Hi all. I haven't been to this board for a long time. I used to post about my baby girl with multiple food sensitivies. Now I'm trying to figure out my 7 yr old son and could use some other brains working on it.
Here's the back story (sorry it is so long, but its been a long journey):
Developed green musousy diarrhea within a few weeks of birth and by 2 months was having streaks of blood periodically. Went to pediatrician who said it was certainly some sort of bacterial infection and referred us to a GI whose interest was random bacterial infections. After thorough testing he said it was most likely a milk protein intolerance. I eliminated milk and the blood seemed to get better but didn't go away entirely. I can't be certain I was 100% off milk though as I've learned a lot since then. I didn't explore further food intolerances at that point because I was told it would go away within a few months whether I did something or not and so I should just leave it alone. By 6 months or so the visible blood was gone but he continued to have watery and loose stools until toddlerhood. Sometime around the time he was potty training the stools became normal. However, at around 9 months he tested as anemic. We spent about a year trying to get his iron level built back up to normal and had a lot of trouble getting there and had to supplement pretty significant amounts of iron + vit C in order to finally get to the normal range. During this time we took him to a hematologist to see if there could be a bleeding disorder but they found nothing. Otherwise, though, he was a pretty healthy kid. Least likely to be sick of my 3 kids, growing well, no developmental issues, smart, well rounded,... I would say he tends to be the most energetic of my kids and borders on hyperactive but he is able to do well in school and doesn't have trouble sitting so it doesn't seem to be to the extent that it affects his life negatively. He also has a hard time winding down at night.
Once he was in the normal range we checked his blood about every year. Once or twice he was slightly anemic again but would rebound into the normal range as soon as we gave him a kids multi vit with iron for 6 weeks or so. So it was easy to get him built back up. Until about a year ago. We had stopped checking him annually but I called the doctor because he was melting down really quickly, having a lot of difficulty behaviorally and was getting colds really easily where he had previously had a pretty strong immune system. Also I noticed some bruising on his legs. Turns out he was anemic again - mildly but more than he had been up to that point. We went back to the GI who did a work up which included blood work and eventually a colonoscopy and endoscopy. Other than a "moderately" elevated tTG (48, normal being <20) nothing came of any of that. We've been supplementing him with iron for the past year and he still is not in the normal range. He will sometimes get borderline normal but the slightest slacking off on major supplementation will make him drop back down. A multi with iron doesn't do the trick anymore. We are doing 45mg of iron 2-3 times daily now. That seems to be enough but I hate supplementing that much.
The TTG being elevated convinced us that gluten might be the issue although the GI did not think so. We tried him off gluten for 2 months but there was no obvious symptoms that changed on or off gluten. We've been monitoring the TTG over the course of the past year and it has fluctuated but not directly correlated with him being on or off gluten. He dropped form 48 to 22 before we ever eliminated gluten, then down to 14 off gluten, then back to the 30's where he's been holding steady for the past 6 months or so.
Still convinced that gluten was the culpruit, I took him to a major celiac disease center and had him seen by the head of the center. They ran some more tests - a more thorough celiac panel, thyroid testing, additional nutritional tests, and did a consultation on the biopsies from his scope. The pathologist who looked at them I was told is one of the best of the best at finding early signs of celiac disease. The report came back totally normal. The other blood tests were all normal.
So here is what I need. I need ideas of what else could explain this. I know many of you will be tempted to say its still gluten but please take a minute to consider what if it isn't. What else could it be? I get the urge to indict gluten - I have it too. But I'm trying to think beyond gluten for a minute. The only piece of evidence pointing us to gluten is a test that could mean something else entirely.
Here's what we know - the elevated TTG indicates an inflammatory or autoimmune reaction somewhere in his body. The persistant anemia indicates he's either loosing microscopic blood or he his gut is inflammed and not absorbing iron well. So it seems logical to me to conclude he has inflammation in his GI tract that's affecting absorption. Pretty much any food intolerance could be causing that, right? The theory has been raised that it could be an ongoing milk protein intolerance that never resolved from infancy. However, since we never got to baseline despite eliminating milk it seems to me milk isn't the whole story. We have also done milk and soy eliminations with him in the past and not seen any change.
So where would you go next? What would you think? What questions do you have?
What did the Celiac Center say?
I guess I am wondering how, with a tTG of 48 (which is not moderately high, that's HIGH high) why they are saying it isn't Celiac esp. if he did respond (vis the tTG levels) to the GF diet.. Also, how long was he back on gluten before the scope?
He was never off gluten before the scope. We did the scope a year ago at the same time as the initial discovery of an elevated TTG.
The celiac doc initially said he thought it was about a 70% chance that he would diagnose my son with celiac. I haven't gotten his official final recommendations yet, but he wrote a letter to my pedi saying that if the re-examination of the scope and the additional blood work he did didn't show anything that his next thought would be a milk protein intolerance causing microscopic blood loss, so I guess that's where we are.
Both he and the GI we were working with locally said the elevated TTG isn't high enough to be specific for celiac. The TTG dropped by over half (for a total of 26 points) in a 3 month period with no dietary changes at all. Then it only dropped another 8 points off gluten. So it seemed to be trending downward anyway at that time.
That is perplexing. So thyroid, liver, cardiac are all fine as well, right. Do they think it could be a BIG lab error? I just have no clue. We are in a bit of a Celiac conundrum at this time as well so I know how frustrating it is! I wold post over at Celiac.com. There are some people there that may be able to point you to something to help make head or tails of this.
Hang in there!
Thanks!. Yes, everything else seems fine. I don't think its a lab error. There have been 4 or 5 different TTGs over the course of the past year and 2 different labs involved. I've been over on celiac.com but they are all convinced its gluten, and maybe it is. But if the celiac expert went from being 70% convinced to deciding maybe milk is actually the problem I'm feeling the need to consider other options.
I know you want other considerations but really, I don't see anything else that fits.
Have you read Dr. Fasano's newer guidelines on Celiac? There are 5 criteria and he says if there are 4 of the 5, it's Celiac. Is Dr. Fasano who you are seeing or someplace else?
Has he had the gene test? What was that?
Yes, I saw that. I was hoping to get the full article but didn't want to pay $35 or something like that when I was looking for it. Dr. Fasano is not the doc we're seeing. I had called to make an appt with him and his nutritionist suggested the Chicago CDC which is much closer for us so we went there at her recommendation. We haven't done the gene testing.
Its strange, because all the doctors we've talked to (the 2 GIs and our pediatrician) say the elevated TTG just means inflammation somewhere in the body which of course could be caused by any number of other things besides gluten. But the online community generally is certain that it indicates celiac and nothing else. Once in awhile I run into someone who agrees with the docs but its rare.
On the bottom of page 42 it states the 5 things.
I am really surprised they haven't done the genetic test. I know it's $$$ but really, with the wacky numbers I would thing that can at least rule out Celiac to a degree (there are reports of those with it and no gene but it isn't common).
We are in the process of finding the reason for still increased ttg's after 18 months STRICT GF. So we are looking into all the "other" possibilities. My DS has elevated TSH right now so we are looking into thyroid issues. It's so frustrating :( More hug!
Your story sounds a lot like a mom I met last week over on celiac. I wonder if we've bumped into each other before.
Good luck with the thyroid thing. Yes, very frustrating. It would be nice if these kids came with more specific instructions.
I'm hoping to get the docs actual recommendations one of these days ( I guess that's the price you pay for going to the guys doing the research and traveling around to conferences and whatnot - hard to nail them down in the clinic). Maybe he will suggest the gene testing, IDK.
Thanks for the link.
lol Very possible :) Different name there but starts with the same letter ;)
Yes, instructions! It would be nice. Please update here if you figure anything out! I think all these little clues we each leave can help others out!
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