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):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

  • 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):
NutHouse! Granola Co.
Daura Damm

Celiac.com Sponsor (A8-M):
Little Northern Bakehouse

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):
Tierra Farm
Food for Life

Celiac.com Sponsor (A8-M):
Food for Life

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):
    Food for Life


  • Member Statistics

    • Total Members
      129,898
    • Most Online (within 30 mins)
      7,748
    ThelmaRose92
    Newest Member
    ThelmaRose92
    Joined
  • Celiac.com Sponsor (A20):
    NutHouse! Granola Co.

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Food for Life


  • Upcoming Events

  • Posts

    • knitty kitty
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By knitty kitty · Posted

      @Alibu, There may not be textbook intestinal damage in the early stage of Celiac Disease!!! Keep in mind that the endoscope used can only reach about a foot past the stomach, while the small intestines are twenty-two feet long!  Damage can be patchy or out of reach of the scope.  Early celiac disease may not show damage at all. Don't compare your tTg IgA numbers with others.  Every lab uses their own range values.  Tests from different labs are not using the same scale and shouldn't be compared with other people's numbers from a different lab.   You've got the Celiac genes and the positive antibody test and the EMA test.  Next step is a Gluten Free diet trial and look for improvement.  Celiac Disease can be diagnosed using genetic testing and response to a gluten free diet!  I'm seronegative, but DQ 2.5.  My doctors were clueless.  They didn't see any classic textbook damage, so didn't bother to biopsy.  Ack!    This study followed people who showed no or little damage at first....they accrued more damage. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/ Welcome to the tribe!
    • JulieB11
      Gluten-Free Drinks

      By JulieB11 · Posted

      I was introduced to a new-to-me alcoholic beverage yesterday, a grapefruit radler. The bartender said it was sugar- and gluten-free and I trusted him. After I ordered a second drink, I had the good sense to look it up: it’s half beer! Usually wheat beer. BUT it gave me no symptoms—no bloating, fatigue, stool issues. Anyone else have this experience?
    • Capt Jules
      Quaker Instant Grits, gluten-free?

      By Capt Jules · Posted

      are these gluten free, I know that they don't devote space and there could be cross contamination but can they be eaten by celiac person?  
    • trents
      Virus, celiac disease or both?

      By trents · Posted

      knitty kitty brought up something that also occurred to me. Namely, the reason you don't like bread and pasta may be that your body has been instinctively telling you, "this is harming me" and so you avoid it. Cake, on the other hand, has less gluten and lots of other goodies like sugar and butter and chocolate that mask what gluten there is.
    • knitty kitty
      Virus, celiac disease or both?

      By knitty kitty · Posted

      @Shining My Light, While you're trying to decide on your next steps on your journey, I suggest you have a DNA test to look for Celiac genes.  Your genes don't change, so you do not have to be eating gluten for it.  If you have even one Celiac gene, it's more likely to be celiac disease, than NCGS.  TTg antibodies do not occur in NCGS.   There are different amounts of gluten in different breeds of wheat.  Wheat used for cookies and cakes and tortillas do not contain as much gluten as wheat used for bread and pizza crust.  Look at the crumb in cakes and tortillas.  There's only small bubbles. Gluten is in the matrix forming those bubbles.  Compare those to the big bubbly holes in artisan bread and chewy pizza crust.  To get those big holes, more stretchy elastic gluten is used.   You are subconsciously avoiding those types of foods with large amounts of serious gluten in them.  Consider including these types of high gluten foods in your gluten challenge before your antibody retest and endoscopy.  Keep a food mood poo'd journal to record how symptoms change.   Anxiety, headaches and joint pain are symptoms of Celiac that occur outside the digestive tract, these are extraintestinal symptoms of celiac disease. "Could I really possibly follow a gluten free life as close as I follow Jesus?"    Yes, He's been my constant companion and guide on this journey which has brought us to the forum so we can help others on their journeys.   References: Celiac Disease: Extraintestinal Manifestations and Associated Conditions https://pmc.ncbi.nlm.nih.gov/articles/PMC6895422/ Psychiatric and Neurological Manifestations of Celiac Disease in Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC9984242/#:~:text=celiac disease%2C a multiorgan disorder with,life [21%2C22].
×
×
  • Create New...