Can I Assume We're "safe" To Eat Gluten?

[BlsdMama]

We took our daughter to an allergist with brain fog, occasional eczema, itchiness, irritability. The most apparent is brain fog. They did allergy testing - nothing. Then they did IGg testing (like the ELISA) and found slight intolerances to:

Egg (the highest)

Wheat

Nuts

What is strange about this is that we KNOW she breaks out with a rash around her mouth in response to milk and she has had a problem with soy since she was little. Neither of these two things "popped."

We did a gluten free diet for a month a while before the testing to see if we saw an improvement with the brain fog. We saw NO difference.

However, after testing, we DO indeed notice a difference without eggs.

(I wish we didn't.)

We wanted to go forward with more testing so our Pediatrician did an IgA to see if it was greatly elevated or unusually low. We tested four of our other children (the most likely candidates) at the same time.

All four had perfectly average IgA tests.

All four came back with negative tTg tests - (results quantitatively were from 1-3)

Is it safe to assume we do not have issues in this house?

The reason we tested:

Our kids run small. Very, very small. The 2.5yo is in the first percentile. The four year old is in the fifth. They have been diagnosed "failure to thrive" when they were little. They were breastfed. Later, they do seem to catch up a bit but stay very thin.

My husband's family has hypothyroid (father), diabetes (mother & mother's father), and colon cancer (father's father.)

Everyone has mostly normal stools. Rebecca gets tum aches, but it doesn't seem to have a correlation with gluten that we can tell.

Thoughts?

I am beginning to believe NO ONE should eat wheat. However, without the proper motivation (positive test results) it becomes incredibly hard to stay away ALL the time.

[MitziG]

Do not discount gluten as the problem. Celiac is difficult to detect in young children. It sounds like your doctors only tested ttg- a complete celiac panel may reveal more. Ttg is only one (and not the most specific) of the celiac tests. EMA and DGP should definitely be done.

That said, if your kids are gluten intolerant, not celiac, they will never test positive.

Yes, sticking to the diet without that knowledge that you HAVE to is really hard. But worth it. Even tho you trialled the diet without success in your child, chances are good that she was still getting some gluten. In a shared household, gluten contamination is rampant. Unless she had her own dishes, silverware, toaster, cutting board, pans, etc...she still got exposed. And yes, that can make the difference between healing and not healing.

I am of the crowd that feels no one should be eating gluten. I don't think wheat is what it used to be. Foods have been so genetically modified, and our bodies so tampered with thru antibiotics and chemical exposure, that it is the rare person who won't suffer from inflammatory foods like gluten and dairy.

If I were in your position, I would get a full panel done on ALL the kids...and then, if that is still negative, I would pretend it wasn't. Act like your family is celiac, and wipe out all gluten, 100% for a good 6 months. Recovery can be subtle and takes time in some people.

Myself and both kids are dx celiacs. It took 7-8 months for me to notice a difference, longer for my kids. It also took eliminating all casein (milk protein) to really kick the brain fog, fatigue and eczema in the butt.

Trust your gut on this one. Something is going on with your kids- and my bet it has to do with what they eat. tests can only tell so much.

[MitziG]

Reread your post....since your daughter has such an obvious reaction to milk, she would likely respond to a gluten and casein free diet. Try removing ALL casein from her food as well as gluten- I bet the brain fog will clear!

[Jestgar]

It seems to me if you have no improvements with the gluten-free diet, there is no reason to continue it. It is possible to have intolerances other than gluten/wheat, and if DD's issues clear up without egg and milk, then go with that.

Also, you are less likely to test positive to a food you don't consume. That may be why soy and milk didn't come up positive.