Doing a Gluten diet after positive celiac test

[Mikeymike93]

I tested positive for celiac through a high IGG and IGA transglutaime blood test about 18mths ago. However my upper scope biopsy didn't show celiac. I have been gluten free for 18mths since without cheating. My doctor recommended I try to go back on a gluten diet for a month and try the blood test again to double check. Question is....do people with celiac almost always show symptoms after eating gluten, at least within a few days? Or could I go back to gluten for a month and not notice a difference but still have celiac??? The doctor believes there is a chance the blood test was a false positive since the biopsy was inconclusive. Thoughts? I have heard most get a mild to severe reaction fairly soon after eating. 

[GFinDC]

Hi MM,

Most people who had GI symptoms to start with and go gluten-free and then do a gluten challenge will have more severe GI symptoms after restarting gluten IMHO.  But if a person didn't have GI symptoms to start with they may or may not get them when starting up a gluten containing diet again.

Personally I get some symptoms within an hour from gluten exposure.  But others may not notice symptoms for several days.  We are not all the same.

[Mikeymike93]

Thanks. 

6 minutes ago, GFinDC said:

Hi MM,

Most people who had GI symptoms to start with and go gluten-free and then do a gluten challenge will have more severe GI symptoms after restarting gluten IMHO.  But if a person didn't have GI symptoms to start with they may or may not get them when starting up a gluten containing diet again.

Personally I get some symptoms within an hour from gluten exposure.  But others may not notice symptoms for several days.  We are not all the same.

Thanks. I started the gluten challenge 6days ago with a tiny bit of bread initially and now up to 1 full slice today. I haven't seen any big reactions and I thought most would feel a mid-severe attack within a day. My digestive issues definitely weren't celiac bc they never went away in 18mths i stop eating gluten but I had swollen lymph nodes, fatigue and itchiness before I went gluten free so thats what I am waiting to see if it comes back but not sure how long it takes. So tough to judge bc I didnt get symptoms right away. 

[GFinDC]

Hi MM,

Itchyness eh?  DH is a skin rash that some people with celiac disease get.  People with DH (dermatitis herpetiformis) sometimes report mild or non-existent GI issues at first.  It seems the antibodies attack the skin instead of the gut. They test for DH by taking a skin biopsy from next to a lesion.  If the skin biopsy shows IgA antibodies then it's DH.

GI symptoms may not go away completely in 18 months.  It can take 2 years to recover for some people, or longer.  So it's tricky to diagnose celiac just by symptoms.  The symptoms can vary widely among people.

You could have a different GI condition of course.  But if symptoms do return or worsen when eating gluten, that should mean that gluten is causing a problem of some sort.  It might be a good idea to write down how you are feeling each day and any change in symptoms.  Your doctor may want to review your notes.

Edited December 19, 2020 by GFinDC

[Mikeymike93]

Thanks. Ya i guess i will try to co tinue with the gluten diet for a month and if i feel terrible or get breakouts again i will stop and just assume celiac. If not i will just do the blood test after 30days and if it comes back really positive like before, I will again assume celiac. Only way out I guess is no major symptoms and a clear blood test. 

[Inkapathic]

Everyone is different. Some may develop symptoms immediately, others take longer, some don't at all. You may not be able to know until you try it.

I'm not sure about the gluten challenge suggested by your doctor (going back to a gluten-containing diet after going gluten-free is called a gluten challenge). Most sources recommend a 6–12 week challenge for blood tests and a minimum of 2 weeks for an endoscopy. This is because your body takes a while to (re)start producing the antibodies we're looking for, even if symptoms reappear quickly.

"Within 3 months of gluten challenge, 70%–100% of pediatric celiac disease patients became positive for AGA-IgA and EMA-IgA antibodies and 50%–70% for AGA-IgG. A limited number of trials suggest that no more than half of adult patients developed positive AGA-IgA, EMA-IgA, tTG-IgA or DGP-IgA/IgG titers."

(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3847752/)

The probability of a false negative is even higher when one has gone gluten free for a long time before the gluten challenge, which appears to be the case for you with 18 months gluten free.

There's also something called potential celiac disease, where antibodies are high but biopsy is negative. These cases usually do develop into full celiac disease if left untreated.

[Mikeymike93]

Wow, seems like there are so many different reasons why somebody may be or may be not celiac.  

[GFinDC]

11 hours ago, Mikeymike93 said:

Thanks. Ya i guess i will try to continue with the gluten diet for a month and if i feel terrible or get breakouts again i will stop and just assume celiac. If not i will just do the blood test after 30days and if it comes back really positive like before, I will again assume celiac. Only way out I guess is no major symptoms and a clear blood test. 

Hi MM,

If you are talking about DH breakouts, I urge you to review the information in the DH section of the forum.  DH is hard to control and really not fun if it gets going strong.  And it's vey sensitive to gluten once the antibodies build up in the skin layer.  It can take 6 months or more for the itching to subside on a very restricted gluten-free diet.  So you want to avoid that if possible.

The other reason to review DH info is that the diagnosis for DH is different than the diagnosis steps for regular celiac disease.  People with DH are better diagnosed by a dermatologist rather than a GI.  The dermatologist deals with skin conditions and is able to do the skin biopsy needed.  An endoscopy is not needed with a positive skin biopsy.  A dermatologist is the right specialist for diagnosing the DH version of celiac disease.