celiac results after 6 weeks gluten challenge negative

[Mat82]

Hi guys i just got the test done for celiac disease, i was gluten free for 6 months, ate the equivalent of 4 pieces of bread each day for 6 weeks as recommend by coeliac australia and got the test. 

Quote

If gluten has been removed from the diet, a normal diet must be resumed for at least six weeks prior to testing. During this ‘gluten challenge’, a minimum of four slices of wheat based bread (or equivalent) should be consumed each day (for adults) (two slices of wheat based bread each day for children). It is important the gluten challenge is carried out properly to ensure reliable test results.

  the results came back negative which i guess is good but its annoying as i dont know if its a false negative or im just non celiac gluten sensitive. im not sure where to go from here, do i keep eating gluten and feeling like rubbish on the chance i have celiac or do i just go with non celiac and call it a day. Here are my results, i dont know if theres anything that might hint at something or not? 

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[Mat82]

IMG_20171103_172056.pdf

IMG_20171103_172121.pdf

[Mat82]

IMG_20171103_172157.pdf

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[Mat82]

IMG_20171103_172258.pdf

[Gluten-free-01]

I can relate.

Tbh I wouldn’t rely on the blood tests results for the following reasons:

1. approx. 10 percent of celiacs are seronegative

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2. opinions vary as to how long a gluten challenge should last – as you said, according to Coeliac Australia, it’s 6 weeks, but e.g. University of Chicago – Celiac Disease Center recommend 12 weeks.

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3. I personally don’t think the blood tests are good enough to be able to catch celiacs whose intestinal damage is not that severe (Marsh grade 1 or 2).

'It is important to keep in mind that tTG antibody levels fluctuate and depend on the degree of intestinal damage. Thus, a negative test is possible in a patient with minimal pathology (ie, Marsh I lesion) and does not necessarily rule out milder forms of celiac disease. Repeat testing may provide significant clinical insight and help decide the appropriate timing for a biopsy or monitoring dietary compliance.'

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Also, this thread came to my mind. I hope Celiac’s Wifey won’t mind if I quote her.

'Asking because my kids are at risk. Half my husbands family are biopsy-confirmed celiacs - but most with weird paths to diagnosis - he was confirmed through DH skin biopsy / his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage. Curious if there is a tie between genetic types. They haven't all been gene typed but we know my husband is DQ7'

So my advice would be don’t rely on the blood tests and stay gluten-free. In my opinion, improvement in symptoms on the gluten-free diet is a proof in itself.

PS: I couldn't open the attachments unfortunately.    

[Jmg]

G'day Matt!

Sadly I can't open the attachments either. My guess is that a mod may be able to. I think you could upload them to a filesharing site and post a link here though? 

In your first thread I posted the main tests, try to have a look and see if you can recognise them on your test and maybe manually type the 

I tested negative on blood and scope, but my reactions during the challenge were enough to confirm I had a major issue with gluten and the consultant told me to lay off it for life, which is exactly what he'd have said if the test were positive. 

So review what happened during the test, how your body is on and off gluten and see if you want to pursue further testing, in which case stay on gluten and see your doctor about pushing for a scope regardless, or exclude gluten and get on with feeling better. 

Did you keep a diary at all during the challenge?

Matt

[Mat82]

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[Jmg]

Thanks Matt I can see those no problem

I will retype the celiac results to make it easier for you and others. These are the main tests in use:

Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Your total IGA is fine 2.65 (range .4 to 3.5)

TTG IGA is less than 1 with any result less than 15 considered negative on this test.

DGP IGG is less than 1  again with any result less than 15 considered negative on this test.

I don't see a result for DGP IGA, someone else may, otherwise this may be one they've not chosen to do. Different labs make different decisions. I never had my DGP levels checked at all and often wonder if that would've given a positive celiac result. 

So I was right where you are a few years ago. Utterly confounded by a negative result when I was convinced it would be positive. No-one wants to be told they have a serious medical condition, unless they're suffering from symptoms that would be explained by said diagnosis. I know just what it feels like to get a negative result after you're certain you've finally found an answer. 

In my case they went ahead with an endoscopy even without a positive blood test due to the way I'd reacted to being gluten free. So discuss this with your doctor, they may take the same approach and if so you need to decide whether to stay on gluten and do further testing.

Or, you can decide whether or not to permanently exclude gluten. Given what you've said about how it affects you that would be my suggestion. Ultimately there's not a lot doctors can do for you positive or negative. But that's a decision to take after some thought.

Best of luck as always

Matt

 

 

[Mat82]

thanks guys. i didnt know about the seronegative celiac. i dont understand why a blood test is even used when there is such high risks of it coming back as a false negative, is it because a biopsy costs so much in other countries?

I didnt keep a diary but my symptoms when on gluten are

itchy head

itchy bottom

sinus

anxiety

autistic traits

depression

brain fog

pain on left side of stomach varying from bearable to quiet uncomfortable

burning sensation in stomach

 fatigue

irregular bowel movements

bloating and putting on weight around the stomach

hair loss

i think ill just go back to being gluten free, i might get the gene test done and just go with what that says. i dont think its worth all the pain and suffering to get an answer that might not even be correct. i guess i was just hoping to find some definitive answers to what is going on in my body, but i might just have to accept that i may never really know 

thanks again. you are all very helpful 

 

[Jmg]

21 minutes ago, Mat82 said:

i dont understand why a blood test is even used when there is such high risks of it coming back as a false negative, is it because a biopsy costs so much in other countries?

A biopsy is a much more intensive and invasive procedure. You need a way of working out who needs one and though not perfect the Open Original Shared Linkat diagnosing celiacs. 

24 minutes ago, Mat82 said:

i think ill just go back to being gluten free, i might get the gene test done and just go with what that says. i dont think its worth all the pain and suffering to get an answer that might not even be correct. i guess i was just hoping to find some definitive answers to what is going on in my body, but i might just have to accept that i may never really know 

I think that's a good plan. 

I share pretty much all your symptoms. Theyve all resolved or imroved on the diet.

As for a diagnosis. If you test negative but respond to gluten-free diet you're NCGS learn more about that here:

 

[Gluten-free-01]

1 hour ago, Mat82 said:

itchy head

itchy bottom

Have you ruled out Dermatitis Herpetiformis? 

'Dermatitis herpetiformis is an itchy, blistering skin disease that stems from intestinal gluten intolerance. The rash usually occurs on the elbows, knees, torso, scalp and buttocks.

Dermatitis herpetiformis is often associated with changes to the lining of the small intestine identical to those of celiac disease, but the disease may not produce noticeable digestive symptoms.

Doctors treat dermatitis herpetiformis with a gluten-free diet or medication, or both, to control the rash.'

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'Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that’s a form of celiac disease. The rash usually occurs on the elbows, knees and/or buttocks, and is characterized by its bilateral nature; both knees (and/or both arms) are affected, seldom just one. Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. Unless otherwise specified, the information pertaining to celiac disease also pertains to people with DH. In addition to following a strict gluten free diet, DH is also commonly treated with a medication called Dapsone.'

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1 hour ago, Mat82 said:

thanks again. you are all very helpful 

You're welcome  I know that living with the uncertainty can be difficult - I'm in a similar situation..

1 hour ago, Mat82 said:

i think ill just go back to being gluten free, i might get the gene test done and just go with what that says. i dont think its worth all the pain and suffering to get an answer that might not even be correct.

That's a good decision. 

[Feeneyja]

I just want to chime in with another negative blood and biopsy experience but clearly gluten hurts my body.  It has taken me months to feel better after my gluten challenge.  

I was just glutened for Halloween (either one of my kids got me or my in-laws crumb laden home where we spent the evening).  Both me and one of my daughters are gluten intolerant and both of us have been sick from Halloween (neither of us ate anything). Both of us had negative biopsy and blood work. It affects us slightly differently. Both have stomach issues (bloat, gas, pain, gurgling, change in BM), both of us have fatigue and headache, but she has nerve and joint pain, I have nausea, dizziness, hair loss, and terrible mouth and nose sores. So clearly NCGS is a real thing and not as benign as some doctors would suggest. I just think they don't have enough research results on it to properly quantify and qualify the damage being done. 

I haven't bothered with the genetic testing because it doesn't change anything for me. Even if I'm HLA DQ 2/8 negative, I still can't eat gluten. The physical results are clear and what I'm going by.  

Good luck with your healing post gluten challenge. It can be a long road. Sometimes you need to give up other foods to assist in the healing process.  I ended up following the Paleo AIP diet to finally start to feel better. I expect to be able to reintroduce some of the restricted foods once I'm further along in the healing process.  Be kind to yourself, take it easy. 

[cyclinglady]

Is it possible to get the the DGP IgA?  It is the only positive I received, even in follow-up testing; however, I was very iron deficient, so that helped support my diagnosis (besides biopsies).  

I do not know if this will help, but my niece tested negative (she did have the complete panel).  She also had the endoscopy (colonoscopy thrown in too)  as well in case she was seronegative.  All results were negative.  Her 4th GI ordered a pill camera and found Crohn’s well beyond the reach of both scopes.  

Not saying you have Crohn’s, but keep advocating for your health.  If the gluten-free diet helps, do it.  My own hubby has been gluten-free per the poor advice of two medical doctors for 17 years.  More than a decade prior to my diagnosis.  It is one reason I had the biopsies because I was shocked that I would have a gluten issue too.  There is no way my hubby will do a challenge, we know gluten makes him sick.  We can not afford for him to miss work.  Does he have celiac disease or NCGI?  Who knows?  

You just need to determine what is best for you.  Feeling good is the goal!