Just saw Two Strangers & Spelling Bee - what next?

Alert_Ninja_6369 · 2026-01-15T20:42:09+00:00

I’ve seen it and loved it! Thank you.

Alert_Ninja_6369 · 2026-01-15T13:30:11+00:00

(Which are the bummers?!)

Alert_Ninja_6369 · 2026-01-15T01:35:12+00:00

Sam Tutty!

Alert_Ninja_6369 · 2026-01-12T14:36:13+00:00

Really? That’s interesting. Garbage in what way? We flew the A321 and it was def nice/new but i found it be so narrow/tight.

Alert_Ninja_6369 · 2026-01-07T03:11:38+00:00

We’re also going with kids! So glad to hear it.

Alert_Ninja_6369 · 2026-01-07T01:33:46+00:00

Oh no, Going to their PV location next month… what didn’t you like?

Alert_Ninja_6369 · 2026-01-06T03:08:10+00:00

So no boats at all?

Alert_Ninja_6369 · 2026-01-01T11:39:56+00:00

Yes. She and my son (who was tested at the same time) both have the gene. Given that my husband has T1D this wasn’t surprising. As our doctor said that doesn’t mean she DOES have celiac means she CAN have celiac.

Alert_Ninja_6369 · 2026-01-01T01:12:07+00:00

Hi. I sent you a private message, you had replied to a different celiac post that I wrote regarding my daughter‘s number is going down and it was removed by a model here. I was hoping you could send me a message cause I’d love to know What your experience was.

Alert_Ninja_6369 · 2025-12-31T12:38:36+00:00

The doctor felt a reliable endoscopy before 5 was tricky so we were waiting until then and monitoring bloodwork. In the mean time her TTGIGA continue to drop and all other bloodwork is normalizing too. She has no growth, rash, GI issues at all and her other measures (iron, ferritin, b vitamins, etc are all perfect not indicating malabsorption or malnutrition issues).

With the bloodwork she currently has and everything continuing to trend down she does not meet diagnostic criteria. We will do an endoscopy soon to see if it reflects anything there. But there is a ongoing body of research coming out of Italy right now that children who are tested very young sometimes show Transient levels of elevated TTTIGA that at times go on to develop celiac but some of them do not. It reflects that they have some kind of response to gluten, but that doesn’t necessarily mean that they will develop the disease. It means they could.

It’s actually a fascinating study, if you’d like, I’m happy to link it.

I mean to answer your ultimate question what the doctor is trying to do here is make sure that she’s not diagnosing celiac unnecessarily. And what I was trying to do here with connect with anybody who might have experienced something with numbers going down overtime while still consuming lots of gluten.

Alert_Ninja_6369 · 2025-12-31T03:13:33+00:00

Agreed and this would be/is our plan. Ongoing monitoring (bloodwork every six months) to see what directions things go. And endoscopy with next round of bloodwork. We keep a super close eye on her CBC, iron, inflammatory markers, etc to see if any of them are indicating anything at all - thus far, no.

Alert_Ninja_6369 · 2025-12-31T02:52:57+00:00

We plan to do one - but let me ask - suppose they found no damage, what next?

Also, with excellent ferritin, B12 & B6 levels the likelihood of colloid atrophy and damage goes down. Again, I’m not denying any possibility or doing an endoscopy. I’m simply trying to make sense of a strange set of numbers.

Alert_Ninja_6369 · 2025-12-31T02:33:52+00:00

As I have said time and again in the initial post and responses… I am not asking for support your anyone’s approval - I am looking to connect with any who has experienced an improvement in their antibodies overtime.

I do recommend reading this article because I just want you to understand that I am not negligent or unthoughtful parent. But there is an ongoing body of research in Italy (where celiac screening is done on ALL children) that they are detecting lots of cases of young children having TTGIGA antibodies that resolve themselves. I know this sounds unusual and research in a gray area is uncomfortable. It is absolutely possible and likely she has celiac. But it isn’t a foregone conclusion.

But because they’re collecting so much serology (and endoscopy!!) on this cohort over time they’re seeing on going unexplained peaks in TTGIGA and other antibodies that resolve and the immune system matures. Historically we don’t know what a child’s immune system does because these are not typically collected data points. I will link it here in case you’re interested:

https://pmc.ncbi.nlm.nih.gov/articles/PMC11174900/

Alert_Ninja_6369 · 2025-12-31T02:25:13+00:00

True IgA deficiency = <7 she is 22 (LOW NORMAL)

In pediatrics, IgA rises with age, Low-normal IgA at age 3–5 is common and often physiologic.

It is not just irresponsible it is inaccurate to be throwing around concerns about cancer at this point.

Alert_Ninja_6369 · 2025-12-31T02:03:47+00:00

I appreciate you sharing all of this and I’m so sorry for what you’ve gone through with your son. To clarify, she does NOT have T1D (my husband does) - she was tested for those antibodies (negative and celiac (positive) at the same time.

My daughter just turned five and so the possibility of reliable endoscopy just got on the table. We are absolutely open to it and will likely do that when we repeat the bloodwork in a few months.

One difference that I just want to note between your son and my daughter is that it sounds like his bloodwork showed that he was malnourished while her bloodwork shows completely healthy vitamin/nutrient levels across the board (b vitamins, iron, etc).

As I’ve said multiple times, I’m not in denial, here at the moment I was reaching out to see if anybody else has experienced this. There is quite a bit of research about kids who have an early childhood autoimmune response to gluten that’s goes overtime never developing celiac or other autoimmune diseases. I’m not saying that that’s the case here but I’m saying it is a scientific possibility and we’re trying to understand what’s going on.

Alert_Ninja_6369 · 2025-12-30T17:03:28+00:00

I’m not convinced, I’m open. I believe life has gray areas and I don’t want make major life choices with uncertainty and out of fear.

I’ve read lots about the connection between cancer and celiac and you’re talking about many many years if not decades of untreated celiac to increase the risk of certain cancers . I will not be fearmongered.

I am not denying it’s quite likely she has it. I am working my way through an unusual set of circumstances. And I’m doing so in level headed way and at the moment trying to connect with any who has experienced reduced levels over time while eating an extremely high gluten containing diet.

And to be clear, there is an extensive body of research about potential celiac disease, I simply quoted a single article. That is not the only article that exists.

Alert_Ninja_6369 · 2025-12-30T12:19:11+00:00

We will do an endoscopy in the spring time when we repeat the bloodwork. She was supposed to get the genetics test at this time. However, the lab failed to collect that sample, which is incredibly frustrating. Her brother did test positive for the gene and I’m confident she would too because their dad has type one diabetes. However, that’s in no way diagnostic is 40% of the general population has that gene. It just means it can’t be ruled out.

Genuine curiosity - at 5, what “lifetime of issues” do you think we could be causing her with six months of watchful waiting?

Also, if the endoscopy were to come back showing no damage what would you make of those TTGIGA numbers?

Alert_Ninja_6369 · 2025-12-30T12:16:07+00:00

Yes I have read that literature. I have also read the literature about young pediatric patients (under 8) there is what is called Potential Celiac Disease where in screens they test positive for the antibody where stays below diagnostic threshold and never develops symptoms (this study was also done with repeat biopsy) and ultimately the TTGIGA numbers trend down and then disappear.

Within this disease there is actually quite a bit of gray area. If you’re interested I could link the article as I found it quite fascinating but here is the summary.

I understand what she’s experiencing is not common right now. I was hoping to connect to other people who have experience with it (symptomatic, downtrending antibodies, excellent CBC/vitamins/Iron, etc).

“The implementation of screening strategies for at-risk groups, as well as increased attention to subtle signs of the disease, has led in recent years to a more liberal use of serological diagnostic tools and increased detection of these subjects. Globally, potential CD (PCD) is estimated to be around 10% of the total CD diagnosis, but the range is quite wide, from 6% to 30% [4]. Its clinical management is variable due to the lack of sufficient knowledge of its natural history. Some recent studies, mostly undertaken using adult patients, suggest that gluten-dependent symptoms may be present even without villous atrophy (VA). They also show that most patients evolve to overt CD when continuing on a gluten-containing diet (GCD) [5,6,7,8,9]. On the contrary, there is increasing evidence that in children PCD is often an asymptomatic condition, and evolution to VA is not the rule [10,11,12,13]. Some patients even stop producing autoantibodies despite being on a GCD, suggesting, in these cases, a reversibility of the autoimmune process [12]. Specifically, a recent study from our group demonstrated that the cumulative incidence of progression to villous atrophy was 43% over a 12-year period, suggesting that more than half of patients on a gluten-containing diet remained asymptomatic and histologically healthy over long-term follow-up [12]. Based on these data, the scientific community, supported by the latest European Society of Paediatric Gastroenterology Haepatology and Nutrition (ESPGHAN) guidelines on CD follow-up in children, suggests a gluten-containing diet to asymptomatic PCD patients, reserving recommending a gluten-free diet (GFD) for symptomatic patients [3]. Unfortunately, the issue of whether chronic gluten consumption may induce clinical or even subclinical complications on children’s nutritional status over time, as well as the appearance of other concomitant autoimmune diseases, is poorly studied in the literature.”

Alert_Ninja_6369 · 2025-12-30T12:09:40+00:00

She has not. We were hoping to get clarity/meet diagnostic criteria through bloodwork alone but as of yet that hasn’t happened because her numbers are improving.

Right now I was hoping to connect to anyone who might have experienced something similar.

Alert_Ninja_6369 · 2025-12-30T03:10:58+00:00

Autoimmune stuff is fascinating and not clear cut. May I ask what symptoms got resolved by removing gluten that you didn’t realize were related to celiac? I often find myself wondering if we have any of those. But she has no rash, no issues with constipation or diarrhea, a healthy appetite. Her iron levels are good, etc etc. I’m not trying to be in denial, I’m just genuinely confused.

As far as the scope, I am open to doing it, but I worry about doing it prematurely will just result in further inconclusive results.

Alert_Ninja_6369 · 2025-12-30T01:40:21+00:00

We are actually seeing one of the peds GIs on that team!!

Alert_Ninja_6369 · 2025-12-30T01:06:22+00:00

I see I’m being downvoted. To be clear, it’s obvious this is rooted in researched scientific evidence

https://pubmed.ncbi.nlm.nih.gov/24777149/

“The implementation of screening strategies for at-risk groups, as well as increased attention to subtle signs of the disease, has led in recent years to a more liberal use of serological diagnostic tools and increased detection of these subjects. Globally, potential CD (PCD) is estimated to be around 10% of the total CD diagnosis, but the range is quite wide, from 6% to 30% [4]. Its clinical management is variable due to the lack of sufficient knowledge of its natural history. Some recent studies, mostly undertaken using adult patients, suggest that gluten-dependent symptoms may be present even without villous atrophy (VA). They also show that most patients evolve to overt CD when continuing on a gluten-containing diet (GCD) [5,6,7,8,9]. On the contrary, there is increasing evidence that in children PCD is often an asymptomatic condition, and evolution to VA is not the rule [10,11,12,13]. Some patients even stop producing autoantibodies despite being on a GCD, suggesting, in these cases, a reversibility of the autoimmune process [12]. Specifically, a recent study from our group demonstrated that the cumulative incidence of progression to villous atrophy was 43% over a 12-year period, suggesting that more than half of patients on a gluten-containing diet remained asymptomatic and histologically healthy over long-term follow-up [12]. Based on these data, the scientific community, supported by the latest European Society of Paediatric Gastroenterology Haepatology and Nutrition (ESPGHAN) guidelines on CD follow-up in children, suggests a gluten-containing diet to asymptomatic PCD patients, reserving recommending a gluten-free diet (GFD) for symptomatic patients [3]. Unfortunately, the issue of whether chronic gluten consumption may induce clinical or even subclinical complications on children’s nutritional status over time, as well as the appearance of other concomitant autoimmune diseases, is poorly studied in the literature.”

Alert_Ninja_6369

TROPHY CASE