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Member Since 10 May 2013
Offline Last Active Aug 20 2015 11:16 PM

Posts I've Made

In Topic: Daily Free Eating In Classroom?

11 August 2015 - 03:59 AM

My daughter's school is nut-free but otherwise allows kids to eat anything in the classroom. It is a private school in the U.S. with no cafeteria, so everyone eats lunch and snacks at their tables. The teachers assign places and marked each child's place out with masking tape early in the year, and taught them to keep their hands in their own space and not share food. At first they put her at a table with other gluten-free kids (though none with celiac, as far as I know - all their parents seemed unworried about cc). I also packed her a clean cloth napkin to use as a placemat, even though the teachers were great about washing the tables. As the year progressed they switched up the table assignments, but they always seemed careful not to put my daughter next to any of the "grabby" kids. She was in kindergarten last year.

This worked for us, but we were extremely lucky that one of her teachers has a family member with celiac himself, so he truly understood how important it was to keep her space clean. They always made sure they had a gluten-free cutting board to use for school parties with watermelon, etc. For birthday parties when other kids brough in treats, they knew not to give her any even if it was from another gluten-free kid's home, which was socially awkward but necessary because I knew from conversations with parents that their kitchen equipment was not gluten-free. We kept cupcakes and a stash of other treats at school for her. They did use gluten-free art supplies in the whole classroom.

These precautions turned out to be sufficient for my daughter. She did not seem to feel left out, but she did have to be vigilant all the time. While she's never ended up in the hospital from gluten exposure, her celiac antibodies took two years to fully normalize, and they didn't get into the normal range until we eventually eliminated even certified gluten-free products that were made in shared facilities. So she is sensitive to levels under 20ppm. Even so, her blood tests did finally normalize even while in this classroom with kindergarteners eating their own gluten lunches from home. Her teachers were really outstanding, which is the biggest reason she felt safe eating at school.

In Topic: Any Scientific Evidence Than Less Than 20Ppm Can Cause Ttg Rise?

20 July 2015 - 05:35 PM

Dear greenbeanie,


I found an independent gluten testing service, and it looks interesting.  But they don't retest products if they come in under 20pmm, so how do you know that something that you bought last year and was at 5 ppm is still that low? 


I use all Bob's stuff and I trust that their flours are really under 20ppm, but I realize that it may nonetheless be too high for my daughter.  Are gluten-free flours with NO trace gluten really available for purchase?  Like teff, and amaranth, and sorghum and millet and brown rice?  Are you allowed to say your preferred brands on here? 




I have not found a brand of sorghum or millet flour that I trust and can get locally. But the stores in my area only carry a limited selection of Bob's Red Mill flours, and I would probably try those if they are from a dedicated gluten-free facility. We use BRM rice flours (brown and white) with no problem. I have not investigated teff yet, or cared enough about sorghum and millet to order them online.


Avoiding all baked goods for a while (even home-baked) seems like a sensible plan!


As for not retesting products that come in under 20ppm, I feel reasonably confident with that. There's certainly no guarantee that another batch wouldn't have more cc, but having one test that shows no detectable gluten at all (i.e., under the detection limit of 5ppm) seems like the best we can do with the current knowledge available. We've had good luck using only grains and other processed foods that had been tested and had no detectable gluten. We've used the testing results as a kind of alternative to the strict Fasano diet: rather than completely eliminating everything except rice and fresh fruits, veggies, dairy, and meats, we also allowed products that were independently tested and found to have no detectable gluten, plus a few specific foods that we felt fine about because she'd consistently seemed fine with them. It was less socially isolating for my daughter than the Fasano diet would have been, for sure. And it worked for us. We completely cut out any gluten-free foods that had any detectable gluten at all, even amounts under 20ppm. We also completely cut out any certified gluten-free powdered/ground flours or spices that weren't from a dedicated gluten-free facility, regardless of testing procedures or results. In reality, this means we only use fresh herbs and salt and pepper as seasonings. 


I trust that a moderator will step in and let me know if I say anything inappropriate here, but I see no harm in posting specific products/brands that we feel *good* about. My daughter was eating the following processed foods with some regularity at the time she finally got normal test results:

  • Crunchmaster multi-grain crackers
  • Sunbutter
  • Honey Rice Puffins cereal
  • Tinkyada brown rice pasta (various shapes/forms)
  • Welch's fruit snacks
  • Schar breads (various)
  • French's yellow mustard
  • Applegate Farms beef hot dogs
  • Boar's Head pepperoni

My daughter has not tried gluten-free oats yet, except in a few isolated instances over a year ago. We want to see her tTG in the normal range for at least six months before we try that. I am somewhat hopeful that we'll be able to transition to a "normal" gluten free diet (not worrying about amounts under 20ppm) after she heals more. Although she wasn't diagnosed until age 4, she had many symptoms since very early infancy, after a traumatic birth and multiple antibiotics in her first week of life, so it's not too surprising that it might take her system longer than usual to recover. From what I hear about the Fasano diet, at least, it may only be needed temporarily until a certain level of healing is achieved. I'm hoping that my daughter is in a similar situation here, and will be able to branch out more after a while. 

In Topic: Any Scientific Evidence Than Less Than 20Ppm Can Cause Ttg Rise?

16 July 2015 - 03:00 PM

Hi shanasun,

We finally got my daughter's tTG into the normal range - for the first time ever - last month. For her, it did end up being the trace gluten of less than 20ppm in some combination of three different certified gluten free flours and spices. All were certified by the GFCO. They were the only ground/powdery products that we used from facilities that weren't dedicated gluten free. I'd been trusting both dedicated facilities and certified products that came from mixed facilities. Many celiacs apparently eat those products with no problem, but unfortunately my daughter is clearly sensitive to amounts less than 20ppm, even when she was only getting a small amount of those flours mixed in with others in homemade baked goods in a gluten free kitchen. Her tTG finally dropped into the normal range about eight (?) weeks after we eliminated those products. Both of her DGP tests became negative too. Both her local GI and a celiac specialist at a children's hospital agreed that the two flours and one spice we identified and eliminated were the problem. We never found any other gluten we'd missed, and her school and other habits had not changed during this time period.

I discovered that those products had trace gluten through an independent gluten testing service that I subscribe to. I believe there may be a rule against posting info about other specific websites here, and the test results from that site are available to subscribers only, so I can't say more in detail. But with a bit of Googling, I'm sure you can find it!

Sorry if I've repeated stuff from elsewhere in this thread - I'm away from home and only had a chance to read over it briefly. Good luck!

In Topic: Sulfites

30 June 2015 - 03:57 AM

I get classic allergy symptoms from sulfites - runny nose, coughing, swollen tongue, etc. It's pretty much immediate, like within the first few bites. As a teenager I went through a period of gasping for breath after eating dried fruit, though we had no clue what was causing it at the time. I react to foods with naturally-occurring sulfites too (yogurt, vinegar, tofu - basically anything fermented), as well as any bleached flours and starches. It was hard to figure from labels, since sulfites are often used in the manufacturing process rather than added as ingredients, so I'd had no idea that lemon juice concentrate and other stuff like that was high in sulfites.

It took me about six months after going gluten free to recognize the sulfite issue. I doubt I ever would have figured it out beforehand, as there was just too much going on and I couldn't distinguish which foods were causing which symptoms. This did solve a long-standing mystery about why I often got very sick from mashed potatoes and fruit salad in restaurants but was totally with those same things at home: sulfites and/or lemon juice concentrate are added to prevent browning. This is irrelevant now because I don't eat out, but it was nice to finally have an explanation.

Antihistamines do help me quite a lot, though I know some doctors don't consider it a true allergy. In any case, I've been gluten free for over two years now and unfortunately my sulfite reaction hasn't really improved with time. However, I eventually learned my limit, so I can have some fermented foods and bleached flours/starches once in a while as long as I don't have them often.

In Topic: Do You List "gluten" As An Allergy?

26 June 2015 - 03:24 AM

On the allergy line of camp and school forms, we also put "wheat, rye, barley, oats (celiac disease - must avoid even tiny amounts, but antihistimines won't help)," or something like that. Several camp directors and pharmacists have advised that we list it as an allergy, because staff are generally well-trained to take food allergies seriously, and any substitute or new staff member who looked at the form would see the allergy flag immediately. However, I add the bit about antihistimines because if she ever was given gluten inadvertently, I don't want them to compound the problem by then giving her an antihistimine with unverified ingredients.

Even her primary care doctor, who knows celiac isn't an allergy, told us he was listing it as an allergy in their computer system to make sure the info was displayed prominently.

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