Any Scientific Evidence Than Less Than 20Ppm Can Cause Ttg Rise?

[greenbeanie]

[Oops, title was supposed to say "thaT less than 20ppm"...]

Does anyone know if there's reliable scientific evidence showing that some celiacs have a rise in tTG caused by gluten levels less than 20ppm? I'm wondering about actual antibody rises, not just symptoms.

As I posted in another thread, my daughter's tTG had gone way down since diagnosis and then rose again recently. Aside from Schar bread, which she was eating before with no problem, I make almost all our baked goods from scratch. Triple-checked everything. But I did just find reliable evidence that one of the gluten-free flours I've been using has tested at 7-9ppm. I'd estimate that she probably eats three or four muffins a week made from scratch that include that flour mixed with others. So she's maybe getting 1 cup or so of the 7-9ppm flour per week. Is it even conceivable that that could be enough to cause an actual rise in tTG?

For what it's worth, her celiac symptoms clearly started when she was a young infant who was exclusively breastfed, before she ever ate wheat directly herself. And she also had an extremely clear reaction to Rice Dream after going gluten free. So I do know she's very sensitive. I had been using this flour all along, and the tTg rise was only recent, but her tTG had never dropped completely into the negative range and I have been baking muffins more frequently lately.

[Gemini]

I have never seen anything that would indicate that such low levels of gluten would cause a jump in tTg. I think that if her DGP is negative, then the cause of the jump would not be gluten ingestion. If it were possible that low levels, by chance, caused the jump, then it would also show in her DGP results.

[LauraTX]

You may find this article an interesting read... some people who still have symptoms on a gluten-free diet have gone on the Fasano Gluten Contamination Elimination diet which cuts out basically anything processed.  Some see improvement. Open Original Shared Link

[greenbeanie]

Thank you both. That is the first article I've seen that discusses tTG values (rather than just symptoms) in situations like this - very helpful!

She isn't even quite six yet, and it would be so incredibly isolating to do a completely whole-foods-only diet, given the million and one birthday parties and pizza days at school. Different treats are one thing, but no treats at all would be socially devastating. I hope it doesn't come to that...but I have a feeling this is probably where we're headed. I am also seriously concerned about her arsenic intake already, since she drank rice milk daily for several years and ate lots of rice products even before diagnosis, so even a three-month trial with rice as her only grain is worrisome. I suppose that may be the lesser of two evils, though.

We did just make an appointment with a celiac specialist at a children's hospital. I'm sure they'll agree to order DGPs routinely for follow-up. The one time I convinced her current GI to order the DGPs, they were negative (despite a tTG that had been hanging out at "weak positive" level for over a year). If we did have DGP results now, and they were positive, I'd be inclined to think that this tTG rise might be coming from the 7-9ppm of cc in the flour, as unlikely as that sounds. But without current DGP results, I'm at a total loss. That problem will be solved soon, though.

[BlessedMommy]

If you do rice as her only grain, you could choose Indian white basmati rice. That is one of the safest.

 

In our family, we rarely ever eat brown rice anymore, as all brown rices have substantially higher levels of arsenic than white rice. My husband and I decided that the extra nutrients and fiber in the brown rice wasn't worth the extra arsenic exposure.

[RollingAlong]

Open Original Shared Link

 

There was a research review put together before the US gluten free standards were set.  Basically, the standard was set at 20ppm because the "vast majority" of celiacs could tolerate exposure at that level.  

 

I think this link will take you to the PDF entitled Health Hazard Assessment for Gluten Exposure

in Individuals with Celiac Disease:

Determination of Tolerable Daily Intake Levels

and Levels of Concern for Gluten  

 

 

(US FDA May, 2011)

 

 

A very detailed look at the issues. 

 

An opinion piece with links to the research. This is actually a pretty good place to start, I think; but the 1st paper has an interesting discussion of slow, long term reactions, that may pertinent.

 

Open Original Shared Link

 

Good luck sorting things out for your daughter. 

[greenbeanie]

Thank you, thank you! The citations in the FDA report are just what I was looking for! I'd found a few of them separately through PubMed searches, but this is by far the most systematic source I've seen with actual gluten levels and documented reactions discussed in depth. And it's somewhat of a relief to see evidence that yes, even some kids do react to levels under 20ppm - because we've been through every item in our house and at school a million times and found no hidden gluten source that we'd missed.

We're awaiting an appointment for a second opinion at children's hospital with reputable celiac specialists, but meanwhile I've removed all but a few processed foods, even GFCO-certified ones, unless they've been independently tested no have no detectable gluten at all (with tests sensitive to 5ppm). And I've stopped baking from scratch with gluten-free flours on my own. We're back on a high-rice diet and had been using white basmati from California anyhow, so I'm trying not to worry about the arsenic thing for now.

[RollingAlong]

Your tax dollars at work! 

[greenbeanie]

Update: I'm thrilled to say that her tTG dropped by almost half in less than a month! I removed that certified gluten-free flour with 7-9ppm cc traces, and also removed milk. Normally we wouldn't have checked tTG again so soon, but her GI ordered a re-check because we're headed to a celiac specialist soon and wanted the most up-to-date results. She has continued eating a few other processed gluten-free foods that have been independently tested by a reliable source and found to have no measurable cc. She has also been super happy and in a great mood.

Her GI did agree to run the DGP tests too, and they were negative but higher than six months ago. So we only have a few DGP values for comparison, but she had a big drop in DGP from strong positives at diagnosis to negative 18 months later (which corresponded to her huge tTG drop), then no DGPs drawn with the tTG spike last month, then negative-but-higher-than-before DGP now (corresponding to her tTG falling again but still remaining higher than it was last time DGP was tested - so we probably caught it on the way back down). So this all makes sense!

Before anyone jumps all over the milk comment, I'll just say that she had clear, obvious (in retrospect) celiac symptoms as an exclusively breastfed infant, before she ever had a single bite of gluten herself. The symptoms went away when I stopped breastfeeding and put her on Neocate formula, then returned when she began solids. She wasn't tested for celiac until age 4, but she repeatedly tested negative for milk allergy (which wouldn't affect tTG anyhow). She tested negative for lactose intolerance last fall, after she'd been gluten-free for a year and a half. Actually, that's the one major change in her diet that correponded to the tTG spike: she began having milk in her cereal every day after passing the test (the same cereal she'd previously eaten dry). If the miniscule amounts in breastmilk were enough to cause problems, it makes sense that the miniscule amounts in cow's milk might too, given that dairy cows are fed barley. I realize that most celiacs don't get tTG rises from plain dairy - but most don't get tTG rises from occasionally eating baked goods made with a flour that contains 7-9ppm of gluten either! In any case, we now have strong evidence that it was one of those two things. I want to see her tTG completely negative before trying either again, but once that happens we can test them separately. I'll be curious to see what the new celiac specialist says. Her current GI seems to agree that, as unlikely as it sounds, the tTG rise was caused by way less than 20ppm.

[RollingAlong]

Wow, great news!  I can't help but think that the mood improvements are an especially good sign.  I hope your daughter continues to improve and eventually joins the "vast majority."

[nvsmom]

I'm so glad that she is doing better and all the pieces are falling into place!  

 

When I read your comments about milk, my initial response was to think, "No way, gluten isn't in milk," but you are right that gluten can get into breast milk, so why not into cow's milk too.... Interesting.  I feel the need to research.

[RMJ]

I was wondering the same thing (about cow vs human milk). Cows (ruminants) have a very different digestive system than we do - perhaps they do a better job of breaking down gluten all the way into amino acids.

[greenbeanie]

I'm wondering if the milk thing might be a fairly straightforward cc issue fom barley fodder blowing around in barns, even if the actual milk itself is totally digested and contains no gluten fragments. I've never worked on a dairy farm, but I have worked on a farm with other animals, and their hay and feed made dust everywhere! Seriously, it blew around and coated everything. I have no idea how milking equipment is stored or cleaned, and maybe I just worked on an unusually windy farm; it may be much less of an issue in large commercial farms.

In any case, our problem could be from the 7-9ppm in the flour alone, so I'm not necessarily assuming milk is the problem. It could be either - and both seem so unlikely that it's hard to tell which is more plausible. My daughter is dancing around and laughing as I write, so at this point I'm just so happy she's feeling this good that I'm happy to stick to our current diet for as long as it takes to get to the bottom of things.

[nvsmom]

All I can find is that unlike breast milk, they have never found gliadin in cow milk, so it has been labelled gluten-free.  I suppose that there could be parts of the gliadin in the milk (like in a gluten removed beer such as Daura) or it could be another "gluten" protein that hasn't been identified.  It appears cow milk is thought to be gluten-free at this time.

 

I find it unlikely that barely would get into the milking equipment.  It's usually stored closed, or at least it was at my uncle's farm.  I think allowing dust and grit to get in would eventually cause problems for the cows too.

 

I think the 7-9 ppm flour is probably the culprit, but human's don't need cow milk (just cows do   ) so removing dairy (just to be safe) is no big deal.  You could always try organic (pasture fed) dairy at a later date - those cows aren't fed barley.

 

Hope she is well soon.  

[shanasun]

I am struggling with similar issue as greenbeanie and would love some advice. 

 

My daughter's ttg dropped from 207 at time of diagnosis to 97 at 3 months-post, and then 2 after 6 months of being gluten-free.  Then at her 1 year bloodwork she was 28.  We had permitted her to play with play-dough at school starting about 6-8 weeks before the result of 28, with the caveat that the teachers help her scrub her fingers with a toothbrush.  That was clearly a bad idea, so we discontinued that (failed) experiment.  We also realized that her symptoms of minor glutening were difficult to detect as they could just as easily be from not enough sleep, but that we had to pay very close attention--I now track her daily in a notebook.  Three months later, ttg is still at 21, and she is symptomatic with occasional mild headaches and emotional unpleasantness.  Given her original drop of 205 points in 6 months, I have to assume that she continues to be exposed to gluten, even after removing the play-dough..

 

Her GI is unconcerned, because 21 is barely positive.  But  it is killing me.  We are just as extremely careful as we were when she dropped from 207 to 2.  She was symptom-free, now she's not. 

 

Can someone tell me more about this DPG test?  What does it tell us, and why does it need to be tracked as regularly as greenbeanie advocates?

 

Also, has anyone else seen their child drop to strongly negative, then rise again without any obvious explanation, as her food situation has not changed? 

 

Finally, how do you (@greenbeanie) know that the flours you are using are 7-9 ppm?  I buy all my flours as individual flours from Bob's Redmill and mix them in various ways for my baking.  I make all our bread, because the store-bought is too low quality (mostly tapioca) and too expensive).  All the flours are gluten-free, but I don't know what the exact ppm is for any given flour.  When I called Bob's, they said it varies from batch to batch because each shipment they receive can differ--it just has to meet the 20ppm standard.  Would you mind sharing more about how you source stuff?

 

We have a dedicated gluten-free kitchen and eat very little processed food, but my daughter does have a sandwich every day of Bob's flours, and I do bake other bready things regularly (~ once a week). That said, this was also true when she had a ttg of 2 and no symptoms.  Likewise, she has oatmeal almost every morning, but it's made from Bob's gluten-free oats, and this too hasn't changed during our entire time being gluten-free.  Why would it bother her now? 

 

Help, please.  I don't know what to do.

 

These are my hypotheses so far, but none of them seem particularly plausible:

 

1.  She has developed a new and acute sensitivity to trace amounts of gluten in the last 6 months.  Her GI says people are usually sensitive from the beginning, so pooh-poohed it.

2.  She has an elevated ttg from eisonophilic esophogitis, which can elevate ttg, but does not explain her glutening symptoms.

3.  She has developed an oat sensitivity in the last few months and is one of the 8% for whom it can cause a rise in ttg.

 

Thank you!!

[kareng]

I am struggling with similar issue as greenbeanie and would love some advice. 

 

My daughter's ttg dropped from 207 at time of diagnosis to 97 at 3 months-post, and then 2 after 6 months of being gluten-free.  Then at her 1 year bloodwork she was 28.  We had permitted her to play with play-dough at school starting about 6-8 weeks before the result of 28, with the caveat that the teachers help her scrub her fingers with a toothbrush.  That was clearly a bad idea, so we discontinued that (failed) experiment.  We also realized that her symptoms of minor glutening were difficult to detect as they could just as easily be from not enough sleep, but that we had to pay very close attention--I now track her daily in a notebook.  Three months later, ttg is still at 21, and she is symptomatic with occasional mild headaches and emotional unpleasantness.  Given her original drop of 205 points in 6 months, I have to assume that she continues to be exposed to gluten, even after removing the play-dough..

 

Her GI is unconcerned, because 21 is barely positive.  But  it is killing me.  We are just as extremely careful as we were when she dropped from 207 to 2.  She was symptom-free, now she's not. 

 

Can someone tell me more about this DPG test?  What does it tell us, and why does it need to be tracked as regularly as greenbeanie advocates?

 

Also, has anyone else seen their child drop to strongly negative, then rise again without any obvious explanation, as her food situation has not changed? 

 

Finally, how do you (@greenbeanie) know that the flours you are using are 7-9 ppm?  I buy all my flours as individual flours from Bob's Redmill and mix them in various ways for my baking.  I make all our bread, because the store-bought is too low quality (mostly tapioca) and too expensive).  All the flours are gluten-free, but I don't know what the exact ppm is for any given flour.  When I called Bob's, they said it varies from batch to batch because each shipment they receive can differ--it just has to meet the 20ppm standard.  Would you mind sharing more about how you source stuff?

 

We have a dedicated gluten-free kitchen and eat very little processed food, but my daughter does have a sandwich every day of Bob's flours, and I do bake other bready things regularly (~ once a week). That said, this was also true when she had a ttg of 2 and no symptoms.  Likewise, she has oatmeal almost every morning, but it's made from Bob's gluten-free oats, and this too hasn't changed during our entire time being gluten-free.  Why would it bother her now? 

 

Help, please.  I don't know what to do.

 

These are my hypotheses so far, but none of them seem particularly plausible:

 

1.  She has developed a new and acute sensitivity to trace amounts of gluten in the last 6 months.  Her GI says people are usually sensitive from the beginning, so pooh-poohed it.

2.  She has an elevated ttg from eisonophilic esophogitis, which can elevate ttg, but does not explain her glutening symptoms.

3.  She has developed an oat sensitivity in the last few months and is one of the 8% for whom it can cause a rise in ttg.

 

Thank you!!

 

 

 I think you should consider the most likely explanation - she is getting gluten at day care.  Or someone else who watches her for you?  Maybe keep her home for a couple of  months and test again?  

[shanasun]

Well, that's always possible, but it's actually more unlikely than the other possibilities, because her pre-school situation and her mornings with her grandparents did not change over the course of the year---in other words, she dropped to a ttg of 2 and was symptom-free while at pre-school and spending time with her grandparents.  I have an excellent relationship with the people in both settings and exercise total control over how they handled food and art supplies, so that is unlikely to be the source.

 

You've kind of nailed the problem on it's head---she dropped to a 2 and then rose again to the 20's, all while nothing changed in all her environments, with the exception of the playdough experiment.  And that is unlikely to be the cause of her still-elevated ttg because she dropped from 97 to 2 in 3 months, so surely she can drop from 28 to negative in 3 months if that was the only source of gluten.

[kareng]

Well, that's always possible, but it's actually more unlikely than the other possibilities, because her pre-school situation and her mornings with her grandparents did not change over the course of the year---in other words, she dropped to a ttg of 2 and was symptom-free while at pre-school and spending time with her grandparents.  I have an excellent relationship with the people in both settings and exercise total control over how they handled food and art supplies, so that is unlikely to be the source.

 

You've kind of nailed the problem on it's head---she dropped to a 2 and then rose again to the 20's, all while nothing changed in all her environments, with the exception of the playdough experiment.  And that is unlikely to be the cause of her still-elevated ttg because she dropped from 97 to 2 in 3 months, so surely she can drop from 28 to negative in 3 months if that was the only source of gluten.

 

 

When she is out of your control, you don't really know what is going on.  People change at day care.  Grandparents give a kid something they are sure is gluten-free but isn't.  Kids accept treats from other kids.  

 

Let me give you a few examples I have seen over the years - 

 

- The person who started eating the generic Rice Chex assuming that all Rice Chez are gluten-free.  The generic still had malt. 

- The person who started eating corn flakes because they always liked them, hadn't had any in a while & they are just corn, right?  Of course the answer to that is that they might not be.

- The kid who eats Rice Krispie treats at home - so they must be fine from another kids house.

- kids sharing food when the day care workers aren't looking.  As kids get older, there are less people helping them with food.  IF they saw a kid sharing, they might even be afraid to mention it.

[shanasun]

I really appreciate that you are trying to help, but this is tangential to the questions that I asked in my post.

 

While mistakes are always possible, they do not explain a mildly elevated ttg for the last 5-6 months, because probabilities say she would also have been glutened by similar mistakes in the months prior, which she wasn't, because her ttg was 2.  Her teachers did not change.  Her grandparents have her while I am in the house with them.  She is not getting glutened by school or her grandparents.  We talk continuously.  They do not give her ANYTHING without discussing it with me.  They have not repeatedly glutened her and lied about it, either.   You can accept this or not.  She does not eat at other children's houses.  She does not accept food from anyone, without running it by me. 

 

She has had an elevated ttg this last time after being home with me for a month!!  If she is getting glutened, it is at home, by me.  Which is why I am on this forum, because I am anal, and I bake everything myself, and everything I use is safe.  

 

I asked very specific questions, and am hoping to get thoughts from people who have knowledge to offer regarding my questions, or experience with a similar situation.

[kareng]

Well. If you are certain she is not getting any gluten, then I would suggest you look up " the Fasano Diet". It's for people who can't get thier TTg down - before it becomes labelled as refractory Celiac.

I just like to try the simple things first, that's why I suggested she might be getting glutened somewhere. I would hate for you to jump to refractory or super sensitive if that isn't the case. From the Super Sensitives I have seen, many would not go to school, eat any thing processed, etc. it's very hard.

[kareng]

Open Original Shared Link

does she have another immune disease?

[kareng]

You might find this helpful. The Fasano diet

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

Also, from things I have read, a slightly positive tTg may mean nothing. It could be possible her symptoms are from something else? Another food or illnesses? Sorry. That isn't easy to figure out.

[shanasun]

As you say, the Fasano diet is for helping people get their ttg down.  But she HAD it down.  And judging by her symptoms, she had it down for at least 6 months.

 

She is not getting any more gluten than she did while having a negative ttg.

 

So my questions are more concerned with:

 

1.  Has anyone had the experience of their child developing a super sensitivity AFTER getting their ttg down very low.

2.  What does the DPG tell us that the ttg does not?  Why is it useful?

 

 

It is possible she is developing eisonophilic esophagitis.  Very early stages, if so.  Otherwise no other autoimmune diseases.  As I said previously, it would explain the ttg, but NOT the gluten symptoms. 

[nvsmom]

I thought I responded but my answer was lost.  Oops.

 

1.  After going gluten-free, your tTG is not going to respond quickly to minute exposures to gluten.  I doubt 1 crumb of a crumb would kick the tTG out of normal.  I saw one study that showed it took most people two weeks on a gluten challenge (~2slices of bread per day) before their tTG levels rose noticeably.

 

2.  The DGP indicates a reaction to gliadin.  First the body reacts to the gliadin, then it makes tTG to attack the intestines (where the gliadin is), and then it would make EMA to wipe out the whole top layer of the intestines (overkill).  DGP usually rises first.

 

My guesses are that she is getting more gluten than you realize, or she is just having a blip in her recovery.  Perhaps her immune system was re-stimulated for some reason?

 

Another guess is lab error.  Maybe her negative was low and that positive was high.

 

A weak positive tTG can also be caused by diabetes (T1), chronic liver disease, crohn's, colitis, thyroiditis or a serious infection.  These tend to be a weak influence though.  For example, I have Hashimoto's thyroiditis.  My tTG was over 200 at diagnosis, down to 40 something by 6 months, and at a very low 20 at 9 months.  I retested at 2.5 years and it was 4 something and they had lowered the top end of normal from 20 to 14, so my normal wasn't close to zero.  It's still measurable yet low.  I KNOW I am gluten-free, so I guess it stays measurable, but normal, partly due to Hashi's.

 

I don't know.  If she has gluten symptoms and her tTG is elevated, the most obvious answer is that she is getting gluten.  Even if you think it is tiny, less than 20ppm, it is too much for her.  You'll need to change things and be more vigilant because something is getting her.

 

Best wishes.

[greenbeanie]

Hi shanasun,

We finally got my daughter's tTG into the normal range - for the first time ever - last month. For her, it did end up being the trace gluten of less than 20ppm in some combination of three different certified gluten free flours and spices. All were certified by the GFCO. They were the only ground/powdery products that we used from facilities that weren't dedicated gluten free. I'd been trusting both dedicated facilities and certified products that came from mixed facilities. Many celiacs apparently eat those products with no problem, but unfortunately my daughter is clearly sensitive to amounts less than 20ppm, even when she was only getting a small amount of those flours mixed in with others in homemade baked goods in a gluten free kitchen. Her tTG finally dropped into the normal range about eight (?) weeks after we eliminated those products. Both of her DGP tests became negative too. Both her local GI and a celiac specialist at a children's hospital agreed that the two flours and one spice we identified and eliminated were the problem. We never found any other gluten we'd missed, and her school and other habits had not changed during this time period.

I discovered that those products had trace gluten through an independent gluten testing service that I subscribe to. I believe there may be a rule against posting info about other specific websites here, and the test results from that site are available to subscribers only, so I can't say more in detail. But with a bit of Googling, I'm sure you can find it!

Sorry if I've repeated stuff from elsewhere in this thread - I'm away from home and only had a chance to read over it briefly. Good luck!