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

Not A Good Day At The Hospital And Feel So Lost Now.

Dellers

Recommended Posts

Dellers Apprentice
Dellers
Posted

I went to the hospital for my results today. It is not celiac but gluten intolerance what ever that means. So basically I have Ibs. All my results were normal and with my symptoms they could have expected to diagnose me with celiac. Doctor was very rude and had me in tears. He was not even the doctor I was talking to about my symptoms. He only came into the room to show the other dr how to use the computer. I just feel so lost at the moment.

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

Celiac.com Sponsor (A8-M):


shopgirl Contributor
shopgirl
Posted

It's frustrating not getting answers but don't give up looking if you feel there really is something there. I spent months and months going to doctors and getting tests, constantly hoping something, anything would come back positive to explain my symptoms. I went to doctors who dismissed me, insisted it was in my head, one who even laughed at me, until I finally got the Celiac diagnosis. So cry it out, get someone you love to give you a hug, and then keep going.

And there's no one who says you can't try going gluten-free to see if it improves your symptoms. Tests are infallible and doctor's most certainly are too.

Dellers Apprentice
Dellers
Posted
  • Author

It's frustrating not getting answers but don't give up looking if you feel there really is something there. I spent months and months going to doctors and getting tests, constantly hoping something, anything would come back positive to explain my symptoms. I went to doctors who dismissed me, insisted it was in my head, one who even laughed at me, until I finally got the Celiac diagnosis. So cry it out, get someone you love to give you a hug, and then keep going.

And there's no one who says you can't try going gluten-free to see if it improves your symptoms. Tests are infallible and doctor's most certainly are too.

Thank you. I have been on a gluten free diet and even the shakes in my hand and hip pain has improved.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you. I have been on a gluten free diet and even the shakes in my hand and hip pain has improved.

I'm sorry you had such a bad experience. Unfortunately it isn't uncommon. Stay on the diet strictly for at least a couple months. The testing for celiac leaves a lot to be desired and it misses up to 30% of us. If you have had the biopsies get on the diet full force now. If you haven't had biopsies then wait to start the diet until those are done. If you went gluten free or gluten light before the testing that in itself will cause a false negative.

Dellers Apprentice
Dellers
Posted
  • Author

I'm sorry you had such a bad experience. Unfortunately it isn't uncommon. Stay on the diet strictly for at least a couple months. The testing for celiac leaves a lot to be desired and it misses up to 30% of us. If you have had the biopsies get on the diet full force now. If you haven't had biopsies then wait to start the diet until those are done. If you went gluten free or gluten light before the testing that in itself will cause a false negative.

Hi raven. I have had the biopsies done they got one sample as I was intolerant to the procedure . That came back fine also I explain to them that I only had been on the challenge for less than two weeks before having that done and that I was on a very strict gluten-free diet for 10 months. Today she took a DNA test ?? and she is going an ESR test and a total IgA IgG as my IgA is 0.4 ( I think that is Iga deficient )

Mari Contributor
Mari
Posted

You can call and have the lab tests results sent to you. If you post them here we can help you understand the results and tell if you had the necesary tests to rule out celiac disease.

This website will help you understand many of the problems caused by gluten.

Introduction - The Gluten Syndrome, GlutenSensitivity, Gluten ...

The Gluten Syndrome.net. top. Patient perspectives on gluten grain intolerances and sensitivities . including the celiac disease subset,

theglutensyndrome.net

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi raven. I have had the biopsies done they got one sample as I was intolerant to the procedure . That came back fine also I explain to them that I only had been on the challenge for less than two weeks before having that done and that I was on a very strict gluten-free diet for 10 months. Today she took a DNA test ?? and she is going an ESR test and a total IgA IgG as my IgA is 0.4 ( I think that is Iga deficient )

If you were gluten free for 10 months and only did a two week challenge chances are your tests are going to be negative whether you are celiac or not. Do not use the DNA test as a for sure that you are or are not celiac. Many times they only test for 2 of the associated genes and not the other 7 or possibly more that are also associated with celiac. How did your body react to the challenge? If you got a reoccurance of your symptoms on the challenge you should go back to the gluten free diet. If the diet helps your issues it is the thing to do no matter what the test results say.

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

Celiac.com Sponsor (A8-M):


Emilushka Contributor
Emilushka
Posted

I'm sorry the doc was mean to you. That really sucks.

I don't have new info to add, just wanted to add my support.

Dellers Apprentice
Dellers
Posted
  • Author

If you were gluten free for 10 months and only did a two week challenge chances are your tests are going to be negative whether you are celiac or not. Do not use the DNA test as a for sure that you are or are not celiac. Many times they only test for 2 of the associated genes and not the other 7 or possibly more that are also associated with celiac. How did your body react to the challenge? If you got a reoccurance of your symptoms on the challenge you should go back to the gluten free diet. If the diet helps your issues it is the thing to do no matter what the test results say.

On the challenge I was very sick with stomach cramps, loose watery fatty stools,mucus, Urgency, tasting sick in my mouth also very tired. I have had no communication from my doctors so I didn't know I had to eat gluten until I found this forum. Also my joint pain has returned in my hips and my hand is still getting the shakes. Being gluten-free has cleared all these symptoms up for me. It took a while but I am not eating imodium instants like there candy. I had more ESR tests done yesterday as my last ones were in the 80-90 range. This could have been down to pregnancy as it is not associated with celiac. The doctor was concerned in my family there is a history of bowel cancer. I recently had a aunt pass away aged 41 so I am being reffered for a coloscopy. after doing the challenge my hair has been falling out a lot more than usual.

Dellers Apprentice
Dellers
Posted
  • Author

I'm sorry the doc was mean to you. That really sucks.

I don't have new info to add, just wanted to add my support.

Thank you sometimes a hug and support is all we need. I have never met a Doctor so rude in my life. He said "If gluten is your problem so you say ! what do you want me to do about it to help you " and then had a go at my husband about gluten is in wheat in the bread so that would effect me also but my husband informed him that I have been eating glutafin bread. I didnt even listen to half of it I was sobbing so much :)

gf-soph Apprentice
gf-soph
Posted

Thank you sometimes a hug and support is all we need. I have never met a Doctor so rude in my life. He said "If gluten is your problem so you say ! what do you want me to do about it to help you " and then had a go at my husband about gluten is in wheat in the bread so that would effect me also but my husband informed him that I have been eating glutafin bread. I didnt even listen to half of it I was sobbing so much :)

I would seriously consider making a complaint with a dr like that. I think a lot of terrible drs get away with treating patients like dirt as sick people aren't likely to have the energy to complain. This dr is a jerk and he doesn't know what he's talking about.

If you hadn't done your own research you might believe him, and you would continue to be sick. I was unlucky enough to see a gastro who told me that with positive blood tests there was no way that gluten was my problem. I was sick for another year eating gluten before I found out the truth. I'm glad you know better, but how many of his other patients won't? Either way, I'm glad the experience is over and that you had someone to help you though it.

  • 2 weeks later...
Dellers Apprentice
Dellers
Posted
  • Author

Finally some good news I got a letter today and with my symptoms I have been reffered to a dietitian.

Archived

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

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


  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748
    maltawildcat
    Newest Member
    maltawildcat
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NanCel
      Celiac getting dentures

      By NanCel · Posted

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.