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Testing for Celiac without eating gluten again

MariePapp
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MariePapp Newbie
MariePapp
Posted

Hi, I have been gluten free for nearly 9 years.  I  had a blood test back then and it revealed I was gluten intolerant so I stopped eating gluten.  I want to know how can I find out if I have celiac WITHOUT eating gluten....that is just not an option for me as I will get too sick.  I imagine there MUST be some way to find out.

If you are wondering why I am concerned...well...If I really have celiac I need to be more vigilant about eating food that I don't prepare.  I have noticed there are times when I eat food that I have not cooked I can get a raging throbbing headache and my stomach can feel off.  I know if one has Celiac they need to be much more careful about what they eat vs someone who is gluten intolerant.  Would love to know your thoughts.  23andme said I have increased chance of celiac.

 

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GFinDC Veteran
GFinDC
Posted

Hi,

Currently there is no way to be tested without having eaten gluten.  Current celiac testing depends on detecting active antibodies to gliaden, a protein in wheat.  When we stop eating gluten those antibodies eventually decline and are not found in the bloodstream.

That is why we always suggest people get tested for celiac before going gluten-free.  It is possible to do a gluten challenge and be tested, but that can cause very unpleasant symptoms and damage to the body.

cyclinglady Grand Master
cyclinglady
Posted
(edited)

Well, you have a celiac gene.  So does about 35% of the population, but only a few actually have celiac disease.  

As of now, there is no test for celiac disease (blood or biopsies) that allows you to be on a gluten free diet.  You would have to do a gluten challenge.  Sorry.  

Do you have the results of your old blood test?  Not all people have the opportunity to have an endoscopy, and often they receive a diagnosis based on the blood test and improvement on the gluten-free diet, followed with a repeat blood test.  

While I am diagnosed, my hubby is not.  He went gluten free 12 years before my diagnosis.  Like you, he knows that gluten makes him sick and he is not willing to do a challenge.  However, he does not cheat (not after that first year).   He takes a few more risks than I do, but that is because he is out of commission for only  a week or so.  For me, it can be months and it activates my other autoimmune issues.  

Only you can decide what is best for you.  I wish you well.  

Edited by cyclinglady
MariePapp Newbie
MariePapp
Posted
  • Author
5 minutes ago, cyclinglady said:

Well, you have a celiac gene.  So does about 35% of the population, but only a few actually have celiac disease.  

As of now, there is no test for celiac disease (blood or biopsies) that allows you to be on a gluten free diet.  You would have to do a gluten challenge.  Sorry.  

Do you have the results of your old blood test?  Not all people have the opportunity to have an endoscopy, and often they receive a diagnosis based on the blood test and improvement on the gluten-free diet, followed with a repeat blood test.  

While I am diagnosed, my hubby is not.  He went gluten free 12 years before my diagnosis.  Like you, he knows that gluten makes him sick and he is not willing to do a challenge.  However, he does not cheat (not after that first year).   He takes a few more risks than I do, but that is because he is out of commission for only  a week or so.  For me, it can be months and it activates my other autoimmune issues.  

Only you can decide what is best for you.  I wish you well.  

What is a gluten challenge consist of?  I remember when I was first going gluten free...I ate 3/4 of a bagel and got so sick I threw up a ball of glue, head pain...felt like my body was gonna be ripped apart...seriously it was clear glue and I took me over a week to recover from that. 

cyclinglady Grand Master
cyclinglady
Posted

Here is information about a gluten challenge:

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Scott Adams Grand Master
Scott Adams
Posted

If you get that sick when you eat gluten I’m not sure why you’d want to do a gluten challenge. 

Ennis-TX Grand Master
Ennis-TX
Posted

You mentioned blood test, what kind of blood test and do you have a copy? It might have been one of the celiac blood test and if anything on it was high even just barely that is a postive. Most doctors are quite misinformed and ignorant about this disease, they also hate to diagnosis it as there is no money in it for them (docs get paid for every RX they write or shot they give via commissions normally)
On the challenge 12 weeks 1-2 slices of bread (seen some people just use vital wheat gluten by the spoon) is suggested but we have had some get by with a 8 week challenge. NOW is endoscope and biopsy is a 2 week gluten challenge

On the gene issues there are the main ones but also some off genes and snippets that are associated with it. I have one of the odd balls and I have seen a few others.

That said another thing, I have heard of gluten intolerant people being more sensitive then celiacs, I think a few old regulars here were like that and got deathly ill to the tiniest cross contamination.

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Audrey Jane Newbie
Audrey Jane
Posted

I feel the same. After a year of terrible psoriasis I took an allergen test which showed I was 100% intolerant to gluten. The doctor ignored this as it was an online one and said to stop eating gluten if I wanted but it was expensive. I did stop, the psoriasis disappeared over I and so did the cramping and explosive diarrhoea they told me was IBS. A couple of weeks later they did a blood test for celiac which came back negative but I was already on a gluten free diet? I think this was wrong but couldn’t possibly eat gluten for 12 weeks as I would be so ill?

GFinDC Veteran
GFinDC
Posted
5 hours ago, Audrey Jane said:

I feel the same. After a year of terrible psoriasis I took an allergen test which showed I was 100% intolerant to gluten. The doctor ignored this as it was an online one and said to stop eating gluten if I wanted but it was expensive. I did stop, the psoriasis disappeared over I and so did the cramping and explosive diarrhoea they told me was IBS. A couple of weeks later they did a blood test for celiac which came back negative but I was already on a gluten free diet? I think this was wrong but couldn’t possibly eat gluten for 12 weeks as I would be so ill?

Hi,

Yes, the celiac tests are not accurate if you are not eating gluten prior to the testing.  You need to be eating gluten daily for 12 weeks before the blood antibodies tests, and 2 weeks before the endoscopy test.

Celiac disease is not an allergy so it doesn't show up on allergy tests.  Allergies are caused by IgE antibodies and a histamine reaction.   Celiac disease is an IgA and / or IgG antibody response.  So testing for IgE antibodies doesn't tell anything about celiac disease.

There is a skin condition associated with celiac disease called DH (dermatitis herpetiformis).  DH causes an itchy rash that is usually symmetrical on the body.  Like both elbows, both knees etc.  They test for DH by taking a skin biopsy from near a blister.  If you have DH, you have celiac disease.

cyclinglady Grand Master
cyclinglady
Posted
(edited)
8 hours ago, Audrey Jane said:

I feel the same. After a year of terrible psoriasis I took an allergen test which showed I was 100% intolerant to gluten. The doctor ignored this as it was an online one and said to stop eating gluten if I wanted but it was expensive. I did stop, the psoriasis disappeared over I and so did the cramping and explosive diarrhoea they told me was IBS. A couple of weeks later they did a blood test for celiac which came back negative but I was already on a gluten free diet? I think this was wrong but couldn’t possibly eat gluten for 12 weeks as I would be so ill?

You could very well have celiac disease, or you might not.  But the amazing thing is that you felt better while on a gluten free diet.  Only you can decide if obtaining a celiac disease diagnosis is right for you.  

There is a diet called the Autoimmune Paleo Diet which is actually grain free, thus, gluten free.  It is a strict diet initially  that helps you to identify foods that could be triggering your autoimmune symptoms.  Consider looking into this diet. It might help reinforce your need to avoid certain foods like gluten.  

This website explains it well. But do your research.  You should not have to buy anything.  These ladies actually helped to fund a tiny study out of Scripps in San Diego.  Results revealed about a 78% remission rate in IBD patients.  That is amazing!  Food can heal!  

https://autoimmunewellness.com

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

Psoriasis is an autoimmune disease.  Even the psoriasis support organization suggests dietary changes could be helpful in some people.  Know that you can have more than one autoimmune disorder.  

https://www.psoriasis.org/research/science-of-psoriasis/immune-system

https://www.psoriasis.org/treating-psoriasis/complementary-and-alternative/diet-and-nutrition/anti-inflammatory-diet

I wish you well.  

Edited by cyclinglady

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