Is my concern justified?.... (underweight & anemic)

[ryan'smom]

because I feel like no one is taking me seriously.  My main concern is the minimal growth that my 18 month ds has been experiencing over the last 6+ months.  After voicing my concerns to our family doc, he referred us to an endocrinologist2 months ago (who did nothing but a quick physical exam) and said to try feeding ds more.

Tests done by family doc:

CBC/Chemistry

Thyroid

Celiac blood test

Lead test

Iron---tested at *25  normal range (40-100)

Tests done by allergist:

SPT-  corn, wheat, dairy, egg yolk, egg white, peanut, soy---all negative

Hemoccult stool test ---positive for blood

Somehow the results of the stool test got sent back to our regular doc instead of the allergist.  He wanted to see ds right away....so we took him in on Friday.  The doc wanted to do an in office test for the blood in the stool because he (for some reason) seemed skeptical of the positive result from the lab.  He wasn't able to get a good sample, just a little yellow mucous on his glove, but he still did the test which came back negative there in the office.  He then gave me a script to get more of the cards to repeat the test at the lab.  If this test came back positve again, then he may entertain the idea of a GI referral.

I have not had a chance to speak with the allergist who was the one that actually ordered the initial stool test.  I have never actually seen physical blood in his stools.  His stools are usually the consistency of peanut butter....a little firmer if he's had banana or advacado.  He is nursing, does not drink cow's milk, but does eat dairy in other forms.

Here is ds growth pattern:

Birth:         6# 6oz        19 1/2"

4 days:      6# 8oz         20"

1 month:    9# 6oz         21"

2.5 months:  11# 2oz     24"

4.5 months:  13# 1 oz    26"

5 months:    13# 15 oz   

9 months:    16#             28"

12 months:  17# 6oz      29"

15 months:  18# 2oz      30.5"

18 months:  18# 10oz     30.5"

Thank you for reading!  I would appreciate any thoughts/ ideas.  I am feeling more worried as each day passes and him being 18 months old and so tiny....the anemia and occult blood test are red flags that *something* is not right and me "feeding him more" is not the complete answer.

[deditus]

That is concerning. I would eliminate gluten, dairy, & soy right away. Dairy is the most common cause of blood in the stool and most kids who are dairy intolerant are also soy intolerant. Gluten intolerance can cause the same symptoms as celiac disease.

[ryan'smom]

Thank you for your response deditus...I appreciate your input!

The allergist just called to go over the test results and she said that only 1 sample out of 3 tested positive for blood.  She said that usually if there is a major problem you will see"lots of visible blood".....hmmm.  She also recommended repeating the occult blood test and if it comes back positive again that she would recommend eliminating dairy & soy for 3 months then checking the stool again.  If negative for blood at that time, reintroduce dairy & soy for 1 month and repeat test to check for blood.

A positive test result seems pretty conclusive to me that there is some bleeding going on.  Why 2 of the samples were negative, I don't know!  But the anemia is still there on the back burner.

I just dropped off the new batch of 3 samples at the lab today.  Should have the results by tomorrow. 

Should I push for a GI referral even if these samples all come back negative for blood?  I will be eliminating dairy & soy for sure, but I'm on the fence about gluten.  Just in case we get a GI referral, I would want him to have some recent exposure for possible testing purposes. 

[tanyalynn]

I agree with deditus.  Thing is--if gluten's causing the problem, and the IgE was negative for wheat, then just removing gluten is the answer.  Food intolerances cause a wide range of problems in different people--DS and I are gluten intolerant and it does nothing digestive to us, but for DD it does mess up her digestion, some people get rashes--it's pretty wide-ranging.  But with growth issues and fecal blood, gluten is just such a problematic protein, removing it seems wise to me.  I'm not confident that you're going to get really helpful advice from a GI doc (or an allergist) if you don't have blatant GI stuff going on that is caused by something GI docs typically deal with (and food intolerances seem to be pretty hit-or-miss with GI docs), and you've ruled out (sorta, testing is sometimes iffy in young kids) IgE allergies to the top 8 with the allergist. 

What does your family health history look like?  As deditus said, plain ol' food intolerance can cause the problems you're seeing, but celiac can too.  Celiac is autoimmune and other autoimmune things like type 1 diabetes and RA can tend to cluster in families with celiac.  And people with long-standing digestive issues, IBS and such, tends to happen more when celiac's been missed.   I mean--my family's just got plain old gluten intolerance issues, celiac clearly isn't our issue, but it's helpful to get a feel as to whether it could be in play for you.

And has anyone suggested an iron supplement?  Seems appropriate (though yeah, figuring out the root cause of why your LO is anemic is important too).

[Petie1104]

Just wondering, have they checked for parasites?  Ds2 had a high allersomething level (can't remember what the doc called it) and it turns out he had parasites.  We had initially gone in with concerns over his growth, oh and his iron count was low as well.  Just something to consider, but you would think with the stool samples they would have found them if they were there.

[joybird]

I was also going to say get a celiac test ASAP.  Any time there is ftt or slow growth it should be considered a first move.  Celiac is very common but terribly under-diagnosed.  And your regular doctor can order the test, it doesn't need to be a GI.   It sounds like you might need to look for a new doctor though.  If you don't feel that your concerns are being respected that's a big red flag.  I don't understand why he won't give you a GI referral?  What would it hurt him?  At the end of the day you need to remember that you are in charge of your child, not the doctor.  You are paying him for his services and if he isn't doing the job the way you want it done, fire him.  There are a million other docs out there who will see that your child gets tested.  If its really not an option to change doctors, stand your ground and do not accept no for an answer.  

[ryan'smom]

thank you ladies for more of your insight!  Again, it is all greatly appreciated.

tanyalynn-  no family history of celiacs/ibs, etc.  He is currently on a mulit vitamin with iron.  It was a huge battle to get him to take the Floradix or Ferrin-sol......

petie-  I will add a stool check for parasites to the list of requests!

joybird-  my regular dco did order a celiac blood test....is there something more specific I should request?......I guess the main reason I am hesitant to cut out gluten right away is so that he can be tested for celiacs.....and from what I've gathered, a GI doc can do a scope to check for damage???  .....and I agree with you 100% about the doc working for ME....we'll see how things play out over the next few days.

[joybird]

I'm sorry, I completely missed that!  Yes, the GI would do a scope to test for damage if the blood test was inconclusive.  But your ds doesn't need to be consuming gluten for the scope, only for the blood test.  Damage from gluten takes a while to heal.  The scope is also very invasive and many parents choose to remove gluten and see if things improve instead.  If so then you have an answer.  I really agree with tanyalynn that its a good idea to get gluten out of the way, whether there's true celiac, intolerance, allergy or whatever.  Dairy as well, and soy.  They all seem to go together but it seems that gluten is often the big offender, causing the other foods to be more intolerable than they might be otherwise.  Its possible that you'll find help from a GI, but equally possible that you won't.  You could also look into IgG testing that can be done by a naturopath or you can order it yourself through several private companies.  There is debate about its accuracy but then allergy tests in general are known to be misleading.  I hope you get some answers soon.  Just keep pressing for them.  

[ryan'smom]

Ok, the nurse just called from the doc's office and said that the latest stool samples came back negative for blood......I did ask her about getting an order to test for intestinal parasites...still waiting to hear back from the office about that.

I broke down and ordered a complete stool test from Enterolab to check for gluten antibodies, malabsorption, gene test, and caesin antibodies.  I've read mixed reviews/opinions about the lab and it's tests, but finally decided to go for it.  My mom generously offered to fund the test....early b-day present for me.

I am planning to make the trek to Whole Foods (wish it was closer!) at the end of the week to get some groceries to help make the diet change for me and ds.

Praying that the diet change helps with his growth....otherwise, I am lost as to what else to do.

[kjbrown92]

And even if there isn't celiac, there are still plenty of people who have gluten intolerance.

[joybird]

I think the stool test is an excellent idea.  It should give you some good information and help point you in the right direction.

[Panserbjorne]

I agree with removal of gluten, dairy and soy for starters.  So many have similar stories, and this is what helps them turn the corner.

As far as the blood in the stool, I understand that if there is a major problem you may see blood...but before problems become major they are often minor...so why not stop the progression?

I would also personally start with cell salts (calc phos and ferrum phos to see if you can address the iron issue.)   That seems to help people more than frank supplementation. 

[Panserbjorne]

 

Originally Posted by joybird 

I was also going to say get a celiac test ASAP.  Any time there is ftt or slow growth it should be considered a first move.  Celiac is very common but terribly under-diagnosed.  And your regular doctor can order the test, it doesn't need to be a GI.   It sounds like you might need to look for a new doctor though.  If you don't feel that your concerns are being respected that's a big red flag.  I don't understand why he won't give you a GI referral?  What would it hurt him?  At the end of the day you need to remember that you are in charge of your child, not the doctor.  You are paying him for his services and if he isn't doing the job the way you want it done, fire him.  There are a million other docs out there who will see that your child gets tested.  If its really not an option to change doctors, stand your ground and do not accept no for an answer.  

I'm not saying you shouldn't switch, but really to answer the bolded what goes on behind the scenes could be more the issue than the doc himself.  So much is controlled by the insurance companies.  Another doc may have a different perspective but more and more people are running in to this kind of thing.

You are in charge of your child, but unless you pay out of pocket (and at this point many choose to do just that) you are limited to what insurance is willing to support and you need to have all the right codes for them to comply.  It's a weird, weird world.

[ryan'smom]

I can't tell you all how much your advice/wisdom means to me!  You all are being so helpful.

Got the order to check for parasites/ova, so I will be submitting the sample sometime tomorrow.

As for the GI doc....our insurance requires a PCP referral for specialists.  I think with some convincing, I have a good chance of him giving the referral, but with the absence of blood on the last set of samples will make my case pretty weak.  Other than the anemia & low weight/slow growth he is meeting all milestones.  I'm not sure if a GI doc would take much interest in our case since there are no blatent GI symptoms going on (other than the 1 positive fecal occult reading).   I'm still on the fence with this one.  Sorry, just thinking out loud at this point.

Panser-  I'll check into the cell salts.....I'm happy that I actually got him to take some Floradix today without much of a battle lol

[LaurieG]

Originally Posted by Panserbjorne 

I agree with removal of gluten, dairy and soy for starters.  So many have similar stories, and this is what helps them turn the corner.

As far as the blood in the stool, I understand that if there is a major problem you may see blood...but before problems become major they are often minor...so why not stop the progression?

I would also personally start with cell salts (calc phos and ferrum phos to see if you can address the iron issue.)   That seems to help people more than frank supplementation.

Is there anywhere in particular best to get the cell salts or any will do?  Is it the type of thing most health food stores carry?

BTW, I agree with everyone else's recommendation of removal of dairy, soy, and gluten.  FWIW my DS2 (age 6) has a similar history to your DS, although he did have colitis with visible blood in his stool early on which eventually resolved.  But he was anemic for some time regardless of how much iron we supplemented.  Once we got him back in the normal range the GI said leave him alone (he was no longer having GI symptoms) but he has been anemic off and on since then despite no visible blood in the stool.  So anyway, we're now at the point of looking at eliminating gluten and it is so much harder in a 6 yr old than a 1 yr old to deal with eliminations.

[ryan'smom]

Well, the results of the stool test came back negative for parasites/ova.  I was almost hoping that it would have came back positive for something...it may have suggested an "easy" fix.  But, at least I can cross that off the list of possibilities.

Ds and I started the gluten, soy, and dairy free diet yesterday.  I'm hoping for some obvious improvement to help motivate the change.  I'm mentally prepared to try it for 3 months before coming to any conclusions.

I'm in the process of collecting 1 cup of stool to send in for the Enterolab testing.  Will also be sending the mouth swab for the DNA analysis as well.  Hoping this gives us some answers or at least points us in the right direction.

For those who's dc who have suffered slow growth, how quickly/soon did you notice an improvement once eliminating gluten/dairy/soy...etc.??

Thank you all again.  You have all been more helpful than you can possibly know.

[Panserbjorne]

for the salts for the average person you can get them through www.1800homeopathy.com  they are lactose based and a good number of folks do react to it if they have a problem with dairy.  If there's a dairy issue pm me.

pp-I noticed a change in my dd within a week of eliminating allergens.  The growth followed quickly.  Definitely noticeable in 3 months or so.  She was 15 months before we started to really figure out that piece of the puzzle.  Within 3 months she started growing hair for the first time and her nails finally needed to be cut.

[CCJWGM]

At age 2 my DD stopped growing for 10 months.  She was so underweight and no one could come up with a conclusive diagnosis.  We put her on a gluten, dairy, and soy diet and she started growing within a week.  Yes, a week!!!!!!  FWIW, we also supplemented with probiotics and some good old fashioned CLO.  I'm sure they both helped but the removal of gluten, dairy, and soy was, and still is, the most important thing. 

We did much the same tests as you and nothing came up conclusive.  We saw this dr. and that dr. and yet another dr.  To find answers the tests started becoming more and more invasive and for each test we would have to stress her system with gluten and dairy.  We even put her under to have an endo/colonoscopy.  That's when we said ENOUGH!!!!!  We never have gotten an official diagnosis and we are okay with that. 

She is growing and a very healthy/active 5 y.o. now.  :) 

[deminc]

I had a similar experience. My son was born pretty chubby with hair but after 1 year old when he was taking a lot more solids, he just did not thrive anymore and his hair became really sparse. However I was overwhelmed by his sleeping issue and crying and it did not cross my mind that the food was not agreeing with him. Finally a few months before he turned 3, we did an elimination diet for his eczema, and eventually I took out the big 8. Wow! He began to grow! I totally did not expect that. His eczema did not resolve fully as there are also environmental triggers, but he has a healthy head of hair now and rosy cheeks.