ttg increase from year one to year two, should I be concerned?

Posted , 2 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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!

1 like, 10 replies

Report

10 Replies

  • Posted

    Do you by any chance eat codex wheat starch (i.e. Wheat with the gluten taken out) or gluten free oats? I find I can't tolerate codex wheat starch, not all all Coeliacs can. You say you have checked meds etc., have you considered keeping a food diary? You'd be surprised at the amount of things which sneak back into our diet without realising.  I'm not sure if anyone gets a zero figure (perhaps someone else can help with that), you really need to be speaking to your consultant, they are the best people to help you with this.

    Some Coeliacs have what is called refractory disease (which is about 2 - 5% of Coeliacs) and may need steroids to help them.  Also, the symptoms your describe might not be connected with your coeliac disease. I have fibromyalgia as well, and the symptoms you describe sound familiar. 

    Report
  • Posted

    Thanks for the reply! I'm in Canada, where our system is a bit different from the UK, but I do now have a good GI specialist. My main contact for celiac is actually a naturopathic doctor who also has celiac - a great source of information! And I've done probably 1,500 hours of research since diagnosis two years ago - yet I've come across strangely little (basically nothing) on increasing ttg at these amounts. I do avoid GF oats and the codex wheat starch. The codex is just becoming more common here, I will definitely avoid it! Basically, the only things I eat are grass fed beef (mainly from a local farmer), bison, fruit (mainly raspberries, blueberries, oranges, typically avoiding high FODMAPS fruit), limited vegetables (several still bother me), chia pudding (chia seeds and coconut milk), and small amounts of dairy free, allergen free ice cream. I'm dairy free as well as gluten free. I did the food diary (through an app) to see detailed nutrition and calorie content for a while - these days, my diet is pretty limited through things that bother me instantly, so it's basically the same from day to day.

    Fibromyalgia is definitely something I've considered. I've had high ferritin for the past few years, I'm finally down to 600 (under 300 is considered normal), but I was at 2400 a year ago. I've lost 75 pounds since then, I gained 100 in the year prior to diagnosis.

    I strongly suspect the symptoms I have are related at least in parf to something else - celiac may contribute, but I don't think it's the sole issue. I've come across refractory celiac disease, and wonder about it. Although, most situations I've come across had ttg that rebounded to or near pre-diagnosis levels, and I'm far from the 79 I was at diagnosis. But I'm definitely not ruling anything out!

    Report
  • Posted

    I'm the same as you and can't eat dairy, a lot of Coeliacs have that problem. I was wondering what the law is like in Canada regarding packaging of gluten free food(?) Is it possible that some could be getting through that way? FODMAP is definitely the way to go and you certainly seem to have been thorough with your research.  Have you considered thyroid problems? I have an under active thyroid and as you will be aware the risks increase (once you have an auto immune disease) of having other auto immune diseases. 

    I hope you get to the bottom of it, as I know it can be frustrating playing detective.

     

    Report
  • Posted

    Canada's GF standards are pretty good, but to 20 ppm. I haven't had any processed food since last summer though, I really don't eat anything out of the foods in the last post - all whole foods. 

    Thyroid was was something I'd long wondered about, even though TSH was normal. I finally got the full thyroid panel (through my ND), reverse T3, T4, etc. The numbers were normal, but towards the edge of normal. It didn't seem enough to have a big impact anyway. 

    I do wonder about other autoimmune diseases, Crohn's and MS come to mind. I do have an MRI set to be scheduled, I believe that'd be the best way to rule out MS. 

    Report
  • Posted

    If your thyroid is the upper edge of normal, I would get it checked again in 3-6 months (depending how long ago you had your last blood test), and while you are there mention your last coeliac results. Doc may tell you it's nothing to worry about. *fingers crossed*.
    Report
  • Posted

    It's my naturopathic doctor who tested me, and she did suggest a supplement for the thyroid and felt it was worth watching in the future. Unfortunately, I reacted poorly to the supplement, but retesting in the future is definitely an option. Costs a bit of money, but if it helps, it's worth it!
    Report
  • Posted

    Selenium was the supplement, if I recall. I'll double check on that! 
    Report
  • Posted

    Selenium sounds right. When I first was diagnosed all those years ago, my thyroid was severely hypo, so I doubt taking selenium would have made much difference to me at the time. 

    Would you be able to see a regular doctor instead of a naturopath? Then you can discuss all of the above issues.

    Report
  • Posted

    I do go to a regular doctor as well,but in Canada, regular medical access is not nearly as good as it should be. Very overcrowded system. I just switched to a new doctor, so it'll be a while before we get a chance to discuss this type of stuff. Having said that though, I do have a great GI specialist, and my ND is incredibly knowledgable - she has celiac herself so it's a point of emphasis for her. She has been incredible for me so far, and her training is comparable to an MD (she actually started out training to be an MD). 
    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up