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Confused

shialyn

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shialyn Newbie
shialyn
Posted

I'm confused right now, after doing research on the internet and Dr telling me I have a gluten allergy. last night I had someone on here tell me there is no such thing has a gluten allergy. I'm waiting when test results for celiacs disease. but if I don't have celiacs disease and there is no such thing as a gluten allergy. what in the world is wrong with me? it has to be something with gluten because when I don't eat gluten I feel better. can someone please explain this to me, because I am so confused right now. Thank u.... I'm sorry I feel dumb asking. But I have dealt with this all my life and I finally see a light at the end of the tunnel. I hope....

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StephanieL Enthusiast
StephanieL
Posted

There are things it could be that aren't an allergy or Celiac disease.  There is something called "Non Celiac gluten sensitivity" that many people believe is the issue for themselves.  It is when you have issues caused by gluten containing foods but the Celiac bloodwork and endoscopy say it isn't caused by the autoimmune disease.  

 

There are also people allergic to wheat (or rye or barley) but those aren't general symptoms, they are very pronounced and would give Dr's a pretty cut and dry diagnosis.  From what you said in your other thread, it isn't an actual IgE mediated allergy either. 

michelley65 Rookie
michelley65
Posted

I'm confused right now, after doing research on the internet and Dr telling me I have a gluten allergy. last night I had someone on here tell me there is no such thing has a gluten allergy. I'm waiting when test results for celiacs disease. but if I don't have celiacs disease and there is no such thing as a gluten allergy. what in the world is wrong with me? it has to be something with gluten because when I don't eat gluten I feel better. can someone please explain this to me, because I am so confused right now. Thank u.... I'm sorry I feel dumb asking. But I have dealt with this all my life and I finally see a light at the end of the tunnel. I hope....

I believe a gluten allergy is Celiac,where a gluten sensitivity is not.This is what I belive is wrong with me,and will be tested again next month.

shialyn Newbie
shialyn
Posted
  • Author

Test results are in and it's not celiac disease. Now I went 3 weeks gluten free and eat gluten 4 days before test doctor said it was fine. I could cry right now, maybe I'm just crazy and it's in my head.

shialyn Newbie
shialyn
Posted
  • Author

And I forgot doctor wants me to stay on gluten free diet but wants me to go see a gi. I thought you need to be eating gluten to see a gi.

StephanieL Enthusiast
StephanieL
Posted

I believe a gluten allergy is Celiac,where a gluten sensitivity is not.This is what I belive is wrong with me,and will be tested again next month.

 

 

No.   There is no such thing as an gluten allergy.  There is the autoimmune condition of Celiac disease.  It is NOT an allergy.  And allergy is an immediate (within 2 hours of ingestion) condition causing things like vomiting, hives, diarrhea, breathing issues, constricting of airways.  As I said, there are many people here who do not test positive for Celiac but for whom the gluten free diet alleviates many of the issues they have.  Don't lose hope.  You aren't crazy!  Hang in there!

 

 

Shialyn,  I would try and stay on gluten until you see the GI Dr.  They are the better ones to determine if you need any more testing and that testing is best done when you are consuming gluten to be sure all the necessary blood work has been taken when on the gluten containing diet.  

cyclinglady Grand Master
cyclinglady
Posted

Many doctors make mistakes.  It is up to you to be your best health advocate (hard to do when you are feeling sick, I know  :( !)   Ask for copies of the celiac blood test panel.  You have a right to your medical records.  If you were off gluten, even for a month, that can impact the test results (University of Chicago Celiac Website).  Read these links and check out the rest of the University of Chicago's website about symptoms and testing.  

 

Stephanie is right.  Keep eating gluten until you see the GI doctor!  

 

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shialyn Newbie
shialyn
Posted
  • Author

Tissue Transglutaminase AB, Iga1 U/mL2Immunoglobulin A284 mg/dL81-463Laboratory test finding04/24/2015Clinical PDF Report Ne318731f-1SEE IMAGE

Note:

No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet.Consider HLA DQ2 and DQ8 testing to rule out celiac disease. Celiac disease is extremely rare in the absence of DQ2 or DQ8.2Value Interpretation ----- -------------- <4 No Antibody Detected > or = 4 Antibody Detected

kareng Grand Master
kareng
Posted

Some of the confusion may be that sometimes we say we have an allergy. It helps people & restaurants understand the fact that a Celiac cannot have even a crumb of gluten. But there really is no " gluten allergy".

If it is not Celiac, you might want to check out FODMAPS. Wheat is a high FODMAPS food so being gluten-free can relieve a lot of the symptoms

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cyclinglady Grand Master
cyclinglady
Posted

Did you read the links? It looks like you only had ONE of the celiac antibody tests. The one you took was also given to me (TTG) and my result was negative like your result. I had Celiac disease which showed positve on a different celiac test (plus, my biopsies supported a celiac disease diagnosis.). I think you need the complete celiac test, plus, you need to be on gluten for 12 weeks before re-testing.

CurrantCottage Rookie
CurrantCottage
Posted

Hi, I'm new and its encouraging to read this post and the replies! I've had digestive issues for years and also struggle with asthma and eczema and low iron blood stores.  The doctor thought I was celiac but the test came back negative and so did a test for a wheat allergy.  I must confess the doctor hasnt been at all helpful over the years and I can just feel her groaning when I go in and mention my symptoms and this time she said she'd do the wheat allergy test (I do get hives occasionally) but no more testing as it cost the NHS £50 everytime they test for an allergy.  I went home and cried, I felt so ashamed for wasting their time and money!  I have got myself an Nutritionist who reckons I'm gluten intolerant but also talks about leaky gut and adrenal fatigue but doctors apparently dont believe this exists.  I'm just plain confused and fed up !  I've been gluten free for three weeks and feel a lot better - I'm wondering whether to add gluten back in at some point and see if I get a reaction - and if I do to keep eating gluten and go to see a different doctor and try and get some more tests.

 

Ali

shialyn Newbie
shialyn
Posted
  • Author

12 weeks omg!!!!

cyclinglady Grand Master
cyclinglady
Posted

I know, it sounds like forever, but it's not.  Geez, most of us have taken more than 10 years to get a diagnosis of celiac disease.  You are lucky to have found this forum and smart enough to pursue a diagnosis.  Whether you have celiac disease or not, something is wrong and you know it!  Do not let doctors tell you that it is all in your head!  

 

Of course, you can always go gluten free.  There's nothing stopping you.  But I must caution you that my husband did this 14 years ago per the advice of his GP and my allergist.  He's doing great!  But he'd be the first to tell you that I have received way more support from family, friends and medical staff.  Plus, it's easy to get my daughter tested periodically with or without symptoms.  

 

You do have some options.  Just take a breath, a nap or sleep on it.  You'll make the right decision for you!  :)

cyclinglady Grand Master
cyclinglady
Posted

Hi, I'm new and its encouraging to read this post and the replies! I've had digestive issues for years and also struggle with asthma and eczema and low iron blood stores.  The doctor thought I was celiac but the test came back negative and so did a test for a wheat allergy.  I must confess the doctor hasnt been at all helpful over the years and I can just feel her groaning when I go in and mention my symptoms and this time she said she'd do the wheat allergy test (I do get hives occasionally) but no more testing as it cost the NHS £50 everytime they test for an allergy.  I went home and cried, I felt so ashamed for wasting their time and money!  I have got myself an Nutritionist who reckons I'm gluten intolerant but also talks about leaky gut and adrenal fatigue but doctors apparently dont believe this exists.  I'm just plain confused and fed up !  I've been gluten free for three weeks and feel a lot better - I'm wondering whether to add gluten back in at some point and see if I get a reaction - and if I do to keep eating gluten and go to see a different doctor and try and get some more tests.

 

Ali

Welcome Currant!  

shialyn Newbie
shialyn
Posted
  • Author

Ali I did that and for 4 day I ate gluten and I was so sick. Longest 4 days of my life. I went to work, came home and went to bed every night. I was tired, in pain and I thought I was dieing.

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