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
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    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

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.