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

[Panserbjorne]

low stomach acid is a symptom of nutritional depletion though...it's not mutually exclusive.  It's placing your focus on a different place, and one further down the cascade from my perspective.  Low HCl is related to having too little zinc which is common in children with....food allergies.  It's not the only reason, again candida, heavy metals etc. can all create this situation.  It's just important not to throw out the possibility here because "it's more likely to be low stomach acid."

Hope that makes sense.  These things tend to cluster.  It's hard to have heavy metal issues without having yeast and food issues.  It's a chicken and egg thing.  It's ALL connected.

And while I believe you can heal without removing triggers, you need to have really, really good support to know if it's working or not.  From my perspective that generally happens more often if you are using several healing modalities to really support the body and create a space to heal.  Otherwise it more often than not becomes a balancing act...getting nutrients into the body while continuing to stress it.

I didn't remove all of our triggers...just the top ones.  But we did a LOT to heal.  I didn't just rely on the diet, which for us, was SCD.

[AquariusHome]

Also, thinking about where to go with the GI.  When we last saw him he had run pretty much every test he thought was appropriate short of a colonoscopy which he didn't feel would reveal much useful information.  If we pick up where we left off basically I'm thinking the colonoscopy question will come up again.  Would damage be visible on a scope if GI symptoms are mild like in DS2's case?  Assuming malabsorption is the problem I'm wondering if a scope is worthwhile to pursue.  My thought is we will rule out whatever the GI can help with first since that is covered by insurance and then go to the ND.

[kjbrown92]

Originally Posted by LaurieG 

BTW, Kathy, we live in central Illinois so Lyme disease is a possibility but not one that I had considered previously.  Interesting.

Also to everyone please excuse the typos.  Every time I sit down DD has been immediately finding me to NAK.  Weaning today though so hopefully the typos improve.

Another thought for general discussion - is it possible to do gut healing without removing trigger foods?  Or is that piece absolutely essential to the process?

Lyme is everywhere these days, unfortunately. If you're going to get tested go with Igenex of whatever the one is that Panserbjorne recommends.

I personally think that it's harder for gut healing if you leave in the trigger foods just because you're trying to do battle against something always there. For me, the analogy is like trying to cure poison ivy while you're letting your child roll in it every day. It may help, but not as fast as if you removed the poison ivy completely. But that's just my opinion not everybody's. And it certainly depends how much healing you're doing, and what support you have while doing it.
 

Originally Posted by LaurieG 

Also, thinking about where to go with the GI.  When we last saw him he had run pretty much every test he thought was appropriate short of a colonoscopy which he didn't feel would reveal much useful information.  If we pick up where we left off basically I'm thinking the colonoscopy question will come up again.  Would damage be visible on a scope if GI symptoms are mild like in DS2's case?  Assuming malabsorption is the problem I'm wondering if a scope is worthwhile to pursue.  My thought is we will rule out whatever the GI can help with first since that is covered by insurance and then go to the ND.

What has been done so far - an upper GI? a scope of the top of the digestive symptom? stool tests? are there tests for stomach acid amounts?
 

[AquariusHome]

What has been done so far - an upper GI? a scope of the top of the digestive symptom? stool tests? are there tests for stomach acid amounts?
 

The last time he was anemic we did a stool test looking for blood and the mainstream bacterial things - Campylobactor, Salmonella, etc.  Everything was negative.  Going back to the last time we saw GI (which was at age 2 or earlier) he had run a bunch of blood tests looking at things and also the stool cultures for bacteria.  I don't even know what all he was tested for then.  He has never had any imaging of any sort  and I have not taken him to a holistic practitioner, except for the chiro we were working with.    I don't know about testing for stomach acid.  I will ask about that. 

I'm basically pretty sure the GI isn't going to show anything, unless he happens to test positive for CD this time.  So given the whole suspicion of food allergies and yeast where do we start with the ND?  We don't have the cash at the moment to do it all, so with prioritizing I was thinking the stool test would be the first thing.  Anyone want to give their opinion on that one?

Also re: diet, I'm looking in to a bunch of options that might provide gut healing.  SCD and GAPS are intriguing but I don't think we can be 100% strict about it.  I just don't feel like I can tell the kids, at their current ages (DD excluded - she is too young to care too much and is used to being on a special diet) that they are never allowed to spend the night at a friend's house or go to food centered events unless they take their own food along.  But most of the time we can do things at home that will help.  Just not sure exactly which changes to make yet.
 

[AquariusHome]

His tTG was 48 yesterday, with a high end of normal of 20.  Scope to come....

The GI says there is only a 10-15% chance he is positive on biopsy.  I guess I will wait to cross that bridge if we get to it, but what do you do with that scenario?

[Panserbjorne]

aside from eliminate gluten, or in addition to?  Or are you asking about the scope?

[AquariusHome]

Originally Posted by Panserbjorne 

aside from eliminate gluten, or in addition to?  Or are you asking about the scope?

No, we're doing the scope.  I guess what I'm wondering is what could cause an elevated tTG if the scope doesn't show CD?  Is the tTG something that could randomly go up and down, or respond to some other intervention besides eliminating gluten?  I'm not clear on what the blood test is measuring and what an elevated level means.  So I'm trying to reason through whether it is prudent to eliminate gluten even if the scope doesn't show anything because the GI does not seem to want us to do that - he is very anti eliminating foods unless there is a very clear diagnosis which has been a source of contention between us for about 6 years now, but on the other hand I understand his reasoning and agree with some of it.  So anyway, I fully expect that if the scope shows nothing he will recommend doing nothing but following up periodically.  I want to hear the other side of the argument. 

[Panserbjorne]

oh, gotcha.  As far as I'm aware there is no known alternate differential diagnosis for elevated tTG that is accepted in the medical literature.  I'll double check.  If you search celiac specific boards where people live, eat and breathe you will find that answer over and over again. That doesn't mean all docs believe it.  IT means it can be explained away as an anomaly if they want to, or lead to further testing for other things which usually end up, IMO related to CD.

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.

Do you know what the current stats are for CD?  Last I looked it was 1:133 had it and that was from several years ago.  That is not a small number of people.  My point is that docs STILL aren't good at diagnosing it.  Look at the increase here:

0.9 per 100,000 in 1950 to 1989
3.3 per 100,000 in the 1990s
9.1 per 100,000 in 2000 and 2001
20.6 per 100,000 in 2003

Imagine being one of those people who was told definitively they didn't have it only to continue suffering because the tests weren't adequate.

[AquariusHome]

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?

[Panserbjorne]

Originally Posted by LaurieG 

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.  Cold hands and feet make me think low functioning thyroid, also quite common with CD.

I will also say as I said before these things cluster and start resembling each other.  Just because I can look at a list and say, "yup, CD has all that" doesn't mean it IS CD.  There are many, many things that overlap and you are right to question.

[AquariusHome]

Originally Posted by Panserbjorne 

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.

[AquariusHome]

Originally Posted by Panserbjorne 

Originally Posted by LaurieG 

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.

[Panserbjorne]

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.

[AquariusHome]

Originally Posted by Panserbjorne 

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.

[Panserbjorne]

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.

[AquariusHome]

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?

[chlobo]

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?

[kjbrown92]

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?

[AquariusHome]

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....

[chlobo]

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.