• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
mamabear

Top Five Reasons To Get A New Doctor

Rate this topic

Recommended Posts

When I started this thread a long time ago, I was being MOSTLY tongue in cheek!!......It is a sad state of affairs

when you read through it. It is obvious we need better listeners out there with medical degrees !!

Sorry for the "bump".......I just had to!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


When I started this thread a long time ago, I was being MOSTLY tongue in cheek!!......It is a sad state of affairs

when you read through it. It is obvious we need better listeners out there with medical degrees !!

Sorry for the "bump".......I just had to!

I really enjoyed reading this thread.........I read it twice because I was amazed, I know it was meant as irony and it is somewhat sad.......But it was nice to find out that I wasn't alone and that many others had the same twisted experience as I did

Share this post


Link to post
Share on other sites

I was diagnosed with IBS and then later with Crohn's -- neither was a correct diagnosis; the Crohn's diagnosis was jumped to b/c there is a family history, which I also believe was misdiagnosis. I believe there actually is a family history of misdiagnosed celiac disease. I have been given multitudes of meds which not only didn't work but often made me ill themselves. I had endoscopies, gastropscopies, barium enemas and am still paying the bills, even with insurance. I was told it was ridiculous to attempt to affect Crohn's with dietary changes (which I also think is absurd), but followed the SCD food regimen religiously for about 3 years, then gradually began adding other foods. Everything seemed fine and then suddenly I started feeling that I was getting a GI bug or food poisoning every couple of weeks, then every week, having constant watery diarrhea, then I went back to the SCD regimen and things started to improve. In the middle of this period, I was diagnosed with early ostopenia/osteoporosis, had 5 fractures, was given Boniva which made me incredibly ill for 3 full weeks (never took a second dose), was diagnosed with early rheumatoid arthritis, and still no one, of the many doctors, suggested Celiac disease. I began researching RA on the web, followed the recommended vegan diet and then happened on a connection to celiac disease. Every single thing clicked and I immediately tried experimenting with eating a nice piece of lovely homemade bread and a microbrewed delicious beer at a friend's house for dinner. Within 6 hours I was doubled over in pain, vomiting, running a fever and spent the rest of the night in the bathroom. I'm glad those foods were so delicious because that's the last time I'll eat them.

I now have an opportunity to move to a job that I've wanted but resisted because I will lose my current insurance benefits. I haven't bothered to confirm the diagnosis as it doesn't matter to me, as long as I avoid glutens completely I have been fine. I'm not only firing my own doctor, I'm firing all of them. I go to a naturopath and I eat really well. That seems to do it. I'm taking the job.

Share this post


Link to post
Share on other sites

I have to add one other thing about doctors -- they work in a system where insurance companies dictate which procedures you can have and which you can't (unless you want to pay for them on your own), where there is almost always financial pressure in an office to see a specific number of patients, which dictates how much time those patients will get, and where after a few years their early sincerity and optimism has devolved into exhaustion and burnout and disappointment. Doctors also have to be the mediators for the many many people who want to milk the system, either for disability or workman's comp (I'm in the US), for personal gratification and sympathy, or out of actual neurosis/psychosis. After awhile they come to feel that one of their first tasks is to determine if this is a "real" patient, and they understandably find symptoms that are as varied and unpredictable as Celiac disease to be very difficult within their framework. I have several friends who became doctors and I know they aren't the kinds of doctors they imagined themselves being when they started. And in a lot of ways, that isn't their fault.

Share this post


Link to post
Share on other sites

From my brief experience:

He asks, "Is this something that just recently started? Because that's not celiac."

he only runs ONE of the tests in the celiac panel because "it's cheaper and it's the most sensitive anyway."

He calls celiac disease "sprue". (This just shows how out of date he is with the latest literature.)

Share this post


Link to post
Share on other sites
I'm not only firing my own doctor, I'm firing all of them. I go to a naturopath and I eat really well. That seems to do it. I'm taking the job.

I love this post! I feel the same way. However, today I am somewhat hopeful. I had an appointment with a new doctor - a young woman - who not only listened but seemed to click socially with me as we had a lot of shared interests. When I told her my theory on how I think celiac disease may have been dormant and then triggered by Giardia which some studies have said shares the same protein, she finished my thoughts and confirmed it. That's a great sign! She is going to test me for hypothyroidism, and she said she would test for celiac disease also. She asked me if I had ever seen an allergist, and if I had ever had a colonoscopy.. I told her no one had ever referred me. My next appointment is August 22nd. I feel hopeful about her. Of course, in keeping on topic with this thread, she did sneer at my other theory about Candida A. in my gut. Well,

no big surprise with allopathic doctors. :rolleyes:

But, I'm hopeful.

Share this post


Link to post
Share on other sites
When you figure out gluten is a problem ON YOUR OWN through an elimination diet, and you go to the Dr for a celiac blood test, and she says, "You don't have diarrhea. You can't have celiac disease unless you have diarrhea."

When the blood test comes back negative and the Dr says, "See, I told you so. You have IBS. Let me give you a prescription."

When you insist that gluten is the problem, due to dietary response, and she says, "You don't want to be on a gluten-free diet. It's impossible."

OMG - This is SOOOO my story! Have had 3 doctors say the same thing to me - one of which was a gastro enterologist!!

All 3 have told me I have IBS and I have to eat more fibre and try metamucil. When I said the metamucil just makes my constipation worse (because it has wheat in it) they told me to take a laxitive....One doctor told me I should be on anti depressants! Im only drepressed after I eat gluten!!!!

*sigh*

Its so difficult! I know im better on a gluten-free diet. I know im not so constipated on a gluten-free diet, I dont get bloating and stomach cramps and I dont get depression....Im sticking to my diet!!

Share this post


Link to post
Share on other sites

After your positive biopsy and positive bloodwork, your dr says.....I dont really diagnose this too often because following a gluten free diet is hard.. :o

Share this post


Link to post
Share on other sites

When they tell you your results can't be conclusive, after having an unnecessary endoscopy and bloodwork, because you haven't been eating wheat gluten. She didn't tell me before the tests because she didn't want me to risk having an allergic reaction.

Thanks for wasting my time and money, lady. You could have told me ahead of time that they wouldn't be conclusive.

Share this post


Link to post
Share on other sites

When the doctor tells you that they are going to do a blood test for celiac disease, and you tell them that it wont work cuz you havent eaten gluten in 8 months. But the doctor insists it will work. Really do you want a doctor that does not remember basic biology. When testing for antibodys first the body must have that (this case gluten) that makes your body attacks in your system. Duh....! I don't even have a college degree. :angry:

Share this post


Link to post
Share on other sites

Hi,

I am new here and love this forum and this particular thread. I just found out earlier this year that I am gluten intolerant. Not sure if I have celiac disease or what the exact difference is. Years ago I started going to regular GI docs and was told to take fiber, etc. and eventually that it's all in my head and I need to take an antidepressant. I have other issues, too, like candidiasis, other food intolerances, Epstein Barr and more.

I read somewhere in this thread that someone with undetected gluten intolerance also developed intolerances to most other health foods like fruits, veggies, etc. The doctor who detected the gluten intolerance said the true food intolerances are gluten (and wheat), soy, eggs, and dairy. Any other reactions to foods are as a result of the damage eating those five foods have caused. A friend of mine in Germany who is a naturopath agrees. In the past, before I knew about the gluten intolerance, I used to get ELISA food allergy tests. I believed them and in rotation diets and such. However, last year I had one done by a reputable lab in Germany and exactly a week later the same test was done again with some additional foods tested and within that week I had differences. Some foods that showed up non-reactive on the first test were highly reactive on the second test and the other way around. After that I did some research and found that this is quite common.

Anyway, I was wondering what kind of experience everybody else has had with reacting to foods other than gluten. Did you have problems and if so, did those eventually go away as you started avoiding gluten? Did you continue eating those foods or avoid them for a while and then re-introduce them?

Any feedback is greatly appreciated.

Thanks,

Kristina

P.S. So glad to have found this forum! :)

Share this post


Link to post
Share on other sites

Hi Kristina, and welcome to the forum.

My story is perhaps not typical because I recognized problems with corn and lactose, and then tested sensitive to soy, long before knowing gluten was a problem. I definitely avoided corn and milk and cream and ice cream, and was soy-lite for years before going gluten-free (self-diagnosed, it runs in the family). At that time I was so busy looking for gluten that I really didn't pay attention to whether there was soy in things until I developed a huge, red rash, extreme itchiness, hives, etc., and folks on here suggested soy. Well, of course, I had done a lot of replacement of foods with their gluten-free equivalents and almost all of them contained quite large quantities of soy. So that went out the window. Next came the nightshade family, although I have reintroduced potato and some small quantities of tomato, but definitely no green peppers, and I haven't tried eggplant yet because dh isn't particularly fond. My naturopathic testing showed up not just lactose but casein and also eggs, so gave those two up for three weeks but I got worse, and without my morning yogurt I was a basket case. So I added them back in and felt better again. I don't really believe that I am intolerant of eggs and casein).

I have had two outbreaks of splotchy red itchy rash on my face, one after taking a sublingual B12 (think it might have been the mannitol) and again after taking anthocyanin supplements. Now I have been prescribed Humira for my psoriatic arthritis and find that it contains mannitol, so am trying to track down some pure mannitol to test before I start the injections. It is important to me because before I can take the Humira I have to take an antibiotic called Isoniazid in case I have TB (the course lasts 6 months) because I always test positive on the Mantoux test because I had a BCG immunization as a teenager and they can't rule out that I don't have it. The Humira can give you an extreme case if you do happen to carry it. I am sure that this Isoniazid will play havoc with my GI system (the warnings sthat come with it are pages long) :o and I don't want to take it if I don't have to. In the meantime I am testing my vitamin and mineral levels for deficiencies to try to get those under control and work on my skin problems.

So you see, like so many here, there are multiple sensitivities and some of them can go away after time and some do not. I can eat corn (although I don't do massive quantities) here in NZ because it is not GM. But I think all soy in the western world is GM and I totally avoid it (even the soya lecithin in chocolate which I am doing really hard) and all wheat is so hybridized that even if we could eat it originally we sensitive ones certainly never can again. I can eat organic beef but not regular beef. So I have switched to all organic chicken before I become sensitive to that. And I try not to eat too much of any one thing.

I have been gluten free for 10 months, soy free for 6 months, and green pepper free for approx. 5 mos. (and lactose free for 16 years).

Hope this information is of some help to you. I have no problems with fruit (except the anthocyanin supplements which were pretty concentrated). Haven't tried berries again yet, giving my system a chance to forget about that reaction.

Good luck on your own detective work, because you really do have to take charge yourself and discover what your own particular problems are (and as ShayFL says, use the medical people as your assistants.) And everyone here is always ready to help.

Neroli

Share this post


Link to post
Share on other sites

Oh, this is fun. Here goes:

By accident, you find out that you have major bone loss. Your doctor does a few tests, all come back normal and then he tells you that the cause of your bone loss is because you are thin. And you are only 27 years old! That was fun.

My other favorite was post diagnosis. My new doctor read my chart and said:

Share this post


Link to post
Share on other sites

Your doctor thinks that Celiac is a discontinued model from Toyota

  • Upvote 1

Share this post


Link to post
Share on other sites

How about when your doc:

a) implies that problems with gluten are all in your head. (considering you used to come in regularly for issues with asthma, eczema, and constipation....)

B) tells you that celiac is not prevalent in african-americans...so there's no need to test.

or:

when the allergist diagnoses your son and says:

he's allergic to wheat, rye, barley, oats..

You respond: We'll continue to follow a Gluten-free diet.

She says:

He's not allergic to gluten- just wheat, rye, barley and oats...

Share this post


Link to post
Share on other sites

...or when the GI dr tells your oldest son that sinus problems really have nothing to do with celiac disease and when you call for an appt for your youngest son, and the receptionist asks for his symptoms then tells you, "headaches really have nothing to do with celiac disease; he should see another specialist for that." :)

Share this post


Link to post
Share on other sites

This is a great thread! I am so glad to read all of your stories. It's so nice to not be alone. I had a different condition that stumped the first couple of doctors that I saw, the first of which I had seen repeatedly for months. I am blessed, though, in that my doctor suggested celiac disease right off the bat. I was the one who told her it couldn't be that and refused to go to a GI doc for about a year. I had just come off dairy and was feeling a lot better and the pain felt gall bladdery anyway. (I've since read that there is a connection between gall bladder disease and celiac disease.) After a year of on again off again pain, and then realizing I was still having diarrhea, just not as often without the dairy, I decided to cooperate with my doctor.

It seems like the other couple of frustrating health issues I've had were more difficult to dx and treat than celiac disease. I don't even know that I have celiac disease for sure, just that de-glutening has made a WORLD of difference.

Thanks for sharing, all. :)

Share this post


Link to post
Share on other sites

Hilarious! :P Thanks for sharing!

#1000. How about when your doctor sits you down and says that "Sometimes we think we have these symptoms. They seem perfectly real to us. But, actually they are all just in our head."

Gotta love that one!

Share this post


Link to post
Share on other sites

Your Dr. tells you that you are getting older and therefore probably becoming intollerent to Gluten. So go lactose free and cut back whole grain foods and you should probably take a daily stool softener so that when you don't have diarrhea you won't have to strain. :huh:

Share this post


Link to post
Share on other sites
Hilarious! :P Thanks for sharing!

#1000. How about when your doctor sits you down and says that "Sometimes we think we have these symptoms. They seem perfectly real to us. But, actually they are all just in our head."

Gotta love that one!

:lol: :lol:

"Sometimes we think we were paying attention in Medical School, but it was all in our head."

Share this post


Link to post
Share on other sites
you should probably take a daily stool softener so that when you don't have diarrhea you won't have to strain. :huh:

You gotta be kidding! <_<

That takes the cake :o

Share this post


Link to post
Share on other sites
You gotta be kidding! <_<

That takes the cake :o

I kid you not! My jaw hit the floor. Needless to say I started looking for another Dr. the moment I stepped out of her office.

Share this post


Link to post
Share on other sites

when they throw medication at a problem that you have tested negative for

and my mom's story (although she doesn't have celiac, she has another autoimmune disease)

her doctor told her she was overweight...my mom kindly told him "you try being on high doses of prednisone for 6 months and see if you lose weight" the nurses got a chuckle out of it and said that they had gained weight after only being on predisone for a couple of days. jerk.

Share this post


Link to post
Share on other sites

My "Diagnosis'":

Anxiety

Anorexia

Depression

And after spending most of 5 years on crutches on and off and two months in a wheelchair my grad year for unbearable joint pain and the breaking down of tissue in my ankles and knees, which "Couldn't be fixed and you'll grow out of it" they said I was having Phantom pain i.e. ALL IN MY HEAD.

Then the usual IBS

THEN "It happen's to girls your age" after fainting three times in a week at school, which they then attributed to attention seeking.

FINALLY a friend who had Celiac all her life suggested I get tested. The doc wouldn't do it, saying my symptoms didn't fit. I saw an allergist who put me on a gluten-free diet, felt like a new person after a few weeks, had a biopsy 6 months later which showed residual damage that had been healing, not enough to diagnose.

Is there anything we can do?

Share this post


Link to post
Share on other sites

You should change your doctor when:

- your physician knows about your family history (depression, suicides) and label you as a "mental" patient when he sends you to GI and hematologist <_< ;

- your GI checks your colon during the colonoscopy and tells you that you are healthy (he didn

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,930
    • Total Posts
      943,576
  • Member Statistics

    • Total Members
      67,221
    • Most Online
      3,093

    Newest Member
    mahoelzen@gmail.com
    Joined
  • Popular Now

  • Topics

  • Posts

    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • Holy cow! You people are all angels! I have been suffering unbearably with these hot, itchy, and painful bumps on my scalp for a year now. Two doctors had no idea what it was, so I was sent to see a "dermatologist." To my utter shock, he told me I WAS DIRTY! HE TOLD ME TO WASH MY HAIR EVERY DAY with a shampoo called Nizoral, that it would take the itch away. He also prescribed a Vaseline based salve with a steroid in it. Guess what? It did nothing nor did the shampoo, and the more I washed my hair, the worse it gets. It's like torture, and I just can't stop scratching holes into my scalp. Then they scab over, then itch again. I was almost ready to shave my head, until I found this forum. I knew nothing about celiac disease, sensitivity to gluten... I knew nothing. Just so happened that my daughter found a paper talking about celiac during her visit to her GI yesterday. She brought it home for me, and demanded that I read it!  WHAM- a light come on, and I said to her... That IS what I have. I am going to my GP tomorrow to demand that I be tested for ciliac. I am rather terrified, as I am already a type 1 diabetic and have been on insulin for 52 years! I was blaming my diabetes the whole time. I have had a lower left leg amputation, and the last thing I need is to start getting this ungodly rash on my stump!!! Thank you everyone for all of the useful information you have provided in this blog. Maybe I'm not going to die after all! 😉
    • The University of Chicago recommends re-testing 3 to six months after going gluten free and then annually.  Most GIs wisely wait because although you can theoretically heal that fast, it takes TIME to master the gluten free diet.  It can take up to a year or longer for antibodies to come down.  As someone who has more than one autoimmune issue like myself (and only a DGP IgA that has ever been elevated), I think that impacts healing  and how quickly antibodies come down.   My recent endoscopy (5 years post diagnosis) revealed a healed small intestine, yet my DGP IgA was still at 80 (which was over 200 last April when I was somehow exposed to gluten).   Hang in there!  Wait six more months to get retested.  Look for other signs of healing (like anemia resolving, improve gut issues).  
    • Sounds great, one of my dreams is to open a grain free/gluten free food truck.......stone and mortar places would not do well here, but a mobile one able to cater....LOL dream I know, fundraiser has flopped and been running for a year. Hell I had the quotes up, the whole sale contracts setup, the business model and plan. I even tried to get loans, and business partners.....all flopped.
  • Upcoming Events