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Member Since 01 Feb 2011
Offline Last Active Nov 14 2012 05:02 AM

Topics I've Started

Healing Strategies In Addition To gluten-free Diet?

11 November 2012 - 10:02 AM

I don't know if we're pre or post diagnosis. I have a lengthy post in the pre-diagnosis forum with our backstory. Officially my son's diagnosis is "Potential Celiac Disease". We're questioning the celiac disease theory at the moment because he isn't improving on the diet, but I wanted to pull out this question which would be based on the theory that celiac disease is the problem for him. Beyond being gluen-free, is there more we can do to help with gut healing and improving nutrient absorption? For people with a confirmed diagnosis of C.D., is there anything more that you have found helpful or necessary to recovery?

Thanks all!

Can Somebody Help Me Figure Out Where To Go From Here?

11 November 2012 - 09:42 AM

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?

Slow Healing? Or On The Wrong Track?

03 October 2012 - 01:05 PM

My almost 8 yr old has been gluten free since February this time. We've been on this journey to figure out why he is chronically anemic for most of his life. Here's what we know:
1. Without iron supplements he is anemic
2. His diet is fairly rich in iron containing foods
3. He has a mildly elevated TTG when eating gluten, and it drops when he doesn't eat gluten
4. His scope is considered normal and only a doctor with a very high level of experience in celiac disease can find anything wrong at all, and even that isn't enough to confirm celiac - only mild changes.
5. He does not react obviously to gluten in any way.

Over the past 8 months we have stuck to a fairly strict gluten-free diet - its been hard because when we go out to eat or eat at someone else's home, or even at our home (because no one else is gluten-free at this point and so CC is obviously a concern although we try to be careful) we have no feedback on if we're "doing it right". He doesn't react either way. But I believe he is pretty strictly gluten-free with only the occassional very slight CC exposures possibly. We've also been supplementing with iron to get his levels back to normal. In June he was normal with all his blood work so we cut back from twice a day to once daily iron. In September he had dropped again. Sigh. We were so hopeful that being gluten-free would fix the malabsorption issue but it seems to still be there. I don't know if we're totally on the wrong track - only sticking with celiac disease as the culpruit because of the TTG, or if we just need to give it more time, or what. How long is long enough to know what we're doing is the right thing?

I should add that it is incredibly difficult to convince him that being gluten-free is worth all of the negatives that he sees because he doesn't feel bad when he eats gluten at all. Lately he's actually been trying to convince me he feels BETTER when he eats gluten. I haven't told him yet about needing to increase iron again but I'm sure his point will be "if the diet isn't helping the iron why am I doing it". What do I tell him?

Anyone With gluten-free Kids In St. Louis

15 July 2012 - 10:25 AM

I'm looking to connect with other parents of gluten-free kids in the St. Louis area, and also perhaps find a gluten-free friend for my 7 yr old son who is feeling so left out and lonely right now. Anyone out there?

Iv Iron

15 February 2012 - 02:34 PM

My son's GI is apparently considering giving him Intravenous Iron Sucrose if his labs have not improved by the next check. :huh: Anyone been through this? Just wondering what is involved. How long does the treatment last and how often is it prescribed usually?

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