I would like to ask if anyone has eaten puffed rice from Arrowhead Mills. My daughter, who has celiac, wants to eat it and I am looking for advice. The only ingredient is rice, but they do not test the product so do not label it gluten free. I called the company and they say they clean all their equipment between each product, but since they don't test it cannot label it as gluten free. Would you allow your daughter to eat this product?
He might have celiac disease (or just the start of it). He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it. He might have other food intolerances (milk, dyes, etc.). You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.). Trialing a diet is fine, even a gluten free diet, when you ruled out everything. But you have that quirky TTG result. I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation. An allergist is not a celiac expert nor is primary care doctor. You should get a referral to a Ped GI. If she/he suggests a gluten-free diet, then fine. Because if he improves then, the GI will give you a diagnosis. By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy. This case is not clear and that is a bummer.
The cure is the diet. But he will be going to school and a diagnosis will pave the way for accommodations all the way to college. And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing.
This is his life and yours. You must do what is best for your family. I wish you well and we are here to support you. I care. I am mom.
This just published:
Kernel-based gluten contamination in oats skews gluten analysis results.
Grinding inadequately disperses gluten to allow a single accurate analysis.
Lognormal distribution of the test results renders a single test unrepresentative.
Oats are easily contaminated with gluten-rich kernels of wheat, rye and barley. These contaminants are like gluten ‘pills’, shown here to skew gluten analysis results. Using R-Biopharm R5 ELISA, we quantified gluten in gluten-free oatmeal servings from an in-market survey. For samples with a 5–20 ppm reading on a first test, replicate analyses provided results ranging <5 ppm to >160 ppm. This suggests sample grinding may inadequately disperse gluten to allow a single accurate gluten assessment. To ascertain this, and characterize the distribution of 0.25-g gluten test results for kernel contaminated oats, twelve 50 g samples of pure oats, each spiked with a wheat kernel, showed that 0.25 g test results followed log-normal-like distributions. With this, we estimate probabilities of mis-assessment for a ‘single measure/sample’ relative to the <20 ppm regulatory threshold, and derive an equation relating the probability of mis-assessment to sample average gluten content.
The full article can be accessed at Gluten Free Watchdog if are a subscriber.
If I may say something right now, the suggestions, advice, and information provided to you in this forum is just that: suggestions, advice, and information. What has been provided can be used as tools to help figure out what is going on. Please don't go away disgruntled or too frustrated. There have been times myself when advice and suggestions was given to me, and I was not sure what to do about all the information. I had to think and pray on it before I could act on it because my brain was functioning enough to do something about it right away. It was on survival mode. Forgive me if I am wrong, but I believe this is where you are at right now. You are not sure where to go or what to do, so your body is just doing what it can to function day in, day out. If this assumption is correct, I GET IT! It is not fun, neither is it easy.
Don't give up. Things will get better. Take all of this information and go to your primary doctor to see if you both can put your heads together and figure this out. The answer may not come right away, but be patient. it could be everything coming at you at once that making your body go into hypersentive mode. I don't know, because I am not in your situation.
Until you go to the doctor, do what you know to do and God will take care of the rest. There is something that has kept me sane through this past year: It will be okay because God is in control. He knows what is happening to you and your future is going to be. When you have a good day, enjoy those moments. When you have a bad day, bring back to memory those good days and see if you can do something for another person. I have found this year that if I focus on someone else through the bad times especially things don't seem as grim.
I will be praying for you.