual periods

unexplained RASH on my elbows and couple other areas...

gall bladder out 8-08

She acted as if I wanted celiac.... ummmm No I really don't I happen to love lots, and lots of foods with gluten, I just don't like being sick after I eat it!! Finding a GI Dr tomorrow...

rAnT oVeR-

feel free to message me with any OKC, Oklahoma GI doctors they prefer...

For you ((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))) for the NP GRRRRR well words can't express what I would like to say about her response to you without getting me warned for swearing. Do ask when you make the GI appointment about the doctors knowledge of celiac. I would be tempted to write a letter to the doctor marking it 'personal and confidential' and include a list of celiac symptoms printed from the NIH's website with it. When you switch doctors your insurance company will likely send you a letter asking why you were unhappy with the one you had. Tell them. Many thousands of dollars on useless tests are spent by doctors looking for everything other than celiac. It is time it became the first thing they look for rather than the last. For me the last year before I was diagnosed we spent over 10 thousand on copays for specialists, meds and testing which was just a fraction of what the insurance company had to pay. Since diagnosis I rarely see a doctor more than once a year. If worst comes to worse you do have the option of just doing the diet strictly to see if it helps.

Link to comment
Share on other sites
JW88 Newbie

For years I had all kinds of health problems. My doctors ran test after test and found nothing. They said I just suffered from stress.

Turns out that I had a lot of food allergies (as well as TMJ and a hiatal hernia, and required foot surgery - it's amazing how much pain your body can suffer just from a bunion). I pretty-much had to find this all out on my own - doctors were useless (thanks for taking my money, anyway, Doc). So, I am not celiac, but I am allergic to wheat/gluten, chocolate, peanuts, eggs, most dairy products, and a host of other minor things. I am also HIGHLY sensitive to fragrance (I have what's called a toxic reaction since they don't consider sensitivity to fragrance as an allergy).

Artificial sweeteners can also severely disrupt the digestive system, as well as other body systems, so you might want to look at how much "sugar-free" and "diet" foods you are eating/drinking. People have been known to suffer emotional imbalance, digestive disorders, and incredible body pain from ingesting even small to moderate amounts of artificial sweetener. I personally think that crap is pure poison that was approved by the FDA for sheer pocket-lining reasons, but that's just my opinion (based on extensive research, though).

Lastly, a hiatal hernia can cause or affect everything from gastrointestinal upset to depression to headaches to TMJ and everything in between. And being that hiatal hernias are common, but commonly misdiagnosed, this might be worth looking into.

Gossamer, unfortunately you will probably have to figure out what wrong with you yourself. It's been my experience that doctors just aren't that good at diagnosing the REAL problem.

Link to comment
Share on other sites
gossamer Newbie

that is really annoying that i have to diagnose myself. they're the professionals. and whenever i do diagnose myself...i bring in paperwork listing symptoms & prints from websites, etc....and then half the time they don't look at it, and if they do it's just a glance. and many of them have god complexes and seem mad that i'm diagnosing myself. grrrrrrrrr!

For years I had all kinds of health problems. My doctors ran test after test and found nothing. They said I just suffered from stress.

Turns out that I had a lot of food allergies (as well as TMJ and a hiatal hernia, and required foot surgery - it's amazing how much pain your body can suffer just from a bunion). I pretty-much had to find this all out on my own - doctors were useless (thanks for taking my money, anyway, Doc). So, I am not celiac, but I am allergic to wheat/gluten, chocolate, peanuts, eggs, most dairy products, and a host of other minor things. I am also HIGHLY sensitive to fragrance (I have what's called a toxic reaction since they don't consider sensitivity to fragrance as an allergy).

Artificial sweeteners can also severely disrupt the digestive system, as well as other body systems, so you might want to look at how much "sugar-free" and "diet" foods you are eating/drinking. People have been known to suffer emotional imbalance, digestive disorders, and incredible body pain from ingesting even small to moderate amounts of artificial sweetener. I personally think that crap is pure poison that was approved by the FDA for sheer pocket-lining reasons, but that's just my opinion (based on extensive research, though).

Lastly, a hiatal hernia can cause or affect everything from gastrointestinal upset to depression to headaches to TMJ and everything in between. And being that hiatal hernias are common, but commonly misdiagnosed, this might be worth looking into.

Gossamer, unfortunately you will probably have to figure out what wrong with you yourself. It's been my experience that doctors just aren't that good at diagnosing the REAL problem.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,176
    • Most Online (within 30 mins)
      7,748

    a-ball
    Newest Member
    a-ball
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • awright24
      I have my endoscopy on Thursday, has anyone had the procedure done with a cough? I don't have a continuous cough, but every now and then throughout the day I have sort of coughing episodes. They are a lot better than they were but I called endoscopy and they said to speak to my gp and my gp got back to me and said I need to ask endoscopy if its ok if I have it done still.  Help!
    • MMH13
      Thank you so much, everyone. For the moment my doctor just has me taking iron but hopefully we can reconnect soon. I'm going to look into genetic testing, too. Great advice all around and I appreciate it--and you can bet I'm going off the PPIs!
    • Eldene
      I walk fast for fitness, 4 to 6 km per day. I am also 74 years old. Apart from the Celiac challenge, my lifestyle is healthy. I had a sciatiac nerve pinching under my one foot, with inflamation in my whole shin. It was almost cured, when the other shin started paining and burning. I do stretches, use a natural cooling gel and rest my feet. Can Celiac cause muscle pains/inflamation, or is it just over-excercising?
    • LovintheGFlife
      I recently started shopping at a nearby Trader Joe's store. I was surprised at the number and variety of (healthy) gluten-free options sold there. I must admit their low prices are also quite tempting. However, I am curious as to the labeling on all their packages. While none of their products are certified as gluten-free, many are identified as 'GLUTEN FREE' on the packaging. Are these items safe for celiacs? Has anyone tried Trader Joe's products and have there been any adverse reactions?
    • Beverley Ann Johnson
      HI, my doctor suggested one week of consuming gluten before blood tests.  I have been gluten free for 3 years.  Has anyone been through this and will I get exact results after one week of consuming gluten?  I don't even know if I can do this, if I get sick I am not sure if I can continue, any suggestions??  Thanks in advance.  
×
×
  • Create New...