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

  • Welcome to Celiac.com!

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



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Angry, All Doctors Are Inept (Here Anyways)

Cujy

By Cujy
in Doctors

Recommended Posts

Cujy Apprentice
Cujy
Posted

Well just as suspected I have just come from my doctors office, and now them armed with a confirmed celiac diagnosis, have chosen to ignore my urine sample that states significant crystals and significant bacteria. I am in so much pain (side and back) and I was put on pred and pain killers for a week....basically its all the fault of celiac, stay on the diet and get out!

Rrrrrrrrrrrrrrrrrr................

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Well just as suspected I have just come from my doctors office, and now them armed with a confirmed celiac diagnosis, have chosen to ignore my urine sample that states significant crystals and significant bacteria. I am in so much pain (side and back) and I was put on pred and pain killers for a week....basically its all the fault of celiac, stay on the diet and get out!

Rrrrrrrrrrrrrrrrrr................

geesh.....is there an ED you can go to? the crystal part=drink, drink, drink! But if there are truly significant bacteria, why didn't they consider an antibiotic?

Cujy Apprentice
Cujy
Posted
  • Author

She didn't even mention that....because again I gave them a sample today and it was clear. I said the sediment won't come out till tonight or tomorrow morning. I wonder if I go in with a sore throat, or I can't see if they'll tell me its the celiac too!?!? :angry::( I should have bypassed the doc and gone to emerg, but then again they'd tell me Im fibbing again like they did last time before the official diagnosis....They did a CT two and half months ago, she said stones would have shown up on that...well this pain only started two weeks ago, and she snarked at me and said that stones dont grow in two weeks!!!! Again I felt about an inch tall and just ran out of there bawling like a baby....I think I must have left some peel marks pulling out of the parking lot I was so angry....guess my anger management problem that I just had today is a result of celiac too..... :unsure:

tom Contributor
tom
Posted

:angry: Snarky health professionals are very professional.

And did the House show give them the go-ahead to treat patients as a buncha liars?

(Not that I don't like the show overall ;) )

Infuriating.

Cujy Apprentice
Cujy
Posted
  • Author

Tom, I love the show House, its my favorite show in the world....He's a cocky guy, BUT his diagnostics are fabulous. Ive quite often over the last couple months fantasized about meeting with his show consulting team, 18 of the worlds best diagnosticians....ahhh....They'd figure this out I just know they would....We can dream, until then I sit in excrutiating pain wishing all the worlds doctors would take lessons in patient relations!!!!!!!!!!!! :(

frieze Community Regular
frieze
Posted

She didn't even mention that....because again I gave them a sample today and it was clear. I said the sediment won't come out till tonight or tomorrow morning. I wonder if I go in with a sore throat, or I can't see if they'll tell me its the celiac too!?!? :angry::( I should have bypassed the doc and gone to emerg, but then again they'd tell me Im fibbing again like they did last time before the official diagnosis....They did a CT two and half months ago, she said stones would have shown up on that...well this pain only started two weeks ago, and she snarked at me and said that stones dont grow in two weeks!!!! Again I felt about an inch tall and just ran out of there bawling like a baby....I think I must have left some peel marks pulling out of the parking lot I was so angry....guess my anger management problem that I just had today is a result of celiac too..... :unsure:

the stones (if you have any) could have been growing for at least the 2.5 months since the CT scan. Don't know the average time from start to pain. Is your unrine more concentrated when the sediment occurs? Is it granular, or soft, or mucus? Clean out your diet as much as possible. good luck

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Tom, I love the show House, its my favorite show in the world....He's a cocky guy, BUT his diagnostics are fabulous. Ive quite often over the last couple months fantasized about meeting with his show consulting team, 18 of the worlds best diagnosticians....ahhh....They'd figure this out I just know they would....We can dream, until then I sit in excrutiating pain wishing all the worlds doctors would take lessons in patient relations!!!!!!!!!!!! :(

I'm so sorry you're having such a rough time with your Dr. May be time to try a new one?

House is really good at diagnosing..but have you noticed he usually wants to look inside people's brains..no matter what the symptoms? :o You wouldn't want that! ;) LOL

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

Celiac.com Sponsor (A8-M):


quincy Contributor
quincy
Posted

yeah doctors are clueless sometimes. I went to an endocrinologist in 2006 cause I knew something was wrong and I thought it was low testosterone. He basically ran some blood work and told me I was depressed. If he had checked my vitamin D back then my celiac might have been discovered perhaps 4 years earlier than it was. instead I wound up being given lexapro and xanax and what a night mare that was....

I have had IC symptoms lately as well. have you checked out the IC network for more info?

Cujy Apprentice
Cujy
Posted
  • Author

Hi all...glad to know I don't feel like a headcase here! My friend keeps telling me to go to emerg, but last time I did that, they kicked me out after trying to kill me by running a bag of morphine over 5 minutes! Oh and called me a liar about me saying there was blood in my BM.

As for changing docs, can't do it here. The system mandates that if you have a doc yer stuck with them unless you move to another province and can't get to your old one, or your old one leaves. Sucks but true.

Today I am suffering from massive back pain, not sure if its related to the kidney thing. I had the white sediment again last night, and it looks like small white bits, almost like running CLR through a coffee machine, just the flakes arn't as big. It looks like white powder and thats what they said is "significant crystals being dumped". I know from other people that stones can develop quick, even over a span of two months. All I asked for was a renal ultrasound, but no one will do it. Because I had the CT 2.5-3 months ago. I also at the same time had an internal ultrasound but they were checking my ovaries, not even sure if they can see my kidneys on that because it dosn't require the fluid intake as does a renal ultrasound.

By IC you mean collitis? Not even sure what the symptoms are, and would they not see that on a colonoscopy which I already had???

The doc asked me yesterday how my diarhea was....I said, WHAT diarhea???? I never ever had that problem or even said anything about it...so she was making stuff up!!!!!!!!! I was never bloated and never had a problem with BM's other then the blood.

I am at a loss....Ill just suffer with the pain rather then feel like an idiot, or a headcase.

frieze Community Regular
frieze
Posted

Hi all...glad to know I don't feel like a headcase here! My friend keeps telling me to go to emerg, but last time I did that, they kicked me out after trying to kill me by running a bag of morphine over 5 minutes! Oh and called me a liar about me saying there was blood in my BM.

As for changing docs, can't do it here. The system mandates that if you have a doc yer stuck with them unless you move to another province and can't get to your old one, or your old one leaves. Sucks but true.

Today I am suffering from massive back pain, not sure if its related to the kidney thing. I had the white sediment again last night, and it looks like small white bits, almost like running CLR through a coffee machine, just the flakes arn't as big. It looks like white powder and thats what they said is "significant crystals being dumped". I know from other people that stones can develop quick, even over a span of two months. All I asked for was a renal ultrasound, but no one will do it. Because I had the CT 2.5-3 months ago. I also at the same time had an internal ultrasound but they were checking my ovaries, not even sure if they can see my kidneys on that because it dosn't require the fluid intake as does a renal ultrasound.

By IC you mean collitis? Not even sure what the symptoms are, and would they not see that on a colonoscopy which I already had???

The doc asked me yesterday how my diarhea was....I said, WHAT diarhea???? I never ever had that problem or even said anything about it...so she was making stuff up!!!!!!!!! I was never bloated and never had a problem with BM's other then the blood.

I am at a loss....Ill just suffer with the pain rather then feel like an idiot, or a headcase.

I am wondering if the IC she is referring to would be interstitial cystitis?

Cujy Apprentice
Cujy
Posted
  • Author

I have an ovarian cyst but its not the "bad" kind of thats what IC means??? Sorry Im slow! LOL

quincy Contributor
quincy
Posted

I have an ovarian cyst but its not the "bad" kind of thats what IC means??? Sorry Im slow! LOL

IC means Interstitial Cystitis, its a condition where the mucous lining of the bladder breaks down and causes burning, frequency and urgency of urination.

it sounds like if sediment is being released then it is something different than IC. They say that taking magnesium supplements or having a multi vitamin with magnesium will help with the calcification in the kidneys, bladder etc. has anyone else heard of this?

I go on IC-Network as many people with Celiac also have IC.

Archived

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

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


  • Member Statistics

    • Total Members
      127,834
    • Most Online (within 30 mins)
      7,748
    Lucy20
    Newest Member
    Lucy20
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...