ttg increase from year 1 to 2

I recently got the results of my two year ttg follow up - I was 79 at diagnosis, just under 6 after 3 months, 2.8 after 9 months, and now after two years, I am at 6. Should I be concerned? I expected to be around zero by now. I'm obsessively GF - I check everything, meds, toothpaste, floss, any drinks, you name it. I haven't eaten out in months and my house is GF. I have had three airborne glutenings in the past year (two in grocery stores, not near the bakery or flour aisle). It's clear I'm quite sensitive. I also have not had any processed foods at all since July - nothing at all. I eat mainly grass fed beef and buffalo, fruit, and a few vegetables (the ones that don't bother me, which is only a few unfortunately). Could the ttg increase be because of those glutenings, am I getting cross contaminated somehow, could it indicate there's another autoimmune disease, or something else? While my GI symptoms have gone away, I'm still extremely fatigued, brain fog is still there most days, and I'm very achy. Thank you everyone!

5 Replies

  • I have had a similar experience to yours. I was told by a consultant that anything under 10ttg is fine. Mine went up to over 10 (after coming down from 116 to 6) without eating gluten and, like you, I continued to have symptoms. I wonder if it's because sensitivity to gluten continues to develop for quite some time after giving up gluten. Have you tried cutting out eggs? Eggs make me extremely ill with gluten-like symptoms even if I eat a tiny amount and as research has shown that feeding the chickens a high soya diet produces soya derivatives in the eggs, I have little doubt that the same applies to cereal. How about dairy products? Both are fed high-cereal diets and I have been told by Norfolk farmers that 'corn fed' generally means wheat and barley - they use the term 'corn' generically, as it were. 'Maize fed' presumably would be safe. I also avoid caramel food colouring (lots of things especially dressings contain it) and malt vinegar, wheat-derived glucose syrup etc. Incidentally, I had lots of bad advice about this from dieticians who, though at a loss to explain my rise in ttg level, absolutely rubbishing my theory about high sensitivity to these wheat-derived products!

  • Thanks for the reply! I am dairy free, discovered a dairy intolerance a little over a year ago. Although I'm not avoiding eggs per se, I don't think I've had anything with eggs since August of last year. Malt vinegar and anything derived from wheat, I avoid totally. Carmel color, I do drink the occasional diet root beer, but it's listed as gluten free, and caramel colour is considered safe in Canada, it's apparently never derived from wheat.

    The only things I am eating - grass fed beef (mainly from a local farmer where I can trace it from birth through processing, but occasionally from Whole Foods or another farmer when he is out), bison, fruit that's washed very well (mainly raspberries, blueberries, oranges, lemons, I'm largely avoiding high FODMAPS fruit), a homemade chia pudding (chia seeds with coconut milk), and a small amount of dairy free, allergen free ice cream for dessert to help with digestion. I basically eat the same thing every day as most other things have made me feel worse. Nothing processed at all. It's boring, but at least it tastes good, and I've lost 75 pounds in 11 months (I gained 100 in the year prior to celiac diagnosis).

    I have been working with a naturopathic doctor who also has celiac, that has been a tremendous help along the way! She's kind of been my dietician as well, she is very knowledgable on the celiac diet!

  • Have you had any blood tests to check your B12 and other vitamin or mineral levels? If you are deficient, you may need supplements.

    There have been several discussions on tTg levels which may be useful.

  • Thanks for the link - I will check it out! I've done B12 and D testing - B12 was actually high, probably because I eat a lot of beef. D was very low, 25 I believe. I went on 5000 IU/day, at last test, it had increased to 62. I'll be getting it tested again next month.

  • Interpretation of your results should be done alongside your medical notes, with your consultant. Is your consultant saying you should reassess your diet because of this number?

    Traces of gluten could be in anything.

    Personally I think eating the same thing every day is a dangerous practise. Chia seeds might be hailed as the latest health food but they're not replacing a balanced diet.

    I'd go back to my consultant and ask what they think. Not all ails in coeliacs are gluten related if you are following the diet, so you might be harbouring something else that is easily identifiable with a blood test.

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