So now on to the results of the endoscopy.
Essentially, everything looked healthy and normal. Which is a good thing, although a part of me was expecting there to be a sign of something.
I’ve always meant to explain in a post what I mean when I say that Ada is super-sensitive to gluten. Or that she reacts to “traces” of gluten or gluten cross-contamination.
There are some people that adopt a gluten free diet but still seem to have some of their lingering symptoms, just not as intense, as they do when they ate gluten.
I found a community of those people on a place called glutenzap.com, where several use something called Elisa tests strips and their own personal reactions and gut feelings to determine when a product has enough gluten cross contamination to make them sick and post about it. It is always interesting when someone posts that this or that product tested positive to 10 ppm of gluten (for exampe) and another person replies that they always thought that something or other made them feel slightly sick.
So for whatever reason, I started paying attention to that website about a month or two after we went gluten free. Some of it was just that gut feeling again, the same one that led me to be gluten free for Ada at 5 months of age in the first place, and some were a few coincidences that just struck me.
For example, I was eating this gluten-free bread regularly, every morning, that was made in a facility with wheat, albeit a seperate room. After I would eat it my hand would lock up… like paralyzed. I’d be unable to move it. It kind of freaked me out.
I read on glutenzap several people mentioning that their “myoclonus”, a neurological symptom of eating gluten, returned with trace amounts. Also, when I’d eat certain things that had a higher chance of cross-contamination my ears would itch and ring and I would ger restless leg ‘syndrome’.
Amazingly, the itchy, ringing ears and restless legs started during my pregnancy with Ada. Don’t ask a western medicine practitioner about this, they’ll think you are nuts probably. But my body and Ada’s seem to be linked in a strange way. And I’d never thought it possible, so convinced of my own super-sensitivity to gluten I’d become aware of, but now, as Ada gets older and nurses less, I can eat some of those same things and NOT get the same symptoms.
And I feel very, very sure of what caused my symptoms. I just think that my body reacts differently as I get healthier, but perhaps as I am less and less in tune and linked to Ada’s body. Call me crazy and maybe I am, but I’m not the first nursing mother who eliminates food for their kid to experiance this.
So I began to believe. On glutenzap, people who could seem a bit like hypochondriacs, became very interesting to me and this “trace gluten” stuff seemed to add up.
I had eliminated things for Ada that seemed to cause her issues one day, but not the next.
A big part of that has to do with the manufacturing and harvesting of grains. Grain mills are huge places and process many grains and beans in different seasons, and huge wheat combines harvest both gluten and non-gluten containing grains. The combines and mills might be blown or washed out, but not extensively.
For example, when she was about 7 months old I ate some corn chips. Corn is often grown and processed with wheat at the field level. The next day Ada has angry red rashes in her diaper area and red, apparently itchy, ears, as well as diahrrea. So I cut corn for a long time.
Then I reintroduced it with homegrown, heirloom corn, and Ada had no reaction the next few days. A few moms I know do say that their kids don’t react to non-GMO organic corn but do react to the common stuff. That’s possible too, but I think it’s trace gluten. Alot of people at glutenzap have had similar experiances. It goes to show why, if you are on an elimination/addition diet, you should reintroduce foods in the purest form possible. If you react to something with ten ingredients, the scientific way to do it is to eliminate them all and test one at a time, one each 4-5 days.
So, cross contamination 101.
A cutting board with bread on it, then used to prepare something for you and you get some gluten crumbs, surprisingly, enough to make your body react.
A knife spread on bread and them dipped back into the peanut butter or jelly jar.
Rice pasta boiled in the same pot that ALWAYS does gluten pasta.
The next level of that is eating bread, cakes, corn chips, nuts et cetera from a facility that uses wheat. The same principle as the shared cutting board, you just can’t see it. And allergen labeling laws make it optional; Ingredients list must say if wheat (and not all gluten, unforunately) is in the product, but some companies declare shared facilities and equipment as an option.
For instance, I contacted Arrowhead Mills to ask about their shared equipment status and they sent me a form letter about what contains gluten naturally (like I didn’t know. Can you see me rolling my eyes) and completely ignored the question. Not a good sign.
Then you have companies that address the issue head on and are very open about it, so they get brownie points.
The next level of cross contamination is at that production and harvesting level. The shared transport trucks, granaries, combines and fields.
One millet company told a woman on glutenzap that there were no shared wheat fields for 100 miles around. She ordered the whole millet and found a wheat berry. Then they told her that they rent combines from a company that does wheat too. It’s understandable, if annoying. These huge machines are very expensive, from my understanding.
Another person found 54 oat berries in her lentils, just another example of how grains and beans get all mixed up.
Have you heard of gluten-free oats? Oats are recognized to be so cross-contaminated with wheat that some companies sell certified guten free oats, from field to packaging. Why there is a disconnect between oats and millet, rice, teff, lentils, corn, soy and et cetera, I don’t know. Someone needs to catch on soon.
It doesn’t mean you can’t eat any grains, it just means that you source them carefully. We buy Lundberg rice, for example which shares no fields or field equipment with wheat.
What does all that have to do with Ada’s endoscopy? I am sure that Ada reacts to traces of gluten and have symptoms as proof, but no medical tests. Of course, a good allergist will tell you symptoms are more important, but for some reasons, we all love to see medical tests.
For an endoscopy to prove celiac disease there has to be enough damage in her gut, of the villi, so that it shows that gluten is causing her to not absorb nutrients and all that jazz.
Since giving her outright gluten was not an option, in my opinion, we decided to give her foods we knew to be cross-contaminated at the bakery or facility with gluten, relaxing all the carefullly-sourcing-our-foods rules. I wondered, if traces of gluten are enough to cause her to throw up, have a rash, and have bowel issues, are they enough to cause celiac-type damage?
The answer in Ada’s case was no, at least not yet. But I’m still glad we did the endoscopy. It’s comforting to know that we can keep a strict diet and if she has something made in a facility with wheat or eats a crumbs somewhere every now and then she isn’t getting lasting damage as far as we can tell. Actually, it’s probably the diahrrea flushing it out of her system that keeps the permanent damage from happening. We often try to stop it, and forget this, but diahrrea is the body protecting itself, as well as her tendency to vomit (gosh I hate that word!).
Now I’m trying to get her tummy health back on track with fermented foods/probiotics and very few grains. Her immune system has taken a hit with the surgery, teeth stuff and much higher levels of trace gluten than normal.