Gluten challenge diet after positive diagnosis

[Mikeymike93]

2yrs i was diagnosed with celiac though a blood test (very high transglutaimeigg and iga), even though my endoscopy showed retained villi and "focal intra-epithelial lymphocytosis as the only problem with the test. After 2yrs i have been gluten free, however many digestive symptons did not improve promoting my doctor to look further. Thinking I may have an intolerance etc instead, he suggested I go on a gluten challenge diet, see how I react and get retested. Maybe that the blood test was a false positive.

After 2 weeks on the test I can say I have reacted badly and dont really have any additional symptoms after 2 weeks eating gluten. Other than maybe some increased sinus problems, but it is winter as well. Most with celiac I hear have a "glutened" reaction or symptoms that show. It seems like I dont react like that and my digestive issues are not celiac related. At most maybe some symptoms similar to seasonal allergies. 

 

Question i have is....has anybody had this same experience?? based on the info I provided, is it very possible I dont have celiac and its more of a intolerance? Or is it quite common for celiac not to show any symptoms for a long time? And if not, what's the harm of having even a tiny bit of wheat in my diet once in a blue moon if I feel fine?

[Scott Adams]

The problem with trying to figure this out is that many celiacs have little or no symptoms at all, while others have extreme symptoms. I used to have severe symptoms before I went gluten-free, but if I get accidental gluten now my symptoms are not too bad. You really can't go by a gut test here. I used to have serious sinus issues for my entire life before I went gluten-free.

Do you have the actual results of your initial tests? I'm not sure why you would now doubt them, but if you have them please share them with us. If you have "very high" blood ttg it usually indicates celiac disease, and depending on the reading can be used alone to diagnose CD. 

A gluten challenge would mean you need to eat gluten daily for at least 6 weeks, then get a blood test and biopsy--if you wanted to get retested that is.

Be careful about wishful thinking here, as it could lead you back down an unhealthy path.

[Mikeymike93]

8 minutes ago, Scott Adams said:

The problem with trying to figure this out is that many celiacs have little or no symptoms at all, while others have extreme symptoms. I used to have severe symptoms before I went gluten-free, but if I get accidental gluten now my symptoms are not too bad. You really can't go by a gut test here. I used to have serious sinus issues for my entire life before I went gluten-free.

Do you have the actual results of your initial tests? I'm not sure why you would now doubt them, but if you have them please share them with us. If you have "very high" blood ttg it usually indicates celiac disease, and depending on the reading can be used alone to diagnose celiac disease. 

A gluten challenge would mean you need to eat gluten daily for at least 6 weeks, then get a blood test and biopsy--if you wanted to get retested that is.

Be careful about wishful thinking here, as it could lead you back down an unhealthy path.

I am doing the challenge based on my gastro doctor suggesting it. My initial blood test was very high but biopsy didn't show any damage. Doc says there is a chance it was a false positive so I decided to give it a try. I did the test gluten free and it was fine so I am now 3weeks into the challenge and will be redoing the blood test. That should tell us the story. I actually redid the biopsy a month ago without being on gluten bc my digestive symptoms were still present after 20mths gluten free so I wanted to do it without gluten so see what the issue is. I guess if I have no symptoms, whats the harm in having a little gluten once in blue moon as long as it stays that way?

[Scott Adams]

Well, if you did a biopsy on a gluten-free diet it won't tell you anything about you possibly having celiac disease. You need at least 6 weeks for blood tests. Here is some info on a gluten-free challenge:

 

[Mikeymike93]

Ya the biopsy was more to try to find another issue outside of celiac since my gut issues seem unrelated to celiac. Even my first biopsy after a positive blood test came back "no signs of celiac damage" 

[Scott Adams]

Yes, but if you had “very high” TTG and IGA, it can’t be ignored, and usually means celiac disease, or at the very least gluten sensitivity. Either of these conditions require a gluten-free diet.

[GFinDC]

The bodies immune system is very persistent.  Once it learns about an enemy and starts making antibodies it doesn't forget easily.  The immune system makes antibodies to destroy enemies that are in our bodies.  Things like germs, allergens, rogue cells etc.  If the immune system didn't have this memory we would probably all die from disease.  When you have anti-gliaden antibodies they are made for attacking gluten molecules.  If those gluten particles are on your gut they can destroy your gut lining also.

Here's an older thread on cheating on the gluten-free diet and what can results.  There is a post by user Backtalk on the 2nd page that explains.  Otherwise the thread is kind of interesting in that it explores the angst that new gluten-free dieters can experience.