What Would You Do?

[cmc811]

I've had a lot of posts so I'll try to summarize where we're currently at with our 5 yr old son.....

 

Symptoms:

*frequent belly ache

*waves of nausea

*constipation if not using Miralax

*small - only 39 lbs and 44 inches. Weight is around 15th percentile, height at 45th.

*Alopecia Areata

*Behavior issues - crazy off the wall tantrums triggered by insignificant things

*Always tired

*Ezcema/dry skin - currently has rash on bottom but doesn't seem to be itchy so DH not likely. UPDATE: just looked at that rash again and he says it's not itchy but he showed me some spots on his hips that are very itchy and look like some DH pics I've seen.

*Always cold

*Very mild asthma

 

Family History:

*Dad has ezcema, allergies and had asthma as a child. All symptoms are minor now as an adult

*Mom (me!) has just been diagnosed with Celiac.

*Grandpa has hypothyroidism (not sure if Hashi's because antibodies were never tested).

*Same Grandpa (my dad) has many symptoms of Celiac but hasn't gotten tested.

 

Testing:

*Total IgA 120 (24-300)

*tTg <1 with positive being >4

*EMA negative

*TSH 4.70 (0.70-5.97) of note TSH was 2.91 at age 2 and range for that lab was 0.40-4.00

*CRP 0.1 (0.0-0.5)

*Lipase 89 (73-393)

*CMP - all normal. Can post if of particular interest but didn't see anything noteworthy.

*CBC:

RBC 3.77 (4.50-5.10)

Hgb 11.4 (10.8-14.0)

Hct 34.3 (31.0-40.0)

MCV 90.9 (73.6-90.0)

*Vitamin D (done 03/2010) 45.7 (30.0-100.0)

*Ferritin (done 03/2010) 25.3 (12.0-113.0)

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So..............GI doctor has said he is willing to do endoscopy/biopsy since his symptoms have been going on for months with no identified cause, but he initially advised waiting a few months. Would you do it or explore the high TSH (that the doctors aren't calling high!) first? Is there something else I should be looking at? Doc won't do DGP so as far as Celiac blood tests this is what we're going to get. Is the biopsy likely to show anything? I hate to put a 5 yr old through the procedure for no reason, but the "Mommy my tummy hurts" and "I feel like I'm going to puke" have become a daily thing. Would going to the dermatologist be a good step? I'm afraid the DH-like spots he has will be overshadowed by the ezcema he has and we'll end up leaving with a steroid cream and no answers.

 

You have been so helpful so far so I just wanted an unemotional/unattached opinion before deciding whether or not to do the endoscopy.

[Cara in Boston]

Seems odd that your doctor is willing to do an endoscopy but not more blood tests.  My son was diagnosed at age 6.  He was negative on all the celiac tests except the TTG IgG and DGP IgG.  It was very confusing as his only symptom was behavior.  Similar to what you describe.  Complete meltdowns over seemingly insignificant things.  He was also very lethargic (laid around a lot, low energy) but I didn't really notice that until he got better and his energy returned.

 

I would try to have another (complete) celiac panel run to see if anything else comes up but the blood tests are not that reliable in kids.  If given the choice of endo now or wait it out . . . I'd do the endoscopy.  As nervous as I was, it turned out to be no big deal for Joe.  He actually had a pleasant time at Children's Hospital and returned home good as new.  Damage was found, so for us, we had an answer.

 

Be aware that a negative biopsy doesn't actually mean he does not have celiac.  I would put him on a gluten free diet after the biopsy (regardless of results) and see if you don't see improvement in three months.  Keep a record of symptoms . . . sometimes it is hard to see gradual changes.

 

Our changes were almost immediate.  Within days we had our happy kid back after almost 6 months of behavior so bad the whole family had to plan around the whims of one kid.

 

Best of luck to you.

[bluewhitesky]

I am absolutely no expert, but I am a mom of a 6 year old with possible DH. I would probably do the endoscopy, mostly because I want answers.

 

I just posted a photo of my son's rash on the DH page. Does your son's rash look anything like that? 

[cmc811]

Seems odd that your doctor is willing to do an endoscopy but not more blood tests.  My son was diagnosed at age 6.  He was negative on all the celiac tests except the TTG IgG and DGP IgG.  It was very confusing as his only symptom was behavior.  Similar to what you describe.  Complete meltdowns over seemingly insignificant things.  He was also very lethargic (laid around a lot, low energy) but I didn't really notice that until he got better and his energy returned.

 

I would try to have another (complete) celiac panel run to see if anything else comes up but the blood tests are not that reliable in kids.  If given the choice of endo now or wait it out . . . I'd do the endoscopy.  As nervous as I was, it turned out to be no big deal for Joe.  He actually had a pleasant time at Children's Hospital and returned home good as new.  Damage was found, so for us, we had an answer.

 

Be aware that a negative biopsy doesn't actually mean he does not have celiac.  I would put him on a gluten free diet after the biopsy (regardless of results) and see if you don't see improvement in three months.  Keep a record of symptoms . . . sometimes it is hard to see gradual changes.

 

Our changes were almost immediate.  Within days we had our happy kid back after almost 6 months of behavior so bad the whole family had to plan around the whims of one kid.

 

Best of luck to you.

Thanks for your input. I completely forgot that Joe was only positive on the IGG, which they didn't run on our son. I was leaning towards doing the endoscopy, but I just want to make sure I'm not putting him through something unnecessary just because I'm so desparate for answers.

[cmc811]

I am absolutely no expert, but I am a mom of a 6 year old with possible DH. I would probably do the endoscopy, mostly because I want answers.

 

I just posted a photo of my son's rash on the DH page. Does your son's rash look anything like that? 

The small patch he has on his hips (that is itchy) look just like what you posted, but the rash that he has on his bum (isn't itchy) doesn't look like that at all. I'm pretty sure my son has a few different rashes at the same time. He has had skin issues his whole life but never severe enough to try and treat.

[Cara in Boston]

If you can find a good dermatologist with experience with celiac, I think they can biopsy the DH rash and give you a diagnosis based on that.  (Not sure about that as this is not a symptom we experience.)

 

Bottom line, it is very likely your son has an issue with gluten based on his symptoms and family history.  Even if it is another autoimmune issue, the gluten-free diet may help him feel better.  I would want to give it a try as soon as possible, which means you need to do all the tests as soon as possible.

 

Have you considered doing some testing on your own (EnteroLabs) if your doctor will not agree to more tests?  

 

Is his doctor a regular pediatrician or a GI specialist?  Our regular pediatrician ordered the initial blood tests (TTG IgA, TTG IgG, Total IgA, Gliadin IgG, Gliadin IgA) but when we went to the GI, he was able to order the more specific tests (DGP IgG, GP IgA, IgA ELISA, EMA IgA)  It didn't really help us much since he was still only positive on the IgG tests and negative on all IgA tests, but maybe another doctor would give you more options. Can you ask your pediatrician to refer you to a GI?

 

Nevermind, I just re-read your post and see that you are already seeing a GI . . . . maybe try the opposite . . . can your regular pediatrician order more blood tests?

[StephanieL]

I would get a derm to biopsy around the DH site before I would do and endoscopy.  If it's + for DH then that means it IS 100% a case of Celiac. 

[cmc811]

If you can find a good dermatologist with experience with celiac, I think they can biopsy the DH rash and give you a diagnosis based on that.  (Not sure about that as this is not a symptom we experience.)

 

Bottom line, it is very likely your son has an issue with gluten based on his symptoms and family history.  Even if it is another autoimmune issue, the gluten-free diet may help him feel better.  I would want to give it a try as soon as possible, which means you need to do all the tests as soon as possible.

 

Have you considered doing some testing on your own (EnteroLabs) if your doctor will not agree to more tests?  

 

Is his doctor a regular pediatrician or a GI specialist?  Our regular pediatrician ordered the initial blood tests (TTG IgA, TTG IgG, Total IgA, Gliadin IgG, Gliadin IgA) but when we went to the GI, he was able to order the more specific tests (DGP IgG, GP IgA, IgA ELISA, EMA IgA)  It didn't really help us much since he was still only positive on the IgG tests and negative on all IgA tests, but maybe another doctor would give you more options. Can you ask your pediatrician to refer you to a GI?

 

Nevermind, I just re-read your post and see that you are already seeing a GI . . . . maybe try the opposite . . . can your regular pediatrician order more blood tests?

 

The pediatrician wasn't helpful at all. I had to demand the tTg IgA be done but she wouldn't order anything further since that was negative.

 

I think we're going to do the endoscopy. My only hesitation is that our son is extremely afraid of anything medical. Getting his blood drawn for the tests we've had done so far was a nightmare. I can't even imagine how he'll react when they try to start an iv. He wouldn't come near me when I had an IV in for my procedure.

[africanqueen99]

Can you find out if the hospital has a Child Life department?  They'll send someone to hang with him and talk about the procedure, play games, etc.  Totally kid friendly.  My oldest was nervous for her biopsy, but rocked the IV without a tear b/c they explained the process to her and she watched the whole thing.  My youngest was given a mask to decorate and smell (Child Life had him use chapstick to make it smell like grapes) so he could be gassed before the IV.

[StephanieL]

With all the - blood work, why would you go to an invasive procedure over a skin biopsy?  I would think that would be less traumatic over the endoscopy, no?

 

I know the child life people are great. They can help give you ideas how to proceed with informing him what's going to happen.

[cmc811]

With all the - blood work, why would you go to an invasive procedure over a skin biopsy?  I would think that would be less traumatic over the endoscopy, no?

 

I know the child life people are great. They can help give you ideas how to proceed with informing him what's going to happen.

I had an appt with a dermatologist for today but his rash is almost gone now, so I canceled it.

[cmc811]

Can you find out if the hospital has a Child Life department?  They'll send someone to hang with him and talk about the procedure, play games, etc.  Totally kid friendly.  My oldest was nervous for her biopsy, but rocked the IV without a tear b/c they explained the process to her and she watched the whole thing.  My youngest was given a mask to decorate and smell (Child Life had him use chapstick to make it smell like grapes) so he could be gassed before the IV.

Yes, they do have a Child Life department. I called today to get more details and they said we could even come in the day before so he could see everything in advance.

[mommiof3boys]

My son is 6 and he is having an endoscopy on Wednesday next week.  He had one skin biopsy and they said it was eczema, but the Dr (Derm) we seen on Wednesday of this week said no way and that he had IGM in his skin and that is the bodies first defense over invaders.  He had another biopsy on a more active rash on Wednesday.  Here is the link.  Stand your ground with the doctors, you are the parent and if you want a test ran they should do it.   I hope you get some answers soon.

Open Original Shared Link

[mommida]

Our family's experience with Eosinophilic Esophagitis, ~ do the endoscopy!

 

All symptoms do match EE or ( EoE).  Unfortunately they also match a list of presenting symptoms for....

hernia

H. Ployri

defect of the GI tract

parasite infection

Celiac

EE

the list goes on, but I just can't think of them all...

 

I also suggest you go back and try and piece together when the symptoms started.  (this is important because an "airborne allergen" can be the "trigger" for eosinophil production.  Once activated, eosinophils can damage normal tissue for 12 days.  So having the endoscopy could be pointless is the allergen hasn't been present for a month.  As most cases are diagnosed from an end of summer early fall season "flare" up of symptoms.)  Keep track of foods and activities.  (i.e. visited Aunt Sally's ~ who has 2 guinea pigs or as simple as dad mowed the lawn,  ate a seafood dinner.)