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Jasminem

Gluten intolerant or Celiac?

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So I'm definitely gluten intolerant. Unfortunately it took me two years to come to that conclusion and I came to it by removing gluten from my diet and feeling instantly better (this was about the 10th thing the doctor had me try).

But now I'm left wondering if I'm Celiac or just allergic to gluten. Is there anyway to tell WITHOUT taking the test? I really can't imagine going through the pain of eating gluten again just to take a test, and I remember my doctor mentioning how pricey it is and that it's not even always accurate.

I know I should just avoid gluten regardless but I'd really like to know if it's Celiac that way I can be extra careful so as to not hurt my body. I also want to know for my future kids etc. 

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1 hour ago, Jasminem said:

So I'm definitely gluten intolerant. Unfortunately it took me two years to come to that conclusion and I came to it by removing gluten from my diet and feeling instantly better (this was about the 10th thing the doctor had me try).

But now I'm left wondering if I'm Celiac or just allergic to gluten. Is there anyway to tell WITHOUT taking the test? I really can't imagine going through the pain of eating gluten again just to take a test, and I remember my doctor mentioning how pricey it is and that it's not even always accurate.

I know I should just avoid gluten regardless but I'd really like to know if it's Celiac that way I can be extra careful so as to not hurt my body. I also want to know for my future kids etc. 

No, here is no way to test for celiac disease without being on a Daily diet (8 to 12 weeks for the blood panel)  filled with gluten.  I understand where you are at.  My hubby is not officially diagnosed.  He has been gluten-free for 15 years and there is no way he will do a challenge.  He will say that I have received way more support with my official diagnosis. 

http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/

Your doctor is wrong.  You can get tested and it is not cost prohibitive.  The full panel is less than $400 US dollars.  That's less than an iPhone.  

I wish you well.  

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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You could take the genetic testing to see if you carry the celiac gene first.   If you don't carry the celiac gene, then you can not have celiac disease.   If you do carry the gene, it still does not confirm that you have celiac, but then it might make more sense to consider doing the gluten challenge for the endoscopy to see if you have celiac disease.  

The endoscopy is covered by insurance if your doctor orders it.

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In the US only two of the celiac associated genes are looked for and there is research showing that they are not the only ones. The gene I carry two copies of are an example of that. While not common DQ9 has also been shown to be associated but doctors do not usually look for it. While helpful , please do not rely solely on gene testing to rule celiac in or out.

It is too bad your doctor didn't have you tested with the celiac panel before telling you to start the diet.  You really need to get back on gluten and at least get the blood work done and then possibly the endoscopy.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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