Slightly Elevated Ttg After Years gluten-free

[StephanieL]

So my kiddo's tTG's took forever to drop (his biopsy was negative).

 

Started in the 130's

6 months:70

12 months:same

18 months: 36

24 months: 31

 

DX with hashi's and put on thyroid meds.  Within 3 months of going on the synthroid his tTG's were FINALLY normal...for a year. Now they are *slightly* (23 (normal being 19) and 25 (normal of 20) elevated x4ish months.  I am driving myself crazy. 

Any ideas?

[dilettantesteph]

How old is this kiddo?  Could he be eating at friend's houses?  Could he be cheating, or accidentally getting some gluten somewhere?  What's in his diet?

[StephanieL]

He's almost 7. Doesn't go out without us. Doesn't eat anything not from home. Isn't sneaking anything (we don't have a lot of gluten in the house and what is is behind a locked cabinet because of his little meddling brother  

 

He eats pretty much the same things daily:

 

Pancakes and sausage for breakfast

Sunbutter and jelly sandwich for lunch with fruit and a snack of some kind (chips, gluten-free pretzels, home baked goods)

After school snack- Vegies usually

Whole meats (chicken, beef), veggies and a starch (typically potato)

Bedtime snack-Fruit and sun butter on a spoon

[Gemini]

Has his thyroid antibodies come back down to normal?  If not, that may be driving his tTg slightly upwards and it may not be from gluten at all.  It took a longer time for my tTg to normalize into the low normal range, where it should be, because of my Hashi's.  It was not in the positive range but stubbornly stayed in the higher end of normal and that's not good enough, according to all medical literature I have read. You want, as you know, your tTg to be as low as possible in the normal range. Mine did not drop into very low normal until my thyroid antibodies started to drop down.

 

If you are watching him as closely as you are, and I have no doubt you are on top of this, it just may not be from gluten. Hashi's can swing a bit and levels of tTg can be affected because of this. Is he asymptomatic for gluten ingestion?

[StephanieL]

His thyroid levels are normal. Dr. was very happy with all that. They were WNL at his first visit after he started the meds (so I think it was 2-3 months after).  Vit. D is good, all other blood chem is fine.

 

He is completely symptomatic of gluten though he always was.

[dilettantesteph]

I am one of those who is sensitive to cross contamination.  I had to take a lot of measures to eliminate it before I could be symptom free.  I don't know that I would have wanted to do that without symptoms.  Those numbers are pretty low.  If you think that cc is the issue, I can tell you what worked for me, and you can decide whether or not you want to go there. The main things are having a gluten free household and greatly reducing packaged goods.  I am down to a handful.  

 

Maybe easier would be to research which items other talk about reacting to and just eliminating those, and being super careful about cc in the house.

 

Or perhaps, it has nothing to do with cc and you can follow some of those other suggestions.

 

I hope that you can get the numbers down.

[StephanieL]

Anything with gluten in the house is in one cabinet, prepared in one area (not even in the kitchen). Those dishes are pre washed before being put into the dishwasher as well.  His desk at school is wiped down before he eats with a fresh rag with soap and water. Any x-conn I would think would be from touching things and putting his hands in his mouth which seems like a long shot.  

 

Because of his allergies, I make pretty much everything here at home and that which I don't make has been vetted for it's gluten ingredients so I'm not sure how much more whole foods I can go  I do appreciate your thoughts. I feel like I'm looking for a needle in a haystack

 

I think part of me is just so worried that I'm not doing everything I can and haven't figured it all out for him  I'm also worried that his thyroid still has a goiter after this long.  

 

Why is this not easier

[Gemini]

Stephanie......is the doctor testing his thyroid antibodies or just the TSH and T3/T4?  It would be good to know his antibody levels because if they are still

elevated, then that could be keeping his tTg higher.  My thyroid antibodies were 1200 at time of diagnosis of Celiac and it took 7 years to get those back down into the normal range.....which is 40 or below.  My tTg took quite awhile to go to low normal, from high normal (almost in the positive range) and I was strictly gluten-free. It kind of hung out at that higher number for longer than it should have until my thyroid antibodies started to really come down. Having Hashi's, or another AI disease, can interfere with tTg, although I doubt the AMA believes that. Is there any possibility that he could have something else autoimmune going on? It sounds like you have it down well at home and school, as far as preventing cc. Hashi's can be more difficult to get under control than Celiac.  It really can be frustrating to figure it all out.....don't I know!  

[dilettantesteph]

Pancakes and sausage for breakfast

Sunbutter and jelly sandwich for lunch with fruit and a snack of some kind (chips, gluten-free pretzels, home baked goods)

After school snack- Vegies usually

Whole meats (chicken, beef), veggies and a starch (typically potato)

Bedtime snack-Fruit and sun butter on a spoon

 

I am sorry that this is so difficult.  Let me explain how cross contamination affects my son and I.  We are both very sensitive and I would guess that you don't have to be as extreme as we do.  I just want to explain what to consider when it comes to cross contamination and your meals.

 

Pancakes - how do you make them?  Are you using gluten free flours?  Who do you buy from?  Is it possible that they may contain small amounts of cc?  Are they tested to less than 5 ppm which is smallest levels generally tested for?  Are they made in a facility that also handles oats?  Some celiacs also react to oats.  Is it possible that you son reacts to levels before 5 ppm.  The vast majority do not, but some do.  What I did back when I used gluten-free flours was buy my grains whole, sort through them to remove what looked like gluten containing grain contaminates and then I ground them myself.  You could probably decrease cc possibilities by making sure that you buy a brand that is tested with 5 ppm sensitivity.

 

Sausages - where are they made.  Are gluten containing sausages made in the same facility?  Could there be cross contamination?

 

The sandwich for lunch.  What gluten free bread are you using?  I didn't find one that I didn't react to.  Search the one that you are using here to see how many may have complained about reacting to it.  

 

You could go more whole foods by using produce and unprocessed meat only.  Instead of sausage, use plain meat.  Instead of grain pancakes, use potato pancakes etc.  

 

I would first look into the foods that you are using to see if there are alternatives that are made in gluten free facilities and tested with the most sensitive tests available.

 

Also, Gemini knows about other AI diseases and I do not.  Your problems may have nothing to do with cc.

[Gemini]

I think if Stephanie's son has been responding, over time, to the gluten free diet, then cc will not be the issue, unless there have been drastic changes to his diet with foods that are on the fence with regards to safety.  It is very easy to find gluten-free processed foods that are completely safe for 99.9% of all Celiacs out there. 

 

When someone is healing and then the tTg becomes elevated again, especially when there is a diagnosis of Hashi's to boot, you have to look for other AI diseases or a swing in one that is already present. It could be from cc and the DGP will certainly lend some information on that, but too many docs ignore another AI brewing connection.  These are the same people that use the tTg only for dietary compliance, when that is not the correct test to use. It can be raised from other things, which they tend to ignore unless there are flaming symptoms.

 

You cannot use the comparison with other people to see who is reacting to gluten-free bread or other products because many people believe they are reacting to gluten when they are not.  As we all know, other food intolerances or underlying conditions cause reactions. I found that having Hashi's while trying to recover from Celiac will increase the time it takes for blood work to normalize and most doctors still do not get that.

[StephanieL]

I don't think they are testing T3/T4, just TSH.  I just feel like we are switching Dr's every time I don't get to something and am trying to figure out if I just need to accept things as is (ya know, like I dod for too long when his ttg's weren't falling fast enough before I pressed thanks to you to test for Hashi's )  Believe me, my kiddo is 6 and I really don't want to add things to his list but I just feel like there is always a missing piece and it's literally driving me crazy. I'm about 1/2 ready to take him to Boston to see Dr. Fassano which means FLYING and with my peanut/tree nut allergic kid which is NOT something I take light at all.

 

His pancakes and sausage and bread are all made in dedicated facilities. We haven't introduced oats either because I've never found a safe one anyway.  I really don't think it's food.

[Gemini]

Too many docs, although well meaning, don't run the full thyroid panel and just doing a TSH isn't enough to monitor Hashi's. I know it's tough when you can't get full co-operation from the AMA.  I did the doctor dance years ago and nothing has really changed. Would they be willing to run a full thyroid panel if you asked them?

 

How long has it been since he was diagnosed?  I know it took me 3 years to have everything kind of settle down with the Celiac symptoms and the thyroid problem but I was a lot older than 6. But it can take a long while, especially if you consider how long he was having damage done, even unknowingly. I would at least track it via blood work, if you can. Sometimes docs aren't willing to test too often. I do agree that it most likely is not the food. I follow a strict protocol also, using dedicated facilities and they have never let me down. You can never say never but when Celiac is paired with Hashi's, it adds a whole new dimension to blood work results. 

 

If his tTg continues to elevate, maybe an appointment with Fasano might be something to consider. It can be so hard to find a good doctor and you need someone who really understands Celiac and all those other problems that go hand in hand with it. And you are right.....it shouldn't be this hard to figure it all out! 

[StephanieL]

Thanks again. I'm just feeling so deflated by all this.

 

His Celiac was dx when he was 3.5 so basically 1/2 is life ago! (In a way I think that's awesome that he was so young when we found out!) His blood work from the beginning for T3/T4 was normal. They said (again) that it was most likely because it was caught early.  He's still got a goiter though and that just adds to me thinking something is going on.  

 

I just worry because I know when there's one autoimmune issue there are often others. I feel like I'm waiting for the other shoe to drop, ya know?

[nvsmom]

I think the thyroid can be t especially tricky to treat. When my TSH was finally abnormal enough for the doctors to admit that I had a problem (after 15 years of asking about it  ) my T4 and T3 (both of which I've now learned are not very informative for treatment), free T4 and free T3, and TPO Antibodies where all within normal range. My free T's were near the bottom of the range, and my TPO Ab was near the top of the range but they were all considered normal... Normal wasn't good enough for me though - we're all so different so the cookie cutter treatment can't work for everyone, right?

 

Free T3 and free T4's should (for most people with thyroid issues) be in the 50-75% range of your lab's normal reference range; it was true for me.  TPO Ab levels have made no real difference to my tTG IgA levels (as far as I can see) but going gluten-free did appear to lower my TPO Ab a bit... did not affect my thyroid treatment in any way though. 

 

My tTG IgA levels took a long time to fall too. It took about 15 months to get my tTG IgA to the cusp of the normal range. My EMA IgA fell sooner (that tends to show more advanced damage) - did any other tests decrease?

 

The tTG IgA can sometimes (approximately 5% of all positive tests) indicate other autoimmune disorders (as you know). The ones that I'm aware of are thyroiditis, diabetes, chronic liver disease, crohn's, colitis, and infections - I doubt it is an infection this many months later though. 

 

I hope he's just got a tenacious immune system and it will settle down soon.  Best wishes.