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greenbeanie

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

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Since Bob's admits their trace gluten content varies from lot to lot, and your daughter is having symptoms along with the increased antibody level, maybe you've gotten some flour lots at the higher end of the range. I had to follow the Fasano diet to get my last antibody level down. Could you try eliminating baked goods for a month to see if symptoms improve?

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There is a lot of anecdotal evidence and at least one scientific paper that say that the severity of the response to gluten increases after going gluten free. There is also scientific evidence that the T cell response (part of the immune response) to gluten increases after going gluten free. I haven't seen any papers discussing TTG response.

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Dear All,

 

Goofed on the last one.  Trying again! 

 

Thanks so much for the great feedback---the site recommendation and specifics on your daughter's recovery, (@greenbeanie), the DGP explanation (@nvsmom), and the solid advice (RMJ).  I am a scientist and have read deeply in the literature, but (shaking head), a year in I'm still learning stuff all the time.  Her health feels like a shifting target---what worked 6 months ago no longer does, and I know all too well that odds are it's just going to get trickier over time.

 

We will eliminate all baked goods for some time and retest.  I think I need to know the exact gluten content of all the flours I am using, and then go from there.  Maybe I'll have to buy whole grains and grind all my own flour--I know just how easy it is for grains to get cc'd at every step of the growing/harvesting/transporting/processing but find it hard to imagine that a teeny weeny grain like teff could have wheat grains mixed in that wouldn't get caught.  But then I have no idea what kind of trace gluten my teff has so . . . . .  lots to figure out still.

 

Thanks, everyone!

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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!

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? 

 

Thanks!

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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? 

 

Thanks!

 

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. 

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It is fine to post what your favorite products or recommendations.  Just not if you sell it/own it/are affiliated.  Heck, without the guidance of this forum on what the good items are, I would have wasted so much more money.  :)  

 

Applegate Farms Beef Hot Dogs are so good.  Makes regular hot dogs taste inferior.  Tinkyada is also my favorite pasta.

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Shanasun,

 

You have mentioned Eosinophilic Esophagitis twice in your posts.  EE can be affected by environmental and seasonal allergens. You can't really avoid allergens unless you have identified them.  Allergy testing can be an option~but EE reaction is not a true allergy.   The EE symptoms are "gluten" like, but much more severe.  Add the fact that once an eosinophil is activated, it is actively damaging for 12 days.  (so an exposure to a "trigger" from a week and a half ago was the problem)

 

I suggest you keep a food and ACTIVITY journal.  You might be able to track the "trigger" exposure to a household of a playmate. 

 

My daughter was getting sick again when she was 6 after being on a gluten free diet since she was 16 months old.  (She also had Celiac reactions from breast milk)  I went to the school and observed because I thought it had to be gluten reactions.  Kids eat food almost like sprinklers spraying out water.  They also like to tell secrets behind gluten sandwiches.  Ewww.  Even the little fingers covered in goo and saliva make me wonder how advanced the human race really is!!?

 

As for your child being on a strict diet during parties, it is just substitution.  We had to eliminate all top 8 allergens, peas, and gluten and looked at the "non-food" chart for ideas.  Wouldn't you know some kids wanted her cotton candy instead of birthday cake and ice cream.

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Shanasun,

 

You have mentioned Eosinophilic Esophagitis twice in your posts.  EE can be affected by environmental and seasonal allergens. You can't really avoid allergens unless you have identified them.  Allergy testing can be an option~but EE reaction is not a true allergy.   The EE symptoms are "gluten" like, but much more severe.  Add the fact that once an eosinophil is activated, it is actively damaging for 12 days.  (so an exposure to a "trigger" from a week and a half ago was the problem)

 

I suggest you keep a food and ACTIVITY journal.  You might be able to track the "trigger" exposure to a household of a playmate. 

 

My daughter was getting sick again when she was 6 after being on a gluten free diet since she was 16 months old.  (She also had Celiac reactions from breast milk)  I went to the school and observed because I thought it had to be gluten reactions.  Kids eat food almost like sprinklers spraying out water.  They also like to tell secrets behind gluten sandwiches.  Ewww.  Even the little fingers covered in goo and saliva make me wonder how advanced the human race really is!!?

 

As for your child being on a strict diet during parties, it is just substitution.  We had to eliminate all top 8 allergens, peas, and gluten and looked at the "non-food" chart for ideas.  Wouldn't you know some kids wanted her cotton candy instead of birthday cake and ice cream.

Dear Mommida,

 

Thanks for the post.  So are you saying your daughter has EE and celiac, and the EE only resolved when you eliminated all the allergens and peas?  And when her symptoms resurfaced at the age of 6, it was from EE, not from other kids cc'ing her food with gluten at lunch? 

 

When you say EE symptoms are gluten-like, could you clarify?  Do you mean that when your daughter developed EE her symptoms mimicked gluten exposure, but were stronger?

 

Thanks! 

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My daughter was diagnosed with Celiac at 16 months old.  Gluten symptoms were "D" and vomit.  Long term symptoms dark circles, tired and not gaining weight.  She was diagnosed with EE when she was 6 years old.

 

Some of the symptoms....

"D" and constipation (constipation was diagnosed by doctors feeling lumps in her bowels, but seriously the kids had explosive "D")

she said her whole stomach hurt (circling under ribs around the sides and down to her hips ~ she did not say anything about collarbone down chest area)

she did say she had a sore throat and white blotches were present making it seem like strep throat

dark circles under her eyes

vomit, vomit, vomit up to 6 times a day, like acid reflux ( she would be hospitalized for dehydration and while fighting a severe stomach bug she threw up blood)

headaches and extremely tired ~ she would fall asleep on her way home from school

a clump of her hair fell out and she was not gaining any weight

bad breath and very thirsty

<She was 6 years old and in school for a full day- eating lunch at school.  So it really seemed like it was gluten, again.

 

 

She is 12 now and doing fine.  There is always a worse time at the end of summer when grass starts dying off in the end of summer heat. Autumn does not get any better, but worse, with the fallen leaves.   All seasonal allergies are cleared up by the deep freeze of winter.

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