Antibodies Dropping Far More Slowly At Nine Months gluten-free

[KCG91]

I'm just off the phone with my nurse about blood tests I had done May 20th, seven months after going gluten free. I haven't seen the printout yet but she said the ttg IgA is now at 15, with negative being either <7 or <10 (can't remember their ranges off the top of my head). 

 

At diagnosis in September it was at 128, in January it was 22. So why is it now dropping so slowly? I was tested for thyroid problems and diabetes, which came back clear. I can only think that it was due to a glutening on May 10th (would they still be raised twenty days later?) or problems with CC in a shared house (I don't feel sick, though. I hope not, as I've just moved home after uni and re-adjusting to this is hard enough without going over CC again). 

 

Has anyone else experienced antibodies dropping more slowly towards 'the end'? Like when weight loss slows down as you get slimmer? 

[StephanieL]

My DS has been gluten-free for 4 years now and we still haven't gotten to normal.  We did explore thyroid issues (he's got that too) and there was another big drop after that but we are still struggling.  It was a huge 40 pt. drop in the first 6  months then just a few pts. here and there since.  

[KCG91]

Thank you for your reply If you don't mind my asking, is your household completely gluten-free? Mine isn't and I'm wondering if that may be the problem. I've just registered with a lovely new doctor who is re-running all my tests to double check there's nothing there which will give me a bit more peace of mind on that front. 

[HavaneseMom]

Hi Katie,

 

I too had a big drop in my numbers at 3 months, then they continued to drop very slowly after that like yours are.

I just asked my gastro doc about it and he told me to try not to focus on the numbers too much during the first year because it can take time for them to lower to a normal range. The good people here on this forum told me the same thing when I was concerned.

 

I was just recently able to get my TTG IGA numbers under my labs reference range after 8 months gluten free.

I do have a shared kitchen like you do and my husband eats gluten every day (I wish he didn't!). He does have to prep all of his gluten filled foods on one counter only that is in the back corner of the kitchen. Would your family be willing to give you a counter space that is just for you to prep your gluten free food where gluten would be off limits?

 

The one major change I made when my labs came back still high a couple of months ago was that I completely quit eating out. I was only eating out once or twice a month or so before that, so for me it wasn't too big of a change and I wanted to eliminate any traces of gluten I might be getting from that. I'm not sure if that had anything to do with my progress or not, but I will say that I saw the most improvement in my health over that time period.

 

Good luck!

[KCG91]

OK, it sounds as though it isn't that unusual then. I also still eat certified oats (I never realised that I was meant to quit for six months) - I wonder if this could be the cause. I'm only home for two months, then I have six weeks in Kenya (I've been before I was diagnosed but even so it's going to be an interesting time!) and then hopefully I'll be able to get a proper job sorted and move into my own, gluten free place (oh the luxury!). Basically the next three months are quite an unsettled time in terms of lifestyle anyway but when I come back, if I'm still living at home I will definitely ask for a gluten-free counter. My brother will be back at uni then too - he is the only bread eater in our house but he is a careful ones, his friends less so. I won't miss having all his breadcrumby friends around. Yesterday I watched them carefully get the jam for their toast out of the jar with a clean spoon - then stick bready knives in the butter. Argghhh!

 

Well done for getting yours under the limits I think after the next three months, if it hasn't dropped at all I will tighten right up. I hope it gets easier once I'm settled on my own - at the moment it feels like a lot of upheaval (my mum can be quite territorial!) for just a few months. 

[Seeking2012]

My sister had really high numbers in the beginning and it went down a lot but then it stopped going down. We discovered that she was sneaking gluten foods from the fridge (she is autistic and we have to watch what she eats). So the entire family went gluten-free and anything that had gluten went into a special locked mini-fridge. After that her numbers started coming down again. And mom cooks her food on dedicated gluten-free cookware etc. If the numbers are slowly going down maybe it's due to cross-contamination but I'm very new to this so I'm not sure.

[greenbeanie]

My daughter was diagnosed at age 4 with a tTG-IgA of 65, and six months later it was down to 9. This was on a scale with 0-3 negative and 4+ positive. Her GI decided to do follow-ups every three months until it got into the normal range. Nine months after diagnosis, it was down to 5 (but this was a much smaller drop than the initial one). We're doing a blood draw in a few weeks, at the one-year mark, so I won't know the results of that for a while yet.

 

Our entire house was gluten-free for the first six months, but since then my spouse has brought in a few non-crumbly packaged foods that are kept in a separate cupboard and eaten separately with no shared cooking equipment or cutting boards, so I'm confident there's no cc happening at home. The only grain products we eat are from dedicated facilities, and I've triple-checked all vitamins, condiments, and everything else. Her preschool classroom switched all their snacks to gluten-free (with brands checked with me and separate jars of sunbutter, etc. from the other classrooms). Other kids do bring gluten in their lunches, but the teachers are very vigilant about cleaning tables thoroughly, sweeping up immediately after lunch, washing hands, letting her open her own food containers and throwing out anything that comes into contact with anyone else's lunch space, etc. On her doctor's advice, we have not fed her gluten-free oats (except twice early on) either. We have not eaten at any restaurants except for take-out bagged chips and salsa from a new bin at Chipotle on rare occasions. Her doctor was surprised that her numbers  were still elevated at the 9-month mark with all these precautions, especially since he said that children often heal faster, so I've also been wondering if there's something else going on or if she's just slower than usual to heal. Anyhow, my sense is that it may just take longer for some people's numbers to go down, and as long as they keep declining (even if not at the same rate as initially), things are probably ok. 

[StephanieL]

Scops ever 3 months seems pretty aggressive esp. when it hasn't been a year yet!  I have heard that even at 18 months things aren't necessarily going to be WNL yet.  I'm sure each Dr. has their own ideas though on what constitutes normal but I've heard 12 months minimum!

[greenbeanie]

Scops ever 3 months seems pretty aggressive esp. when it hasn't been a year yet!  I have heard that even at 18 months things aren't necessarily going to be WNL yet.  I'm sure each Dr. has their own ideas though on what constitutes normal but I've heard 12 months minimum!

 

Just wanted to clarify - if it's my comment above that you're referring to, I didn't mean that they're doing scopes every 3 months. They're doing follow-up tTG-IgA tests every three months until she gets into the normal range. She only had one scope at diagnosis. 

[StephanieL]

Ahhhhh okay!  lol  I haven't had enough coffee today  I guess as I misread it it seems!  lol  We were "offered" to scope every 6 or to just go gluten-free and look at blood work every 6 months after super high tTG's but an inconclusive biopsy- we chose option 2! 

[KCG91]

greenbeanie I think I'll stick to three monthly bloods too (she says, having just had what feels like a bucketful of blood taken this morning!) along with a large dose of patience and just keep doing my best for the next year. I found out that my iron levels are back to normal (they were super low six months ago) without the help of any supplements which makes me think my insides are actually doing better, which is the important thing. Hope her recent blood draw is in the negative!

[nvsmom]

I'm another who took a long time to come down. My last tes was at over a year gluten-free, and it was just about normal (20.9 with and upper limit of 20) but that was after I was put on some steroids so that may have affected it. I will be having myself tested again this summer, and I'm curious if it will go up now that I'm off steroids.

 

I do have a thyroid problem so that could be affecting my numbers too, although the doctors refuse to call it Hashi's because I don't have super high antibodies attacking my thyroid... It just went on strike a few decades ago for no reason. 

 

I know I am gluten-free too.