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

[October3]

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?

[frieze]

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?

What is his MCV? That is part of a CBC, ie, Complete Blood Count. if it is high, would suggest a B 12 def. Is this kiddo on a strictly whole foods diet? If not, that would be my next thought. No soy for sure!

[Bubba's Mom]

Have you tried taking him off all grains? Some of us just don't seem to tolerate any at all.

The loss of iron would suggest either malabsorption..or a bleed somewhere? If your son takes iron supplements it will make his stool hard, and can cause hemerhoids in the colon. When the stool passes through, it could cause them to bleed...causing a loss of iron. It's a vicious cycle.

Maybe ask for an iron infusion and take him off suppplements to see if that helps?

[October3]

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.

[AandGsmomma]

Have you checked to make sure the iron supplement is gluten free? It sounds he has more than one thing going on here. I would say he is celiac, but something else is causing the issue with his iron level. Is there cross contamination going on if the whole house is not gluten free. Is he getting gluten at school? I would have the doctors look at every square inch looking for issues that could cause anemia. Maybe they are missing something being so focused on his gut.

[October3]

Have you checked to make sure the iron supplement is gluten free? It sounds he has more than one thing going on here. I would say he is celiac, but something else is causing the issue with his iron level. Is there cross contamination going on if the whole house is not gluten free. Is he getting gluten at school? I would have the doctors look at every square inch looking for issues that could cause anemia. Maybe they are missing something being so focused on his gut.

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.

[rosetapper23]

With celiac, oftentimes the first area to be damaged is the area where iron is absorbed, and, therefore, iron anemia can be the first or foremost symptom. Your child is still young, so it's not unusual for the doctors to find very little damage. Since iron makes him constipated and gives him stomach distress, I agree that infusions for a little while might help you discover whether or not the gluten-free diet is helpful to him. Until then, you won't know if it's the iron supplement or celiac that is the culprit. You mention a risk with the infusions--I wonder what that might be (?). I took iron infusions for years and never felt that I was at risk. Some people's intestinal linings never properly heal, and they need these infusions in order to keep their iron at normal levels. Hopefully, your son's will heal and he'll eventually no longer need any iron support at all.

[October3]

With celiac, oftentimes the first area to be damaged is the area where iron is absorbed, and, therefore, iron anemia can be the first or foremost symptom. Your child is still young, so it's not unusual for the doctors to find very little damage. Since iron makes him constipated and gives him stomach distress, I agree that infusions for a little while might help you discover whether or not the gluten-free diet is helpful to him. Until then, you won't know if it's the iron supplement or celiac that is the culprit. You mention a risk with the infusions--I wonder what that might be (?). I took iron infusions for years and never felt that I was at risk. Some people's intestinal linings never properly heal, and they need these infusions in order to keep their iron at normal levels. Hopefully, your son's will heal and he'll eventually no longer need any iron support at all.

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.

[Takala]

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.

Not sure why you are questioning the celiac disease theory, if the tTG changes when he is on the gluten free diet.

He could have additional food intolerances. He could be sensitive to cow dairy, all dairy, soy, even the gluten free oats. I had to quit using a certain brand of gluten free flours because of the oats issue about 10 months ago, but it made a huge difference for me, and that started bothering me in my eighth year avoiding gluten, which I didn't expect. The soy and dairy would be my top 2 suspects to try eliminating at this time.

If the issue is he doesn't like the iron supplement, then you need to deal with that, either by, trying a different one, cutting it back a little, giving it to him 2x a day at half the dose or experimenting at different times of day to see when it is more tolerated. Also, I use dedicated cast- iron pans to cook a lot of my food in, because every little bit of iron helps when you are fighting this situation. I clean them with water, a paper towel, and cider vinegar and baking soda - no soap. Blackstrap molasses is also a good source of iron, and you can put that into all sorts of different things, even homemade baked goods, smoothies, on jelly sandwiches w/ pb, etc. When I was battling this, I actually developed a taste for it. It does not replace an iron supplement, but it helps.

I am assuming he's getting a multivitamin with a B complex ? All these vitamins and minerals interact. If he is low in the B vitamins, THAT is a cause of not being able to absorb iron and can cause anemia.

[October3]

Not sure why you are questioning the celiac disease theory, if the tTG changes when he is on the gluten free diet.

He could have additional food intolerances. He could be sensitive to cow dairy, all dairy, soy, even the gluten free oats. I had to quit using a certain brand of gluten free flours because of the oats issue about 10 months ago, but it made a huge difference for me, and that started bothering me in my eighth year avoiding gluten, which I didn't expect. The soy and dairy would be my top 2 suspects to try eliminating at this time.

If the issue is he doesn't like the iron supplement, then you need to deal with that, either by, trying a different one, cutting it back a little, giving it to him 2x a day at half the dose or experimenting at different times of day to see when it is more tolerated. Also, I use dedicated cast- iron pans to cook a lot of my food in, because every little bit of iron helps when you are fighting this situation. I clean them with water, a paper towel, and cider vinegar and baking soda - no soap. Blackstrap molasses is also a good source of iron, and you can put that into all sorts of different things, even homemade baked goods, smoothies, on jelly sandwiches w/ pb, etc. When I was battling this, I actually developed a taste for it. It does not replace an iron supplement, but it helps.

I am assuming he's getting a multivitamin with a B complex ? All these vitamins and minerals interact. If he is low in the B vitamins, THAT is a cause of not being able to absorb iron and can cause anemia.

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.

[frieze]

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.

Have they done a bone marrow biopsy? The RDW # being up means there is greater variance in Red Cell Width, then is considered normal. This commonly occurs d/t bleeding; if there is no bleeding, then I would wonder about the production end of things.. How anemic is he? Also, has his stomach acid been measured? perhaps it isn't sufficient?

[IrishHeart]

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.

My Dad had frequent blood transfusions for severe anemia and tanked hematocrits for 8 YEARS at Lahey Clinic outside of Boston. I am talking sometimes 2X a month. No problems at all.

Please do not let the need for a transfusion deter you because a few people had a "bad reaction"...this is a very non-specific description we hear on here all the time.

If your child needs one, then maybe you should do it. If you trust these doctors, they will monitor him closely, I am sure.

IMHO

Just remember...none of us are doctors on c.com.... okay? we are just offering opinions.

[MitziG]

I think the celiac dx is dead on, especially with the ttg dropping on a gluten-free diet. But there is more going on, and unfortunately, it isn't going to easily reveal itself. My 8 yr old went thru a lot of the same, anemia, constant stomach pain, got a celiac dx but didn't improve much for first year. I cut out all dairy and wham, instant difference. So...could be dairy, could be soy, could be other grains...and unfortunately, you are probably going to have to do the searching yourself to find out. But do NOT abandon the gluten-free diet. You really are on the right track there, you just have to find the missing puzzle piece!

[October3]

Have they done a bone marrow biopsy? The RDW # being up means there is greater variance in Red Cell Width, then is considered normal. This commonly occurs d/t bleeding; if there is no bleeding, then I would wonder about the production end of things.. How anemic is he? Also, has his stomach acid been measured? perhaps it isn't sufficient?

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.

[October3]

My Dad had frequent blood transfusions for severe anemia and tanked hematocrits for 8 YEARS at Lahey Clinic outside of Boston. I am talking sometimes 2X a month. No problems at all.

Please do not let the need for a transfusion deter you because a few people had a "bad reaction"...this is a very non-specific description we hear on here all the time.

If your child needs one, then maybe you should do it. If you trust these doctors, they will monitor him closely, I am sure.

IMHO

Just remember...none of us are doctors on c.com.... okay? we are just offering opinions.

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.

[October3]

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.

[GFinDC]

Hi October3,

I think the ttg numbers dropping on the gluten-free diet means something. If gluten was not causing a reaction the ttg shouldn't change right? How do his doctors explain that change?

I assume when you say he was scoped that you mean he had an endoscopy, not a colonscopy. Having both would be a good idea. But, an edndoscopy can only reach about 5 feet of the small intestine, and there are close to 22 feet in adults. So lots of unexplored territory there. Camera/capsule methods can see the whole intestine and take pictures along the way. But they can't get biopsy samples. So just because they saw little damage in the endoscopy does not mean there is not more damage further along.

I agree with the suggestions to remove dairy and soy from his diet. Both of them can cause damage to the gut. And recovery from soy and dairy can take several weeks or more, so don't give up on it right away. Another fairly common food intolerance is nightsahdes, potatoes, tomatoes, peppers and eggplant. Some of reacto corn or eggs too. Leaky gut can cause intolerances to any food out there.

Most chocolate has soy and dairy in it, so you might try carob on him instead. You can get carob powder in health food stores. I know dairy makes me bleed, so it can do that.

The article linked below could be the reason he isn't testing positive on celiac disease tests.

Non celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

[frieze]

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.

Hmm, if his H+H are that high, they may not be interested in doing a biopsy (an invasive,potentially painful procedure) stomach acid would be tested by "dropping" an NG tube for a specimen....probably are other ways. Do you make sure to NOT give the iron within 2 hours of any calcium rich food/supplement? perhaps including Vitamin C with the iron would help? not the buffered kind!

[October3]

Hi October3,

I think the ttg numbers dropping on the gluten-free diet means something. If gluten was not causing a reaction the ttg shouldn't change right? How do his doctors explain that change?

I assume when you say he was scoped that you mean he had an endoscopy, not a colonscopy. Having both would be a good idea. But, an edndoscopy can only reach about 5 feet of the small intestine, and there are close to 22 feet in adults. So lots of unexplored territory there. Camera/capsule methods can see the whole intestine and take pictures along the way. But they can't get biopsy samples. So just because they saw little damage in the endoscopy does not mean there is not more damage further along.

I agree with the suggestions to remove dairy and soy from his diet. Both of them can cause damage to the gut. And recovery from soy and dairy can take several weeks or more, so don't give up on it right away. Another fairly common food intolerance is nightsahdes, potatoes, tomatoes, peppers and eggplant. Some of reacto corn or eggs too. Leaky gut can cause intolerances to any food out there.

Most chocolate has soy and dairy in it, so you might try carob on him instead. You can get carob powder in health food stores. I know dairy makes me bleed, so it can do that.

The article linked below could be the reason he isn't testing positive on celiac disease tests.

Non celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

No, he had an endoscopy and colonoscopy together. They didn't want to have to go back later and scope again if nothing showed up on the endoscopy.

Thanks for the link. Going to read it now...

[mommida]

Can you go over the test results again and check for eosinphil counts? (This should also be on the pathology report of the biopsies taken.) It is more of a "new hard to diagnose" catagory of eosinophilic gastro. disorder. There is now a proven link between Celiac and eosinophilic esophagitus. This could explain some improvement on a gluten free diet diet , but not a full recovery. In fact the symptoms in a Celiac were nearly identical to a gluten reaction, but it gets bloody. (depending on where the eosinophils are causing damage where the blood is coming from. (my daughter was vomitting blood with eosinophilic esophagitus and for some reason constipation issues too.)

That being said.

It seems to me that there are at least some type of "food reaction" that could be identified through an elimination diet. My experience here was to remove all top 8 allergens and peas (staying gluten free too). Once there was a major improvement in health (clear scope) a small amount of suspect food was added back in the purest form for 3 days. (since I was looking for an eosinphil reaction there was at least a 12 day reaction to look for and wait out)

Definately go back to the specialist. Go over all the previous test results and make a list of what was ruled out for diagnoses. Monitor all other possible symptoms. A probiotic could be very helpful.

Was he tested for ITP ((hopefully I don't slaughter the spelling) Idiopathic Thrombosis Purpura))? Pernicious anemia? I do believe both conditions would cause red blood cell irregularity on test results and anemia.

Please keep us up to date on your progress. Thoughts and prayers for your family and cyber ((HUGS))!