So Clueless

[MsJ]

I've been on a gluten free diet for about a month now. There have been a couple of mistakes made, I freely admit. I've been seeing some slight improvement in my D, which is really the main thing I was interested in clearing up. (I also have rosacea, fatigue, acne, Hoshimoto's). The past few days, I've only been going to the bathroom 2-3 times a day and things have...firmed up a bit.

Yesterday, my DH brought home Vietnamese Pho for lunch. He checked with the owner of the place to make sure the noodles in the soup and rice paper on the spring rolls was gluten free. 45 minutes after eating, I had diarrhea. (a one time event) Had a head smacking realization that the peanut dipping sauce for the spring rolls contains soy sauce. (Like I said, mistakes are being made)

For dinner last night I had a salad and I used salad dressing with soy sauce and threw extra wheat containing soy sauce on top for good measure. I wanted to be able to say, "Aha! - I am gluten intolerant!". But of course nothing happened.

I'm sticking gluten-free for now but I'm tempted to eat a big fat gluten filled something if I can ever get 2-3 days in a row with somewhat normal bathroom habits. I just want to KNOW.

[MitziG]

Even dx celiacs can have very hit and miss reactions especially in the beginning. Mine were so random I never would have connected it to gluten, had it not been for the biopsy and blood work that said otherwise. I could eat a donut and sandwich one day and be fine- the next day pancakes might send me running to the bathroom! No clue why it works that way, but it is pretty common.

The longer you are gluten-free, you will likely have more concrete "proof" that gluten is not your friend!

[nora-n]

yes, sometimes we react, sometimes not.

I think it might have something to do with the freshly activated T cells, meaning that when you are gluten free, and eat some gluten, the body makes something called freshly activated T cells. Only celiacs make them.

They ahve devised this new test for celiac based on that, even.

Now the next day or so there are none left so you do not react like that....

[pricklypear1971]

yes, sometimes we react, sometimes not.

I think it might have something to do with the freshly activated T cells, meaning that when you are gluten free, and eat some gluten, the body makes something called freshly activated T cells. Only celiacs make them.

They ahve devised this new test for celiac based on that, even.

Now the next day or so there are none left so you do not react like that....

Really? So is this going to be a new test?

[squirmingitch]

Really? So is this going to be a new test?

Yes, Nora, can you provide the text or link for us please?

[nora-n]

They have done trials several places in the world for several years now, and the Haukeland hospital in Bergen in Norway is already using this test.

Here is a newish article about the T cells and the three day challenge, but the articles on the T cells and the three day challenge have been appearing for several years already

Open Original Shared Link

[MsJ]

I went to lunch at Bertucci's today and ordered off their gluten free menu. Sausage soup and Caesar salad. Had a bad case of D about 30 minutes after I was done eating.

What am I doing wrong? Maybe it's not a gluten intolerance after all?

[ravenwoodglass]

I went to lunch at Bertucci's today and ordered off their gluten free menu. Sausage soup and Caesar salad. Had a bad case of D about 30 minutes after I was done eating.

What am I doing wrong? Maybe it's not a gluten intolerance after all?

Or you may have been reacting to the soy sauce you had yesterday or the day before. Our reactions can be delayed by up to a week.

If you can stay out of restaurants for a bit and go with whole foods that you cook fresh at home. Also be sure to take the precautions in the house that you need to. Your own new toaster, new butter and condiments that are for your use only, new strainer and don't bake with wheat flours for others.

Also have you been tested for celiac yet? Do be aware that you cannot be tested if you are gluten free or gluten light. Since you have been gluten-free or light for a month now if you do decide you want a doctor's diagnosis you will need to go back on a full gluten diet for at least a couple of months.

[MsJ]

My celiac test came back negative. I haven't had any pasta so haven't needed the strainer. I have been using the same toaster rather than getting a new one though I do have my own butter and clearly marked it as "gluten-free!". I think I'll stay away from my gluten-free toast for a while.

Thanks for your insight!

[MsJ]

Speaking of tests, this is what I have. Where these enough tests to have had done? Everything looks pretty negative to me.

IGA, Serum Result: 270 (Normal 81-463)

Gliadin(deamidated, Ab, (Iga) Result: 3 (< 20 antibody not detected)

Tissue Transglutaminase AB IGA Result: <3 (<5 negative)

[nora-n]

Sometimes we see that only the IgG versions of these tests are positive.

The deamidated gliadin Ab IgG is for example more specific for celiac than the IgA version.

But I know the routine is to only test the IgG version if the total IgA is low.....