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I think the other piece I didn't mention that has us questioning is that the GI doc who we worked with up until last year told us he does not have celiac, and that we should not eliminate gluten from his diet. He proposed supplementing with iron long-term and no further attempts to find the cause. We weren't happy with that plan and so we decided to take my son to the celiac disease center for a second opinion and even they were not able to say to us "yes, gluten is definitely the problem." So it feels like we're already operating on a hunch. It is so very frustrating not to ever have a sign that we're on the right track.
Its not so much that a few people online have reported a bad reaction. Its that every description on medical sites lists a serious anaphalactic reaction to the infusion as about the only side effect. We'll have to talk about it with the doctor because I don't know how common it is but we were hoping we could accomplish what we needed without taking on that risk. Maybe we need to reconsider.
No, we've not done a bone marrow biopsy or had his stomach acid measured, I don't think. How do they check the stomach acid?
He is not terribly anemic. I think the lowest he has gotten has been a hemoglobin in the high10's. Its enough that we can tell he isn't feeling well - his behavior gets terrible, lots of tantrums, etc and so we have always had him checked and started the supplements before it dropped lower than that. On supplements his hemoglobin is pretty much normal but his iron stores have a really hard time getting back to normal. We give him 45mg of iron twice a day if we can get him to take it and when we recently dropped to once a day the numbers started to drop again.
Because nothing is better on a gluten free diet, and the docs (including the celiac specialist) have all said the TTG isn't enough to convince them that he definitely has celiac or that gluten is definitely the problem with his iron absorption.
We don't have any evidence that he is low in B vitamins. When tested his B's have all been normal, and the MCV being low would suggest B vitamin deficiency is not the problem. We did have him on a multi vit with B's though but it made it even harder to get enough iron into him so now we're just doing iron. The taste issue is a major problem and he can't yet swallow large pills.
Well, there's the level of invasiveness with an infusion - needle pokes and time spent doing the infusion. But more concerning to me is the risk of a severe drop in blood pressure which can be life threatening in some situations. It sounds, from my reading, that procedures have improved so that this is not happening as often but it is scary to me none-the-less. I had read one forum where several people had been through the infusions and at least a handful of them had had a bad reaction at some point.
Yes, the iron supplement is definitely gluten-free. There could be CC in the house but we try to be good about it. We never use a toaster with his food, always use a plate to prepare his sandwiches, most things get run through the dishwasher even if they are hand washed first, separate peanut butters and squeezable jelly, etc. He almost always takes his lunch to school and we rarely eat out so if he has been glutened through one of those ways I think it would be rare - hopefully not enough to seriously limit his progress. There could be crumbs he encounters at school and home that get on his hands I suppose. IDK if that would be enough to keep him from healing.
You share my worry that maybe we are so locked in to this celiac thing that we're missing something else. I don't know what else, non gut related, we could be missing though. He's been seen by hematology and they haven't been able to find anything.
Let's see, MCV has been low along with Hemoglobin, Hematacrit, total iron, ferratin, retic count, and MCH. We've tested his vit B in the past and it was normal. RDW-CV has been high.
He is not strictly whole foods. Just gluten-free diet at the moment. I can't remember if we've ever tried him soy free. I think maybe we did a dairy/ soy free trial at one point but probably not long enough to see a change in absorption.
Bubba's mom: we have not tried all grains. I agree that he obviously either has malabsorption or a bleed. The previous GI was leaning toward it being a bleed although they did not find anything on his scope and there is not blood in his stool when we've tested ever since infancy. If he had hemerhoids I would think they would have seen that on his scope but I suppose they could have shown up since. But in any case I don't think that could explain the primary iron deficiency.
The celiac disease center doc has suggested that if we can't make the supplements work an infusion would be our next step. We are reluctant to do that because of the risks but we also have a hard time sometimes getting him to take the supplement because it makes him feel so rotten.
I'm not opposed to trying a different or extended elimination diet, expect that we have the same issue with any other food that we do with gluten - being that the kid doesn't seem to have any obvious symptoms other than ones that are probably more because of the supplement than the foods. So we really have nothing to track other than his iron levels and that will take a lot of time and there are so many variables I think it will be really hard to know what made the difference. For example, if we try eliminating soy next and 3 months goes by and his iron levels are okay so we take him off iron and he stays stable does that mean it was the soy, or did his body just need a few more months to heal from the gluten?
Edited to add: which is not saying I am ruling out more dietary changes - I just need help figuring out how I would know if they are effective without taking a year per food.
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?
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?
Hi there. Thanks! No acid blocking meds. I'll try to dig up his blook work soon. We generally give his iron with fruit juice high in Vit C. He does absorb the supplements, just can't maintain if we try to wean him off. We'd all like him to be off supplements at some point and I thought the gluten-free diet was the answer but not so sure now.
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?
The doctor decided what to test for. We didn't see the dietician until later after it was determined we should go back on a gluten-free diet. She mostly answered all the questions about management of the diet itself and how to make sure you are getting the right nutrients, etc. She also worked with us on foods to promote iron absorption since that was our main issue.
I believe elevated lymphocytes can be present on scope in breastfed children because they are breastfeeding and not as an indication of anything abnormal, for what its worth. I couldn't confirm that on a quick Google serach but from memory that's what I recall. Not sure how long they stick around after a child is weaned.