I post here off and on so if anyone remembers our story I apologize for being repetitive, but here's the backstory for those who don't:
I have an 8-yr-old son who has suffered with iron deficiency anemia his entire life. From infancy he had diarrhea, at times tinged with blood. He was worked up by GI then and they said it was a food intolerance (he was breastfed). I had already eliminated dairy with little effect. The recommendation was to leave him alone and he would outgrow it, which he eventually did. But by 9 months he was anemic (thought to be because of the blood loss in his stool). We started iron supplements and found that it took an exceptionally high dose to get him to respond. Back to GI for another work up which included testing for blood disorders and Celiac. Nothing came up and eventually his iron levels were back in the normal range so we thought all was okay and left him alone. A couple more times through the years he would be mildly anemic but respond quickly to iron supplements so no further testing. Then about 2 years ago he once again had trouble getting his levels back from being anemic. Over the past 2 years we have had him under the care of 2 differenct GI docs - both highly respected, directors of GI programs at major children's hospitals affiliated with top medical schools. He was scoped and it was negative for anything that would explain this. His only GI symptoms are constipation and occassional stomach aches both of which are not affected by gluten-free diets. But he's been on fairly high doses of iron this whole time which could explain the stomach upset.
For the past year (well really for some time before that, but especially the past year) we have been operating under the theory that celiac was the most likely culpruit. His only positive blood work was an elevated tTG (he's had results in the mild and the moderate range). The tTG goes to the normal range when he is on a gluten-free diet.. Also, when the second GI reviewed the results of the scope that team (which is at a celiac center so probably very knowledgable re: celiac but also maybe biased) felt there were some very early signs of damage consistent with celiac disease - not enough to diagnose but enough to be suspicious.
He's now been on a strict gluten-free diet for 9 months (no one else at home is gluten-free, fwiw). We've seen no improvement in his GI symptoms (but again that could be just because of the iron supplements). We have been unable to wean him off the supplements or even decrease his dose because his iron levels are still dropping off supplements. We find ourselves seriously questioning the celiac disease theory. I would think if the damage was so mild that it wasn't even detected by the first team of docs it wouldn't take this long to heal enough to be able to wean off supplements.
We're going back to the celiac center in a few weeks and I need help thinking about where to go from here. We are very reluctant to keep him gluten-free for his entire childhood if it doesn't seem to help anything and we had no real strong evidence there was ever celiac disease to begin with.
So I guess what I'm looking for is this: when you read this story what do you think? What is your theory on why we are in the exact same position 2 years later despite all this testing and the diet and everything? Does any other reason for the deficiency come to mind? In the past many people have been convinced that celiac disease is the problem based only on the elevated tTG, but we've been told by the docs that this isn't enough evidence on its own. Does the lack of response to a gluten-free diet change your opinion?
I have an 8-yr-old son who has suffered with iron deficiency anemia his entire life. From infancy he had diarrhea, at times tinged with blood. He was worked up by GI then and they said it was a food intolerance (he was breastfed). I had already eliminated dairy with little effect. The recommendation was to leave him alone and he would outgrow it, which he eventually did. But by 9 months he was anemic (thought to be because of the blood loss in his stool). We started iron supplements and found that it took an exceptionally high dose to get him to respond. Back to GI for another work up which included testing for blood disorders and Celiac. Nothing came up and eventually his iron levels were back in the normal range so we thought all was okay and left him alone. A couple more times through the years he would be mildly anemic but respond quickly to iron supplements so no further testing. Then about 2 years ago he once again had trouble getting his levels back from being anemic. Over the past 2 years we have had him under the care of 2 differenct GI docs - both highly respected, directors of GI programs at major children's hospitals affiliated with top medical schools. He was scoped and it was negative for anything that would explain this. His only GI symptoms are constipation and occassional stomach aches both of which are not affected by gluten-free diets. But he's been on fairly high doses of iron this whole time which could explain the stomach upset.
For the past year (well really for some time before that, but especially the past year) we have been operating under the theory that celiac was the most likely culpruit. His only positive blood work was an elevated tTG (he's had results in the mild and the moderate range). The tTG goes to the normal range when he is on a gluten-free diet.. Also, when the second GI reviewed the results of the scope that team (which is at a celiac center so probably very knowledgable re: celiac but also maybe biased) felt there were some very early signs of damage consistent with celiac disease - not enough to diagnose but enough to be suspicious.
He's now been on a strict gluten-free diet for 9 months (no one else at home is gluten-free, fwiw). We've seen no improvement in his GI symptoms (but again that could be just because of the iron supplements). We have been unable to wean him off the supplements or even decrease his dose because his iron levels are still dropping off supplements. We find ourselves seriously questioning the celiac disease theory. I would think if the damage was so mild that it wasn't even detected by the first team of docs it wouldn't take this long to heal enough to be able to wean off supplements.
We're going back to the celiac center in a few weeks and I need help thinking about where to go from here. We are very reluctant to keep him gluten-free for his entire childhood if it doesn't seem to help anything and we had no real strong evidence there was ever celiac disease to begin with.
So I guess what I'm looking for is this: when you read this story what do you think? What is your theory on why we are in the exact same position 2 years later despite all this testing and the diet and everything? Does any other reason for the deficiency come to mind? In the past many people have been convinced that celiac disease is the problem based only on the elevated tTG, but we've been told by the docs that this isn't enough evidence on its own. Does the lack of response to a gluten-free diet change your opinion?
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