Eaten Gluten Twice With No Obvious Reaction?

[Jamie1450]

My now 3 year old son was diagnosed with Celiac Disease at 18 months after having problems maintaining his weight. I actually asked his pediatrician to run the blood test on him after reading all the symptoms on line. All his levels were normal except his TTG was was point over normal. Anything 4 and over was considered abnormal per the test and his was 5. Because he was only a year old we decided not to do the biopsy and just went gluten free. Since going gluten free he has grown right on track but he also stopped being such a picky eater. He's had some loose stools here and there and we thought he was being glutenized but he's been fine in that department for a while now. Then 2 days ago he ate half of a regular gluten filled hamburger bun. No obvious reaction what so ever. This has now happened 2 in the last couple of months. Ate something with gluten and did not have a reaction. I don't know what to think. 

[nvsmom]

People don't always react, and by that I meant that they are showing no noticeable symptoms. You can be sure that an autoimmune reaction has begun in his body, but it might not manifest with regular symptoms.

 

Some people have symptoms that seem to have nothing to do with gut issues. My 12 year old cousin was diagnosed after he had cognitive issues.  Others get headaches, more tired, anxiety, joint pain, or their hair thins.  He could be having symptoms but not ones that he has had in the past or ones that you would recognize. Slowed growth would take a while to show itself.  

 

Also, many of us find that we feel worse after repeated glutenings. I know this is true of me.  Perhaps his symptoms will not show up yet, but that does not mean he is not having an autoimmune reaction.

 

I suppose there is a chance that his tTG was a false positive, but it is very unlikely. The tTG IgA is about 95% specific to celiac disease so 95 out of 100 positive tests are due to celiac disease.  The other positives are caused by something else - the tTG IgA should not be elevated for no reason at all. If it is not celiac disease, he should be checked for thyroiditis, diabetes, colitis, crohn's, chronic liver disease or a serious infection.... but my guess is that it is celiac disease since his symptoms have improved after going gluten-free and he had a positive celiac disease test.

 

Best wishes. I hope he stays out of the gluten.  

[kareng]

Perhaps he doesn't have Celiac disease?  He only had 1 test very slightly over normal, so there is no way to really know without a endoscopy while eating gluten.  

 

Here are a couple of things.  There is more info on the U of C site about slightly elevated TTGs not necessarily pointing to Celiac.  

 

Open Original Shared Link

 

How does one rule out other possible causes of the positive tTG blood test?

We rule out other causes of elevated tTG by evaluating the other known possible causes, such as liver diseases or the concomitant presence of other autoimmune disorders.

 

Open Original Shared Link

Can you confirm celiac disease from only a blood test?

Never, in fact. Other variables must be part of a diagnosis. New guidelines in 2011 allow for diagnosis without a biopsy, but only in very rare cases. In these rare cases at least one of the genes must be present, both tTG and EMA blood tests must be more than 10x normal, and there must be a positive response to a gluten-free diet.

Because the above cases are so rare, the gold standard for diagnosis is still an endoscopic biopsy of the small intestine.

[luvs2eat]

I was diagnosed with just a blood test. I had an endoscopy years later which confirmed celiac but my gastro MD said the blood levels I had were some of the highest he'd ever seen. I went gluten-free the next day. THEN... a few months later, I scarfed down a huge thick slice of homemade bread (w/ gluten) and had NO reaction whatsoever. Holy cow... I spent days thinking about all the cool things I could "cheat" with... maybe once a month or something like that. I didn't do it. Fast forward several years and an accidental glutening produced some not-so-nice symptoms. The last accidental glutening was so horrible I'll never forget it!

[LauraTX]

Not all people with celiac disease get the breakthrough diarrhea and glutening symptoms.  Some people don't develop them until long after they heal, and others like me have no conclusive reaction, or mixed reactions.  

 

Because the entire diagnostic process wasn't completed, it may be something that can be re visited in the future to verify the diagnosis of Celiac disease is correct.  Of course, if you didn't want to put him through an endoscopy then, you may not want to do it with a gluten challenge now.  Maybe by the time he is in his twenties, there will be some more advances in medical science that will make diagnosis easier.

[Fenrir]

I have been glutened a few times since I was DX'd, one time I got diarrhea the other time nothing and the one that I didn't have a reaction to had a lot more gluten in it.