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
2kids4me
Posted
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
jerseyangel
Posted
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
Carriefaith
Posted
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
eKatherine
Posted
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
Carriefaith
Posted
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
num1habsfan
Posted
  • Author
: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
penguin
Posted

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
ravenwoodglass
Posted
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
tarnalberry
Posted
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
Mayflowers
Posted
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
elye
Posted

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
Mayflowers
Posted

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
lightningfoot speakin words
Posted

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
2Boys4Me
Posted
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
Dawson's mom
Posted

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
Rikki Tikki
Posted

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
rinne
Posted
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
Rikki Tikki
Posted

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
2kids4me
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.