Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

We Need To Start A Thread On Stupid Stuff Doctors Say!
0

280 posts in this topic

My former gastroenterologist stated that my colon was quite twisty and turvy and that this was indicative of IBS! Medical jargon, you know.

"quite twisty and turvy"

hmm...that's a new one. :lol:

0

Share this post


Link to post
Share on other sites


Ads by Google:

"quite twisty and turvy"

hmm...that's a new one. :lol:

Never cease to be amazed! :P

0

Share this post


Link to post
Share on other sites

Never cease to be amazed! :P

I never do.

Not when it comes to anything having to do with the medical community....or celiac...or human nature. :)

0

Share this post


Link to post
Share on other sites

How about : "We don't regard that to be medically significant!" - spoken of my breathing problems before I was diagnosed with COPD. How I hated that woman and I was stuck with her as a PCP in an HMO :ph34r: Supercilious beotch.

0

Share this post


Link to post
Share on other sites

How about : "We don't regard that to be medically significant!" - spoken of my breathing problems before I was diagnosed with COPD. How I hated that woman and I was stuck with her as a PCP in an HMO :ph34r: Supercilious beotch.

:blink: beotch :angry:

shroom, I just sent a bunch of articles to a family member re: COPD and celiac. Guess we can add it to the ever-growing list of related diseases, I am afraid.

0

Share this post


Link to post
Share on other sites




Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

0

Share this post


Link to post
Share on other sites

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

You need to go in to your appointment armed with ammunition, so that if you get that kind of response you can say, "Well, I have this symptom and this, and this, and out of this whole list of symptoms I have X number of them and I think that really could be what is wrong with me. And these are the tests you need to run to find out" :P Do some googling research around here and find the info you need. You can't be a celiac and be a wuss :lol: or you will be an undiagnosed one :ph34r:

Seriously, an armed, informed patient gets a lot further than an indecisive one, but you don't have to go in with all guns blazing. Keep your gun holstered and the ammo up your sleeve until and if it becomes necessary. Then be very calm and reasonable in explaining how you came to believe that is what you have. They (doctors) are capable of learning if we teach them right. :D

Best wishes for a successful appointment.

0

Share this post


Link to post
Share on other sites

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

No reason to worry yet. There are many very good doctors and knowledge regarding Celiac Disease is slowly improving.

The best thing you can do is be prepared. Bring a written list of your symptoms that can possibly be Celiac Disease or Non-Celiac Gluten Intolerance. I find it comforting to have my list of symptoms and all the questions I have thought prior to the appointment right in my hand. There are still times when I forget to ask something, but my appointments have improved greatly since I started this practice.

Remember - your doctor may very well think it's a good idea and order the tests without discussion.

In my opinion the best question for your very first appointment - should the doctor dismiss the need for testing - "Given my symptoms, what harm can running a full celiac panel cause?"

Oh...there is a list of the 300+ symptoms of celiac that someone has posted a few times - maybe someone else can provide it for you. I'll take a peek and see if I can find. It can be handy to take to your appointment as well.

Hang in there :)

Edited - Mushroom beat my post and it is spot on!

0

Share this post


Link to post
Share on other sites

Thank you both for your replies, they were very helpful. I will be sure to have a list of symptoms with me. There is also a letter for the doctor that the Biocard people supply if you get a positive result.

I will be brave! :)

Thanks!

0

Share this post


Link to post
Share on other sites

I hear you on the Dr. shopping! I've been to 6 different ones since my DX in late June. Two of them were Residents who said I was "too old" to have Celiac.

That is funny, I got told by my GI that I was too young to have it at 27 years old. He went on to explain that it was an end of life problem. However, he agreed to do the biopsy because I had the positive blood test and the referral from my GP. He did one sample and then declared that the biopsy was fine, I did not have Celiac and that I could eat bread. This is before I knew anything about it so I was relieved.

I then was curious about the false positive blood test and the fact that I felt so sick, so I looked it up on the internet. After just a little bit of learning, I was positive that I had it. I talked to him about this at a follow-up appointment. I brought up the positive blood test and how we should have gotten multiple samples from different areas for biopsy. He said, "well your white, I wouldn't eat a lot of bread, most white people can't tolerate much carbs." WHATTTTTT? My husband then jumped into the conversation and this guy defended his not celiac diagnosis and sensitive to carbs because I'm caucasian. He ended it with a, "we never have celiacs in my country" comment (he's African).

Thank goodness I can just go gluten free and I don't need any medications/prescriptions from him or anything.

0

Share this post


Link to post
Share on other sites

That is funny, I got told by my GI that I was too young to have it at 27 years old. He went on to explain that it was an end of life problem.

I was 45 when I asked my long-term primary care physician to test me. He said it was a rare childhood disease--I was too old--but he made the referral. :o

0

Share this post


Link to post
Share on other sites

Hay doc, does this antibotic for my broncitus have any wheat or corn in it?

No it doesen"t contain anything like that, i think you"ll be fine.

One phone call to the mfg proved no gluten, but azithromycin (more common known as a z pac) does indeed contain corn.

0

Share this post


Link to post
Share on other sites

The exact same pediatrician who had diagnosed my dd a 2 yr. earlier.

When I mentioned that her younger brother was starting to show the same symptoms. She said it would be really hard having 2 gluten free children, especially considering how expensive it was. So I should just give him a tums before each meal. <_<

Apparently I was supposed to let him get as sick as my daughter had been, just to save money!

0

Share this post


Link to post
Share on other sites

8 months pre-diagnosis dr says "what do you think it could be?".......ummmm if i had a clue i wouldnt be here.....6 months pre-diagnosis "hmmm I wonder if you have celiacs?" .....but didn't test me for it instead ordered a nerve conduction test & a brain mri... man if only she went with her gut and actually tested me for celiacs back then, I would've suffered a few months less and that would've been awesome!!

0

Share this post


Link to post
Share on other sites

Before DX...My regular MD patted my leg and said "well, I'm sure your GYN can fix you up"

After having surgery (many pills, and ct scans)to see if I had a "female" problem, my GYN said.."have we thought to send you to a gastro"

Gastro PA told me it was IBS...only after feeling even worse on that diet, did I go back to eating salads. Feeling somewhat better, the PA asked 4 months later..."have we tested you for Celiac?" The gastro MD doing my endo asked"Why didn't we do this with your colonscopy?" I said "ask your Physcian asst!"

Then after being gluten-free for 8 months and not feeling much better he did another blood test. My levels were almost normal. He said"Maybe you don't have celiac?'

Are you kidding me!!! I told him to go back and look at the beginning blood work and my endo! He said "Yea, you do have celiac grrr! :huh:

0

Share this post


Link to post
Share on other sites

My partner asked her doctor about being gluten free and for some tips. The Dr turned the PC monitor round and showed her a website that she had already read. The Dr clearly had no idea! Time wasted.

0

Share this post


Link to post
Share on other sites

I love this thread!!!! I switched primary doctors because my previous doctorr totally missed PNEMONIA! I explained the MA that my pain level was a 7 and that the pain had been going off and on for years! Dr came in the room and said "Well since you have had this for so many years, I probably wont be able to figure it out. You will just have to deal with is because its a chronic pain issue!' This same dr also explained at a follow up appt when I asked for guidance on a healthy diet she told me that she couldnt advice patients on their health because SHE WOULDNT GET PAID FOR IT AND I SHOULD JOIN WEIGHT WATCHERS!

0

Share this post


Link to post
Share on other sites

I love this thread!!!! I switched primary doctors because my previous doctorr totally missed PNEMONIA! I explained the MA that my pain level was a 7 and that the pain had been going off and on for years! Dr came in the room and said "Well since you have had this for so many years, I probably wont be able to figure it out. You will just have to deal with is because its a chronic pain issue!' This same dr also explained at a follow up appt when I asked for guidance on a healthy diet she told me that she couldnt advice patients on their health because SHE WOULDNT GET PAID FOR IT AND I SHOULD JOIN WEIGHT WATCHERS!

I would have been tempted to report her to the AMA, for the last comment. True, it would not mean much in and of itself, but as part of a paper trail, it couldn't hurt.
0

Share this post


Link to post
Share on other sites

Dreadful isn't it? I asked a number of doctors for help with weight loss over the years. Several have said eat less and exercise more. D'oh, if only I thought of that...

0

Share this post


Link to post
Share on other sites

at the very least they should have referred you to a nutritionist or better yet an actual dietician!

Today I went in for an endoscopy to see what might be causing this stomach pain and other symptoms I've been having for weeks (I've been gluten free for over 2 years but it started with an accidental glutening). When they wheeled me into the treatment room the tech asked me about my symptoms and replied "have you tried cutting out gluten?" >.<

0

Share this post


Link to post
Share on other sites

My fav was my first GI visit 12 yrs ago. A quick behind glove test, and then back to his office for the results.

Dr.: "Stop stressing out, and this should go away"

Me : (nearly crying from being so sick) "ok" not knowing better back then

Dr: "you may also want to pick up some Benadryl for those hives and rashes you have on you skin'"

So stress causes celiac and Benadryl solves DH?? wouldn't that be grand. Wish I had known better back then. On a positive note my dr now rocks and the medical community is finally starting to handle is seriously.

0

Share this post


Link to post
Share on other sites

I don't have too many horror stories...I've been lucky with docs. My family's GP is kind of scary though. Apparently he's a great doctor, but I don't know if I believe the hype! He always fights with his receptionist, which probably raises the blood pressure of everyone in the waiting room. When I had my positive blood test, all of the doctors who saw it said, "woah, yeah, you definitely have celiac" (but recommended the biopsy too, of course). Two gastros recommended that my immediate family members get a blood test, just in case. My dad went in and the GP said that he shouldn't get the blood test if he doesn't have symptoms. 'Cause no one with celiac doesn't show symptoms. I wonder if he'll allow the blood test now that I've been officially diagnosed?

0

Share this post


Link to post
Share on other sites

You know, with celiac being in the news so much lately, you'd think doctors would "brush up" on it. I fear that those who do just go back to the books they studied when they were in medical school rather than getting the LASTEST information.

And that makes me wonder, what OTHER diseases and conditions do doctors not keep up on? No wonder we are taking our lives in our hands every time we visit the doctor!

0

Share this post


Link to post
Share on other sites

You ever get the feeling that most of the doctors out there went to the Frank Burns School of Medicine?

0

Share this post


Link to post
Share on other sites

No, I'm with Bartful -- you need to look at the newest books on their bookshelves, except most of them don't seem to have bookshelves any more (except my PCP, and she has the latest stuff :wub:

0

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
      103,367
    • Total Posts
      917,515
  • Topics

  • Posts

    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed www.bing.com and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • Celiac.com: Gluten-free options increasing to meet demand
      “Over the last 10 years there's been an explosion of gluten-free products,” said Shelley Case, a registered dietitian specializing in celiac disease and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined