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Let's Talk About It

GOOD FOR THEM! The Gluten Free Watchdog is really working for the Celiac Community. Gluten-Free Oat Production is into the stage of "Purity Protocol vs Mechanical or Optical Sorting". They ask us if it is important to us, and of course it is. I love oats and have been severely restricted from eating them. My specialist said not to have the OAT CHALLENGE until I had been totally free from a celiac outbreak or dermatitis herpetiformis for at least one year, and I never reached that golden year. There is an article that includes an interview with Michael Marshall of Marshall Gluten Free Milling. His company will be making available gluten-free oats grown on third-party certified gluten-free farms. The article is available at:

Image: CC--pato garzaNow, I do not know if you have to be a paid up subscriber to the Gluten Free Watchdog in order to avail yourself of this interview, but it is good to know that we are moving ahead with certified gluten free oat production.

The arsenic testing: Rice-based breads are currently at Dartmouth for testing. They have two more product categories left to test as of the middle of June. They were rice grain and rice-based snacks. Choosing five snack foods will be difficult they say as there have been so many product requests. Currently they are thinking of focussing on savory snacks (rice chips, rice crackers, rice cakes, etc.)

Tricia Thompson, MS, RD, Owner/ Founder of Gluten Free Watchdog, LLC agreed to meet with General Mills in July to discuss gluten-free Cheerios. The meeting is/ or was to take place at their new mill facility. It was not another "Cheerios Forum", and those involved with testing Cheerios at Medallion labs also were to be present. General Mills told Tricia Thompson that it was important to provide her with detailed information about their testing protocols as well as allowing her to view the test results. That was necessary so that years of testing data on oats produced under a purity protocol can be compared to testing data on oats "cleaned" at the backend of production using mechanical sorting.

The GLUTEN FREE WATCHDOG has issued a statement on its "Position On Oats as of June 11, 2015, and we have no idea how hard it must have been for the group to reach a consensus on the wording of their position! I have been on a TEAM working on a Positional Statement and it took us two full days to agree on the wording, so a big thank you to all of you!

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"Gluten Free Watchdog supports the use of gluten-free oats by the celiac disease community that are produced under a purity protocol. At this time we do not support the use of regular oats that are cleaned at the back-end of production via mechanical and/or optical sorting to be "gluten-free". Before we can support the use of oats "cleaned" in this manner to be gluten-free we must be provided with thorough testing data. We can then compare this data to the thorough testing data provided to us for oats grown under a purity protocol."

I will share, with their permission again, the interview Tricia Thompson had with Michael Marshall, President and CEO of Marshall Gluten Free Milling (, a company that has been working for fifteen years in the natural and organic grain and food ingredient business, Other companies are bound to get on the band wagon, some of them selling cheaper products in order to attract the celiac public. We are a market remember and they all want a "bite" out of us. The bottom line is $$$ and cents. And, as goes the United States, so goes Canada, and according to Health Canada "every effort is being made to harmonize with other countries which have developed similar food labelling laws, i.e.: The European Union, Australia, New Zealand, and the United States. For example, Canada and the United States require food allergens to be declared either in the list of ingredients or in a "Contains" statement. Canada requires food allergens to be declared either in the list of ingredients or in a "Contains" statement to clearly indicate that the information in the statement is in addition to the information in the list of ingredients and that this information has to be exhaustive. (I.e. - all allergens present as ingredients are declared). What is important, says the positional statement and Andre Gagnon, Media Relations Officer Serving Health Canada and the Public Health Agency of Canada, is that all imported foods sold in Canada must meet the same safety requirements including health based labelling requirements as domestic foods sold in Canada. (Andre Gagnon also speaks very highly about The Gluten Free Watchdog which, though American based, serves the celiac community world wide.

You see, most of us are unaware of how production machines work, how they clean them, and how they just add gluten free sorting at the end of a production of regular foods.

AN ASIDE: Picture if you can, a flour mill, with the air floating with flour dust, so much so, that the people working there wear hair nets and masks. Then picture the machines milling flours for hours and hours. And finally being cleaned and allowing them to flow through with gluten free flours. I have watched a machine making "regular" pasta every day except Thursday, when they make gluten free pasta - pasta for ravioli, lasagne, linguini, etc. They are then hung and dried on long wooden poles. Tell me the machines are cleaned and sanitized and the wooden poles are cleaned and sanitized ready for Thursday's production. We are bound to get a certain amount of infiltration. When a Chinese Food Restaurant tells you they have a gluten free menu, do they have a set aside gluten free large deep fryer and large wok specifically set aside ONLY for their gluten free clientele. I experienced ordering from a gluten free menu in a large Chinese Food Restaurant and came away seriously glutened. Because the Chef was busy, and obviously no-one had told him he could not liberally pour Soya Sauce containing MSG and flour over the entire meal!

Watch for the Fall Issue of the Celiac Journal of Gluten Sensitivity for more about food labelling, more "strange, mysterious names that can be our downfall".

As always, welcomes your comments (see below).

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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.