Why is my 6-yr old anemic? Update #25 - Page 2 - Mothering Forums

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Old 01-22-2011, 06:04 AM - Thread Starter
 
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oh, gotcha.  As far as I'm aware there is no known alternate differential for elevated tTG.  That doesn't mean they will listen to it.  IT means it can be explained away as an anomaly if they want to.

 

You could still have a negative biopsy.  The damage to the intestine happens over time and will often only start after a trigger.  It's certainly possible that she's not damaged enough to have a positive result.  IN which case you'd need to make a choice.  The non removal after these tests avenue is for seriously hardcore docs and I don't understand it.  Basically they're waiting for things to get bad enough that the tissue reflects what the blood work is already showing.

 

Your doc sounds pretty hardcore.  There are those who will use blood tests and physical exams to make a clinical diagnosis.  He is against removal even WITH the positive tTG?  I think, if you got a negative scope, I'd get a second opinion.  Just my two cents.



We cross posted.  Thanks for your input, PB.  I really appreciate it.  Yes, my understanding from what he has said so far is that he would not recommend eliminating gluten unless the scope shows damage that is consistent with CD.  He has given us the option, in light of the elevated tTG, that we could just do the endoscopy for now.  But if that comes back negative he would still want to do a colonoscopy later to check for other things.(Crohns, etc) so we're thinking we'll just do it all at once.  So he is not feeling like the tTG alone (or in combination with the other symptoms of CD that I pointed out to him) are enough evidence to make a diagnosis of CD.  He said if the scopes show nothing he would follow DS every 6 months. 

 

However, as I said he and i have disagreed on this point several times in the past.  DH and I were discussing it last night and felt, with the limited understanding that we have, that it would probably be best to go ahead and eliminate or at least greatly reduce gluten regardless of what the GI recommends, unless he can give us a really good reason that makes sense to us to wait and see.

 

He is hardcore in that he is very evidence based medicine focused - professor and med director at one of the best med schools in the country which is nice except that this med school in general waits for the evidence to be in place before recommending interventions and obviously that can take decades after something becomes obvious to everyone else.


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Old 01-22-2011, 06:10 AM - Thread Starter
 
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So from what I'm reading it seems you could have an elevated tTG if there was some other autoimmune issue instead of CD (Type I diabetes or RA for example).  Here is a list of his "symptoms":  recurrent mild anemia, damaged tooth enamel, borderline constipation, bedwetting, tendency to have melt downs around meals and at bedtime, high energy level and difficulty with maintaining attention (subclinical ADHD I would say), cold hands and feet.   Does anything else autoimmune jump out at anyone?

 

Another CD question - is the reaction IgG with CD?  I didn't think so but some of the things I have been reading talk about doing an ELISA IgG test for gluten sensitivity as part of the diagnostic process.  I had thought CD was a totally different process than my or DD's IgG allergies.  If it is IgG then all of the symptoms seem like they could be d/t gluten and nothing else seems as likely as that.  But I had never read bedwetting or ADHD as symptoms of CD as far as I recall.

 

More thoughts (looking for opinions on this, as it is obviously a judgement call since we can't see the future) - what do we do about DD?  Her Turner Syndrome alone (even without a brother with CD) means that she is at a very high risk for developing CD (some stats I have seen go as high as 30% likelihood but I don't know if that is accurate).  She already has GI symptoms related to food sensitivities, although multiple gluten eliminations have not seemed to make a difference in the past.  So do we pre-emptively eliminate gluten for her if DS has CD?


I haven't met a doc yet that doesn't link the elevated tTG to gluten.  It can be a reason to look for other things for inquisitive minds, and I do agree that it could have some looking for alternate autoimmune diagnosis.  However do you know what the percentage is of people with RA/diabetes AND celiac?  I look at these number with a seriously jaundiced eye.  How many get diagnosed as a result of tTG and subsequent testing with RA...only to find out years later that celiac was the underlying issue?  OR even just an additional issue?  Nope.  I still say that this is indicative of CD.  It's just how you want to pursue it.

 

My dd was diagnosed with a genetic test, as well as positive IgA, IgG, tTG and she presented with DH.  No scope.  Removal of gluten, dairy and soy was necessary for her, as is common with many people with CD.

 

When you say removing gluten hasn't helped in the past, how long are we talking with absolutely no exposure?  For someone with celiac cross contamination is considered exposure, and yes...that tiny amount will trigger a response in most.  So most people who remove gluten with no results end up finding out they didn't truly remove it.  Plus it generally has to be out for 4-6 weeks before you really see a change.

 

I'm certainly not hoping it's CD.  Just trying to give you my perspective.  And ADHD and bedwetting are both common with food allergies in general so they could definitely tie in to this.  Bedwetting is also common with yeast.



We haven't eliminated gluten in DS (the one with the elevated tTG) ever for longer than a week or so.  But with DD we have done a 3 month trial off gluten twice and the first one in particular was very strict, but she was only a year old at that point.  She gets tested for CD every year because of her TS and it is always within the normal range.  But then her serum iron was low this month so maybe the symptoms are just starting now?.

 

And good point to consider on the possibility of gluten causing the RA or other autoimmune issuse.


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Old 01-22-2011, 06:20 AM
 
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I edited my above post for more clarity and additional stats.

 

I also don't want to sound like I'm lambasting your doc.  From HIS perspective tTG is perhaps not enough, and most don't necessarily like IgG results.  However it may be worth running them.  Low ferritin is another reason to suspect CD-with anemia, did they break that down for you?  What kind of anemia?   Another thing to look at is suppressed sIgA, though if she's early on that may not be present. 

 

The genetic test is also an option.  What he's saying if the scope is negative is if she has the predisposition it's not expressing yet.  For a diagnosis he wants to see expression.  I understand that from an evidence based medicine perspective.  I don't from a parent's perspective, or from someone who works in prevention.  He wants to see disease so he can treat.  I'd prefer that, when you have clear results showing your predisposition you don't express.  I prefer to take preemptive measures to avoid pathology if at all possible.

 

Different theoretical starting points.  Not saying I'm right.  Just showing where I'm coming from.  And another reason the stats above can be skewed.

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Old 01-22-2011, 07:12 AM - Thread Starter
 
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I edited my above post for more clarity and additional stats.

 

I also don't want to sound like I'm lambasting your doc.  From HIS perspective tTG is perhaps not enough, and most don't necessarily like IgG results.  However it may be worth running them.  Low ferritin is another reason to suspect CD-with anemia, did they break that down for you?  What kind of anemia?   Another thing to look at is suppressed sIgA, though if she's early on that may not be present. 

 

The genetic test is also an option.  What he's saying if the scope is negative is if she has the predisposition it's not expressing yet.  For a diagnosis he wants to see expression.  I understand that from an evidence based medicine perspective.  I don't from a parent's perspective, or from someone who works in prevention.  He wants to see disease so he can treat.  I'd prefer that, when you have clear results showing your predisposition you don't express.  I prefer to take preemptive measures to avoid pathology if at all possible.

 

Different theoretical starting points.  Not saying I'm right.  Just showing where I'm coming from.  And another reason the stats above can be skewed.



I get it, PB.  I tend toward a prevention frame-of-reference myself so I have been extremely frustrated with docs at this hospital (this GI in particular) in the past.  Now I have reached a point of understanding and agreeing to disagree and go to other sources to get the other side of things.

 

So with my 3-yr-old DD who is low iron but not anemic I did ask him about that while we were there with DS this week.  He said it is non-anemic iron deficiency.  Didn't offer a reason, but I am now suspecting early stage CD in her as well.  Unlike DS, who has been anemic practically his whole life, DD has never been anemic or even low before despite lots more bloody stools than DS ever had.  We did IgG testing on her and she tested low positive to wheat but no reaction to gluten.  So, now that I'm thinking of it, the second time we eliminated it was just wheat.


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Old 01-22-2011, 07:42 AM
 
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gotcha. 

 

So yes...you definitely hit the nail on the head in terms of only wheat and not gluten.  good catch there.

 

Sounds like if it's an issue it's still early stage.  You're being super proactive, but not likely to get a ton of answer from the medical profession, which is okay.

 

Good luck and you're really doing a great job of information gathering and questioning.

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Old 02-02-2011, 04:19 PM - Thread Starter
 
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Well, the endoscopy and colonoscopy was normal. 

 

We're thinking we need to build up his iron level before we mess with gluten so that we have a true baseline to go off of.  The GI wants to see him in 3 months and repeat iron tests and tTG (I think/ hope).  If his iron is better and tTG is the same or higher we will trial no gluten.  If his tTG has dropped, iron is better, and behavior has improved I don't know what we'll do.  If iron is better but behavior is not all the more evidence in my mind to do a trial off gluten. 

 

Hoping waiting 3 months doesn't cause CD to develop when it wasn't there yet.  I'm pretty sure we'll be eliminating gluten at home at a minimum as a preventative measure, but I feel like we need to stagger the interventions so we can really try to determine what effect things have. 

 

Thoughts?


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Old 02-02-2011, 06:45 PM
 
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My understanding of CD is that you need to remove *all* gluten everywhere.  Merely limiting exposure isn't enough.  It is not like other allergies where you "fill the bucket" so to speak.  Consuming gluten with CD feeds an autoimmune process.

 

Honestly, I'm not understanding your hesitation to remove gluten.  I know if can be a PIA.  Our whole family is gluten free despite no one having a clinical diagnosis of celiac disease.  We did it all on suspicion.  Once we eliminated gluten some issues resolved and we had our answer.  If you had a predisposition to heart disease would you wait until you had a heart attack to treat yourself?  Or would you make the appropriate lifestyle modifications to try and avoid the heart attack?


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Old 02-02-2011, 07:19 PM
 
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I agree with Chlobo. DS, DD2 and I are all non-celiac gluten-intolerance people. If you take gluten out, you may find that the anemia resolves, so why try to increase iron first? There's gluten intolerance, and CD. One is heal-able, one is auto-immune. If you haven't agreed with the doctor for 6 years, I'm also wondering why you don't see another one, to at least get another point of view. There are many doctors who know barely anything about celiac, and until they have a patient with celiac, don't learn, mostly because pharmaceutical companies aren't funding research because there's no cure for it except dietary changes. It will not hurt the child to go off gluten, so why not try it?


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Old 02-03-2011, 06:40 AM - Thread Starter
 
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I hear what you are both saying and am thinking it over.  Kathy, I have had the same thought that maybe eliminating gluten without supplementing iron would give us the answer if his iron levels go up.  But if they don't I really don't want him to continue being anemic longer than necessary.  It seems like we should supplement until he's back in a normal range and then see what effect eliminating gluten has on his ability to maintain. 

 

My thought on staggering interventions is that if we work on building up his iron at the same time we eliminate gluten and he looks better after a few months we will not know whether it was the resolution of the anemia or the lack of gluten that made the difference, and then may feel like he needs to remain strictly gluten free when in actuality that isn't the problem at all.  I know it is possible to do it, but I don't really want to keep him that restricted unless I know gluten is really the problem.  The GI is extremely good from a strictly medical point of view.  His downfall is that he is so evidence based that if the research doesn't show he is skeptical, and he worries about the psychosocial implecations of eliminating foods in children which also concerns me.  He says that not uncommonly he has seen a tTG in this range fall back down into a normal range without interventions.  So I'm questioning the validity of that test.  My strategy in recent years in dealing with him has been to see what he has to say and then go to the naturapath to get her perspective.  I need to call her and get an appointment.

 

Anyhow, tossing it around in my mind today....


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Old 02-03-2011, 10:58 AM
 
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Does the GI worry about the fact that you could have prevented something if you acted sooner rather than waiting for pathology to develop before taking action?  Or is his only concern that eliminating wheat might be hard?

 

I had some wonky #s & it was recommended that I see a rheumatologist.  I went to see him and he basically told me that I have some signs of developing an autoimmune disease but from his point of view he couldn't do anything until I actually develop one.  Sounds like your GI and it doesn't sound like a very good health model.  Sounds like a sick model to me.


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Old 02-03-2011, 07:41 PM
 
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You mention several different things. Grouchiness, stomachaches, possible reflux, as well as the anemia. So even if you work on the anemia AND take out gluten, you may find the answer to all of them. So if you took out gluten and they all went away, wouldn't that be a bonus? Anemia certainly isn't a normal thing, so there must be a reason. And if he's showing other symptoms of food intolerance than it's likely it's something. Dairy is the other (and more common) one though gluten intolerance and/or celiac are more often associated with anemia. Even if you work on the anemia, he's still got the other things going on, so are you going to wait while you work on the anemia before you tackle the other things, or tackle them possibly all at once? What about a game plan of going off gluten and dairy for 1 month and see where you are in terms of all of the symptoms he's got? When is your next appointment?


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Old 02-04-2011, 06:45 AM - Thread Starter
 
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You mention several different things. Grouchiness, stomachaches, possible reflux, as well as the anemia. So even if you work on the anemia AND take out gluten, you may find the answer to all of them. So if you took out gluten and they all went away, wouldn't that be a bonus? Anemia certainly isn't a normal thing, so there must be a reason. And if he's showing other symptoms of food intolerance than it's likely it's something. Dairy is the other (and more common) one though gluten intolerance and/or celiac are more often associated with anemia. Even if you work on the anemia, he's still got the other things going on, so are you going to wait while you work on the anemia before you tackle the other things, or tackle them possibly all at once? What about a game plan of going off gluten and dairy for 1 month and see where you are in terms of all of the symptoms he's got? When is your next appointment?



The stomachaches and possible reflux are DS1, my 8-yr old.  DS2, my anemic guy just has the anemia and the episodic grouchiness/ tendency toward meltdowns in the evenings which could be explained by the anemia.  He isn't typically a grouchy kid but has been having these episodes recently for several months which makes me think its more a factor of the anemia than whatever food is the problem.

 

The anemia is a clue, but I'm not comfortable letting it drop right now.  If his iron level was higher we could eliminate gluten and eliminate the supplement and watch what his iron level does.  

 

We see the holistic practitioner in early March (our ND wasn't available til end of April).  GI at the end of April.  We could have the hp check his iron in March and if it is better eliminate gluten at that point and check him again in April.


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Old 02-04-2011, 08:41 AM
 
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I don't understand why his iron needs to be higher in order to eliminate gluten?  His iron is not going to go down by eliminating gluten so you can only help the situation by eliminating the gluten AND supplementing.

 

Also, sounds like DS1 might have some kind of food issues going on as well.

 

ETA:  I just want to point out that you already know your DSs iron level will rise with supplementation.  So the issue is not getting it up.  The issue is why it keeps going down.  


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Old 02-04-2011, 11:02 AM - Thread Starter
 
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How will I know that eliminating gluten makes a difference if I do it while I'm also working to resolve the anemia?  If I supplement with iron to correct the anemia chances are good his behavior is going to improve.  If I supplement with iron and eliminate gluten, chances are his behavior is going to improve.   

 

If I supplement with iron, his iron levels will go up.  If I supplement with iron and eliminate gluten, his iron levels will go up. 

 

If I supplement with iron to resolve the anemia, see how he looks when he's not anemic, and then eliminate gluten and see what changes in terms of behavior then I will know whether gluten affects behavior.  If I supplement with iron to resolve the anemia, then remove the supplement and eliminate gluten we can see if without gluten he is better able to hold his iron in a good level.  That way we'll know if gluten makes a difference in absorption of iron.  I could eliminate gluten and not supplement - if his iron levels rose that would be pretty telling, but I don't want to risk them falling.

 

For the anemia piece we could eliminate gluten at the same time and then see after he was in a normal range with iron, but for the behavior piece I don't see how I will know doing it at the same time.  We don't have stomach aches, stool issues, nausea, etc to base it on.  Just the behavior, which could be explained by the anemia.

 

And yes, I know DS1 probably also has food issues.  We've done eliminations, IgG testing, etc but nothing gives us clear answers on him.  So for the minute we're working on balancing his gut and building his immune system which seems to be helping.

 

Edited to clarify.


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Old 02-04-2011, 02:19 PM
 
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hmmm, maybe just looking at it from all the angles will be helpful?  I personally don't generally like to supplement iron.  It is fairly toxic, you can overdo it easily, and more often than not the problem isn't how much iron is going in, but what you're able to use of what's there.  I would look to correct absorption issues before supplementation with that particular nutrient.  But YMMV.  Just another perspective.

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Old 02-04-2011, 02:47 PM
 
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If your child is sensitive enough to gluten that it is damaging the gut, then simply supplementing with iron will not be enough, because it will not be absorbed. You could try supplementing alone for a few weeks, and see if it goes up. But as the pp says, most iron supplements are pretty toxic, and really can mess up your digestion (I was anemic in pregnancy and had to be on a high level of iron, and even though I was using a supposedly gentle form, I still got major constipation).


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Old 02-04-2011, 05:57 PM - Thread Starter
 
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If your child is sensitive enough to gluten that it is damaging the gut, then simply supplementing with iron will not be enough, because it will not be absorbed. You could try supplementing alone for a few weeks, and see if it goes up. But as the pp says, most iron supplements are pretty toxic, and really can mess up your digestion (I was anemic in pregnancy and had to be on a high level of iron, and even though I was using a supposedly gentle form, I still got major constipation).



I would think so, too.  Which is one of the reasons I'm not completely convinced we're on the right track with the gluten theory and why I would really like to have some sort of clear sign that gluten is the issue before I eliminate it long-term.  The only thing we really have on gluten is the tTG, which is of questionable validity.

 

The reality is that he seems to be absorbing the supplemental iron pretty well.  The last time he was anemic (age 4) we gave him a multivitamin + juice plus gummies for 2-3 months and that was enought to bring his hemoglobin and hematocrit back into a normal range.  This time his 1st blood test was 12/30 and his hemoglobin was 11.1.  On 1/17, after taking just flintstones chewables (we just ran out and got something we knew he would take with the intention of finding something better later) + JP gummies for those few weeks his hemoglobin had already come up to 11.3.  Low end of normal is 11.5.  So he does seem to be absorbing the iron in the vitamins pretty well.  It has me questioning whether it really is just that he avoids his veggies.

 

Also, if he was so sensitive to gluten that his gut was damaged and not absorbing well don't you think he would have other clear symptoms of food intolerance?  DD, for example, very obviously is food intolerant.  DS1 has a lot of signs - if someone said "he's sensitive to a, b, c" I would say okay, I see that.  But DS2 is just not like that.  Maybe things will become obvious once we eliminate gluten.  

 

On the other hand there are reports of people with CD who have few symptoms.  Maybe gluten sensitivity is the same.  There are just so many other things it could possibly be - I really want to have something concrete telling me we're on the right track with the gluten.  I'd take it in the form of a test ahead of eliminating (a second tTG with similar results would do, or something else pointing toward CD or gluten intolerance) or in the form of post elimination (like clear behavioral changes).  But worst case scenario is we *think* we should keep him off gluten but never really know for sure.


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Old 02-04-2011, 06:12 PM
 
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but you could try it for a month and see what changes you see. Not saying you have to do it forever, but you could try it out. And I thought iron was from meat, not from veggies, right?


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Old 02-04-2011, 06:26 PM - Thread Starter
 
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hmmm, maybe just looking at it from all the angles will be helpful?  I personally don't generally like to supplement iron.  It is fairly toxic, you can overdo it easily, and more often than not the problem isn't how much iron is going in, but what you're able to use of what's there.  I would look to correct absorption issues before supplementation with that particular nutrient.  But YMMV.  Just another perspective.


Good point.
 


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Old 02-04-2011, 06:31 PM - Thread Starter
 
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but you could try it for a month and see what changes you see. Not saying you have to do it forever, but you could try it out. And I thought iron was from meat, not from veggies, right?



 Right.  True. 

 

There is more iron in meat than veggies, but some question as to what form is most bioavailable.  Breastmilk, for example, has very little iron but is super absorbable.   So there is some evidence that iron might be better absorbed from veggies than meat.  In our experience when he was little DS didn't seem to absorb the iron in supplements or in the meats - he had kind of plateued for awhile - but once we added the juice plus there was a significant spike in his levels.  So I tend to think the veggies are an important piece.


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