Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Dr.s Are Frustrating Me...


num1habsfan

Recommended Posts

2kids4me Contributor
Oh yes, and I would also like to add that when I was in the ER they sent a nurse in with a sandwich and milk to give to me so I could take prednisone! Ah! The doctor knew I had celiac disease and a milk allergy. I don't think that there was much communication between the doctor and that nurse!

and guess what happned to me after my daughter had her appendix out? She could stomach jello and they asked for an easy to digest gluten-free food tray... after offering her regular toast! My daughter had to remind the nurses more than once that she was celiac... ok, actually I understand that they have a full load of kids to take care of and they can forget diet issues...so the kitchen sent up chicken and french fries - not exactly easy to digest! and bless my little girl - she refused the fries for 2 reasons 1) she wasnt ready to digest that and 2) no one could tell her if they had dedicated fryer!! After that she refused any food unless I okayed it. She was labeled difficult and I was an indulgent mother... HA ... I will accept that label any day if it keeps her "safe" from glutening. I also kept having to remind the nurses daughter has Aspergers and as such, she is very matter of fact about stating her needs, she doesnt have the social "tact" to be nice about it...


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



Celiac.com Sponsor (A8-M):



  • Replies 68
  • Created
  • Last Reply
jerseyangel Proficient
Really? I didn't know that the US ER's had long waits.

Yes, the wait can be that long here. When one of my sons was younger, we took him to the e-room for severe swelling of his shin after a fall. Not an emergency--he wasn't in great pain, but it was a Sunday, he was my first, and I worried about everything. We waited about 3-4 hours to be seen.

On the other hand, when my husband--with severe bee sting allergy--was stung, they rushed us right back when we arrived and I told them what happened. That's why I was shocked at the way you were treated--going in with an allergic reaction. Here, you would have been seen immediately.

Carriefaith Enthusiast
Keep in mind that how good a country's medical system is is a judgment made based on what questions you are asking. You may look at the US and see that it is possible to get an appointment to see a specialist on relatively short notice. I look all these people who get tested and retested and reretested because their insurance will pay for it. I have no insurance, so I see a doctor only when I'm too sick to work, and then I have to have the cash to pay for it when services are rendered.
I guess both systems have their flaws and benefits. I just don't know much about the US health care system.
eKatherine Apprentice
Yes, the wait can be that long here. When one of my sons was younger, we took him to the e-room for severe swelling of his shin after a fall. Not an emergency--he wasn't in great pain, but it was a Sunday, he was my first, and I worried about everything. We waited about 3-4 hours to be seen.

On the other hand, when my husband--with severe bee sting allergy--was stung, they rushed us right back when we arrived and I told them what happened. That's why I was shocked at the way you were treated--going in with an allergic reaction. Here, you would have been seen immediately.

Now when I had bloody d from shigellosis they took me in right away. But otherwise, you wait, and if it's a Friday or Saturday night, forget it. I remember once removing stitches from my palm myself after being unable to get the ER to do it for me.

Carriefaith Enthusiast
and guess what happned to me after my daughter had her appendix out? She could stomach jello and they asked for an easy to digest gluten-free food tray... after offering her regular toast! My daughter had to remind the nurses more than once thats he was celiac... ok, actually I understand that they have a full load of kids to take care of and they can forget diet issues...so the ki9tchen sent up chicken and french fries - not exactly easy to digest! and belss my littel girl - she refused the fries for 2 reasons 1) she wasnt ready to digest that and 2) no one could tell her if they had dedicated fryer!! After that she refused any food unless I okayed it. She was labeled difficult and I was an indulgent mother... HA ... I will accept that label any day if it keeps her "safe" from glutening. I also kept having to remind her she has Aspergers an as such, she is very matter of fact about stating her needs, she doesnt have the social "tact" to be nice about it...
Wow... you would think they would be more understanding and sympathetic.
num1habsfan Rising Star
:o That's horrible! Are you in Saskatchewan?

Yup :blink:

~lisa~

and guess what happned to me after my daughter had her appendix out? She could stomach jello and they asked for an easy to digest gluten-free food tray... after offering her regular toast! My daughter had to remind the nurses more than once that she was celiac... ok, actually I understand that they have a full load of kids to take care of and they can forget diet issues...so the kitchen sent up chicken and french fries - not exactly easy to digest! and bless my little girl - she refused the fries for 2 reasons 1) she wasnt ready to digest that and 2) no one could tell her if they had dedicated fryer!! After that she refused any food unless I okayed it. She was labeled difficult and I was an indulgent mother... HA ... I will accept that label any day if it keeps her "safe" from glutening. I also kept having to remind the nurses daughter has Aspergers and as such, she is very matter of fact about stating her needs, she doesnt have the social "tact" to be nice about it...

When I had my first colonoscopy done, (and obviously wanted to give me something to drink so I could be filled up) they had nothing to offer but some bland/old gluten-free crackers. And it took them asking other nurses before they even knew if they had anything..

~lisa~

penguin Community Regular

I've waited 4-6 hours on more than one occasion, at more than one hospital, with excruciating stomach pain (I could have been bleeding to death internally :rolleyes: ). The only time I got treated quickly was when I had mono and they thought I had meningitis (so I got to wait for 2 hours in isolation.)

It's a crapshoot :blink:


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Really? I didn't know that the US ER's had long waits.

Sometimes even longer. Unfortunately many, too many people in the US have no insurance and if you can't pay your doctor upfront they won't see you. This leaves many who feel they have no option other than the ER because our laws state that they have to treat you regardless of ability to pay unless they are a private hospital. If you are in serious trouble you will get in quickly but things that are considered minor will have to wait and wait.

tarnalberry Community Regular
I would fully expect to wait 4 to 6 hours to be seen here in the US if I were not in very serious condition.

Even in that case, I expect to wait. When I was a freshman, I experienced abdominal pain that had been coming on over the course of the day. It was ... right side? I don't remember - one side. Lower quadrant. Fairly sharpe, intense, and the most pain I've ever been in. I couldn't stand up straight, let alone stand up, and was having a difficult time remaining conscious. (Came awfully darn close to passing out on the way to the ER.) When I got to the ER, in a fairly small place, that wasn't hugely busy, the front desk nurse heard my story, then had me wait in the waiting room, for four hours.

(They think is was a kidney or gall stone, but couldn't positively find out and suspect I passed it (and it was small) before the diagnostic testing. Nothing like that has ever happened again.)

Mayflowers Contributor
Sometimes even longer. Unfortunately many, too many people in the US have no insurance and if you can't pay your doctor upfront they won't see you. This leaves many who feel they have no option other than the ER because our laws state that they have to treat you regardless of ability to pay unless they are a private hospital. If you are in serious trouble you will get in quickly but things that are considered minor will have to wait and wait.

I broke my ankle last month and the ambulance brought me into the emergency room around 4:30 am and you'd think they'd be more considerate since I was in so much pain. They had me sit in a wheel chair holding my leg while they took their sweet time registering me and I waited for about a 1/2 hour with my leg on a chair in the waiting room.. 4:30 AM mind you, no one there ahead of me, mind you, before they finally took me in and put me on a stretcher. Gave me advil for the pain. Ankle broken in 4 places. advil. how considerate of them. They told me I needed surgery. I was in the ER from 4:30 Am untill 9:00 PM that night (had nothing to eat or drink during that time either) before they admitted me to a room. I had surgery that night around midnight. At around 2 PM I begged the nurse for water and she started an IV without an order. Un-believable. :angry:

elye Community Regular

Seems like we all have a waiting list story...Just two days ago I was rushed into ER with what was possibly a transient ischemic stroke, and waited two hours to get into observation (clot-busting drugs need to be administered within three hours), and then another four hours to get a CT scan. Now really, possible heart/brain attacks MUST be addressed immediately. That was just a sickening display, for me, of how bad things have really become. :( I teach at the French Embassy, and their health care system sounds terrific. Vive la France!

Mayflowers Contributor

There's a guy on an MSN groups for hip replacements, which I have bilateral hips replaced due to congenital hip abnormality. He's American and he moved to France because he loves the french so much. He always raved about how wonderful the health care is there. Even the food they serve in the hospital is gourmet. He included pictures of his menu when he posted his post hip replacment pictures.

lightningfoot speakin words Contributor

What I found was that after diagnosed with celiac disease believe it is a good Idea to switch doctors. Not because they are bad or anything but because they have seen you feel sick and feel totally better in like one hour. After being diagnosed with celiac my doctor found it hard to get over why I was feeling sick. He wasn't taking any of my symptoms seriously after celiac disease because he thought I was stressed or hypersensitive afterwards when I was actually sick. He was a great doctor, but I just needed to get a new one. HIH! :lol:

~lighningfoot

2Boys4Me Enthusiast
according to our pediatric gastroenterologist who also researches celiac - any gluten can cause problems. Some are symptomatic - others have no outward symptoms but they will have villious atrophy if the exposure is over a period of time. This doctor cited an example of a patient having severe symptoms continue after being on a gluten-free diet for 6 months, his diet was scrutinized... and then they asked him what he had been doing at work (he was in construction) - he had been helping with the drywall installation at a jobsite. Drywall dust has wheat starch particles. He had worn a regular mask but was still getting sick from inhaling these particles. He bought a special filter air mask (like one would wear when working with noxious gas). His symptoms improved dramatically after that.

You're in/near Nanton, right? Is your pediatric GI Dr. Butzner? He did Ty's endoscopy but Dr. Scott is his doctor.

I understand Nanton has a new gluten-free bakery and they also have many other items as well. Can't remember the name but sort of a gluten-free M&M Meat Shop. Have you tried any of their products or do your other allergies prevent it?

Dawson's mom Newbie

In all of the reading that I have been doing about celiacs disease being so 'common'. I finally came upon the study they seem to have obtained this estimate. And even though out of the 1500 poeple they randomly tested, 1 in 133 people tested positive (but without biopsy as I understand) in fact only 1 in 2000 people are actually diagnosed with it. So even though they estimate this number, most people have not heard of this and most doctors don't think about it because it is not as common as other illnesses. Which in turn is very frustrating for celiacs. I hope you are able to get into your doctor soon and get some relief.

Rikki Tikki Explorer

Hello and welcome Charlene.

I know it's amazing that more doctors don't become aware of it and start checking for the disease. Hopefully things will improve in that regard. It's getting better, wwhen I joined up there were only a little over 500 people on this board, now there re over 10,000. That's in a span of about three years. :D

rinne Apprentice
Hello and welcome Charlene.

I know it's amazing that more doctors don't become aware of it and start checking for the disease. Hopefully things will improve in that regard. It's getting better, wwhen I joined up there were only a little over 500 people on this board, now there re over 10,000. That's in a span of about three years.

Sally, that's amazing, thanks for bringing that to our attention. Wow!

Rikki Tikki Explorer

Well you are welcome. I was just noticing that the other day and it occured to me that it was quite a big jump. Scott has really helped spread the word and bring many of us together. So we should all thank him.

2kids4me Contributor
You're in/near Nanton, right? Is your pediatric GI Dr. Butzner? He did Ty's endoscopy but Dr. Scott is his doctor.

I understand Nanton has a new gluten-free bakery and they also have many other items as well. Can't remember the name but sort of a gluten-free M&M Meat Shop. Have you tried any of their products or do your other allergies prevent it?

Yes we live in Nanton, The new bakery is Terracotto and they make awesome muffins and pizza crusts. The kids still prefer Kinnickinnick Tapioca bread that I make fresh. They have premade lasagna trays etc. They made a batch of muffins for me without raisons and I assume they would do special requests if you ask, I have been told the secret to moist gluten-free muffins is adding applesauce. The bakery is entirely gluten-free, they do sell their stuff in Calgary too - I think the website has info on that. Their website is : Open Original Shared Link

Yes, we see Dr. Butzner - he was so good with both kids - he understood Aspergers and communicated very effectively with my daughter and was kind/empathetic to my son who was upset about dealing with celiac and diabetes. Did you get Lorna as your dietician? She spent over an hour with me the first time and then worked together with the diabetes dietician to help our son.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.