Looks like Celiac, but no definitive test result (4 yo)

[ravenu5]

My 4 yo son has had iron issues since he was 1.  At 2 he had upper and lower scopes done, both didn't show anything abnormal.  Treatment for his iron has been to increase his iron supplement every time it falls.  We increase, he levels out ok, after 3-4 months it tanks again, up the amount of supplement, 3-4 months go by..... He is up to 75mg of iron supplement daily now.  They checked his vitamin D levels at the end of June and the ref range is 30-100 and he was at 31.  His last iron checks at that time were 

Component	Your Value	Standard Range
Iron	22 ug/dL	50-120 ug/dL
Transferrin	196 mg/dL	200-400 mg/dL
Total Iron Binding Cap	245 ug/dL	250-450 ug/dL
% Saturation	9 %	20-55 %

 

We did a repeat upper/lower scope.  Showed nothing more than a little irritation in the upper scope, but not enough to explain the anemia.  

We have ran Celiac panels

IgA on 4/7 was 31 and on 6/24 was 49 (ref range 25-160)

Ttg IgA on 4/7 was 1 and on 6/24 was 10 (ref range >20 mile positive)

I was diagnosed with Celiac in May so we ran the HLA typing

HLA-DQ2 (DQA1*05/DQB1*02).	Positive
HLA-DQ8 (DQA1*03/DQB1*0302)	Negative
HLA-DQA1	1
HLA-DQA1	5
HLA-DQB1	201
HLA-DQB1	602

 

Because his scopes, and Iga/Ttg all are negative they won't diagnose as Celiac of course.  We have an appt with hematology at the end of November.  However, since he has low vitamin levels as well it seems more "gut" related, not blood related.  His primary dr. still feels like it is likely Celiac and he could have small intestinal damage that just isn't visible on scopes.  She wants to have him go gluten-free for 6 months, recheck all his labs for iron/vitamins and see if there are improvements.   If so, then put him BACK on gluten for 3 months and repeat all the Celiac labs.  

Has anyone had a similarly traveled road with their little one in the process of getting a diagnosis? Have you found in your experience that they don't always show on scopes or labs until they get older? Any thoughts on perhaps taking him off gluten for so long, if then perhaps when he goes back on it might increase his lab values? Kind of like a shock to the system kind of thing? I hate to get him off gluten, find it clears up all the issues then have to put him back on, but I also am very familiar with the school system and doctors and know that a formal diagnosis should be done.  

I appreciate any thoughts! 

Thanks! 

[cyclinglady]

37 minutes ago, ravenu5 said:

My 4 yo son has had iron issues since he was 1.  At 2 he had upper and lower scopes done, both didn't show anything abnormal.  Treatment for his iron has been to increase his iron supplement every time it falls.  We increase, he levels out ok, after 3-4 months it tanks again, up the amount of supplement, 3-4 months go by..... He is up to 75mg of iron supplement daily now.  They checked his vitamin D levels at the end of June and the ref range is 30-100 and he was at 31.  His last iron checks at that time were 

Component	Your Value	Standard Range
Iron	22 ug/dL	50-120 ug/dL
Transferrin	196 mg/dL	200-400 mg/dL
Total Iron Binding Cap	245 ug/dL	250-450 ug/dL
% Saturation	9 %	20-55 %

 

We did a repeat upper/lower scope.  Showed nothing more than a little irritation in the upper scope, but not enough to explain the anemia.  

We have ran Celiac panels

IgA on 4/7 was 31 and on 6/24 was 49 (ref range 25-160)

Ttg IgA on 4/7 was 1 and on 6/24 was 10 (ref range >20 mile positive)

I was diagnosed with Celiac in May so we ran the HLA typing

HLA-DQ2 (DQA1*05/DQB1*02).	Positive
HLA-DQ8 (DQA1*03/DQB1*0302)	Negative
HLA-DQA1	1
HLA-DQA1	5
HLA-DQB1	201
HLA-DQB1	602

 

Because his scopes, and Iga/Ttg all are negative they won't diagnose as Celiac of course.  We have an appt with hematology at the end of November.  However, since he has low vitamin levels as well it seems more "gut" related, not blood related.  His primary dr. still feels like it is likely Celiac and he could have small intestinal damage that just isn't visible on scopes.  She wants to have him go gluten-free for 6 months, recheck all his labs for iron/vitamins and see if there are improvements.   If so, then put him BACK on gluten for 3 months and repeat all the Celiac labs.  

Has anyone had a similarly traveled road with their little one in the process of getting a diagnosis? Have you found in your experience that they don't always show on scopes or labs until they get older? Any thoughts on perhaps taking him off gluten for so long, if then perhaps when he goes back on it might increase his lab values? Kind of like a shock to the system kind of thing? I hate to get him off gluten, find it clears up all the issues then have to put him back on, but I also am very familiar with the school system and doctors and know that a formal diagnosis should be done.  

I appreciate any thoughts! 

Thanks! 

So, why didn't they run the full celiac panel?  Studies have shown that smaller kids can often test positive to the DGP tests vs. the TTG (Google it because I've got to get my kid off to school in a few minutes! )  Not to mention, that I test (even in follow-up tests) negative to the TTG tests, yet my biopsies revealed a Marsh Stage IIIB which is moderate to severe and anemia was my main symptom).    Ask for the complete panel, including the EMA.  

Also, is he gluten light?  My kid is.  She is not celiac, but we maintain a gluten-free household.  I try to give her pre-packaged foods for her school lunch, but when I preparing her for the entire celiac panel, I make sure she's consuming gluten daily for three months. 

Finally, no visible damage.  I had none.  None.  The damage to the villi is microscopic and that's why four to six biopsies are taken.  

Are you sure your GI knows what she is doing?  Why isn't she following the algorithm for diagnosing celiac patients (especially for peds)  and keeping up on current celiac research?  

[ravenu5]

Sorry, I should have specified that the biopsies from his upper/lower scope didn't show anything   Aside from some minor inflammation.  

I am also about to head out the door but will definitely look up the DGP test! I haven't heard of that one! His primary dr is all about ordering what ever tests we need to.  She wasn't familiar with the HLA testing but upon my request looked over what the test was for (keeping Celiac on the table or taking it off) and she ordered it.  I'll take a closer look at the DGP for sure! The EMA he did have done 2 years ago which came back negative.  Perhaps I'll ask for a repeat of that too. 

We honestly don't like his GI dr.  We didn't really care for her 2 years ago the first time he had scopes done, but with going down the GI road again 2 years later after no improvement with his iron, they scheduled it as a follow up with the same dr.  Or it was wait 3+ months for a new dr.  

We have a feeling hematology will kick us back to GI as we really don't think its a blood issue.  If so I do plan to see if we can see a different GI dr.  His current GI dr really seems to be anti-Celiac diagnosis for what ever reason. 

He eats full gluten at the moment.  I'm the only Celiac in the family at the moment so hubby and the 3 boys are all still on gluten.  He will switch to my side of the pantry when we take him gluten-free to see if it makes a difference. 

Thanks for the input and I'll do some more researching! 

[frieze]

ask your ped if they would give the dx with the improvement with dietary intervention alone, after all, years ago,, that WAS the test, lol.

[Fundog]

What other tests has the hematologist done?  How are his other blood values (mcv, cbc, leukocytes, neutrocytes, platelets, etc?)

[ravenu5]

23 hours ago, frieze said:

ask your ped if they would give the dx with the improvement with dietary intervention alone, after all, years ago,, that WAS the test, lol.

I was thinking about this!!! But we are military and I worry that when we move, whoever the new doctor is would think it wasn't accurate and probably still require trial/testing anyway :/ 

[ravenu5]

9 hours ago, Fundog said:

What other tests has the hematologist done?  How are his other blood values (mcv, cbc, leukocytes, neutrocytes, platelets, etc?)

His hematology appt actually isn't until the end of Nov.  His platelet count indicates the anemia though his hemoglobin is slower to lower.  Nothing out of range except for the platelet counts. 

Though his last CBC w/diff and CBC w/out diff

Component	Your Value	Standard Range
White Blood Cell Count	8.11 K/cu mm	5.50-15.50 K/cu mm
Red Blood Cell Count	4.49 M/cu mm	3.90-5.30 M/cu mm
Hemoglobin	12.2 g/dL	11.7-13.8 g/dL
Hematocrit	37.3 %	34.0-40.0 %
Mean Corpuscular Volume	83.1 fL	75.0-87.0 fL
Mean Corpus Hgb	27.2 pg	24.0-30.0 pg
Mean Corpus Hgb Conc	32.7 g/dL	31.0-37.0 g/dL
RBC Distribution Width	13.0 %	11.5-14.5 %
Platelet Count	406 K/cu mm	150-350 K/cu mm
Mean Platelet Volume	9.2 fL	9.2-12.7 fL
Nucleated RBC Number	0.00 K/cu mm	0.00-0.01 K/cu mm

This was his last CBC w/out diff but it was a couple weeks after his last iron increase so the new dose of iron was starting to help. 

Component Results

Component	Your Value	Standard Range
White Blood Cell Count	9.39 K/cu mm	5.50-15.50 K/cu mm
Red Blood Cell Count	4.39 M/cu mm	3.90-5.30 M/cu mm
Hemoglobin	12.2 g/dL	11.7-13.8 g/dL
Hematocrit	37.1 %	34.0-40.0 %
Mean Corpuscular Volume	84.5 fL	75.0-87.0 fL
Mean Corpus Hgb	27.8 pg	24.0-30.0 pg
Mean Corpus Hgb Conc	32.9 g/dL	31.0-37.0 g/dL
RBC Distribution Width	13.3 %	11.5-14.5 %
Platelet Count	358 K/cu mm	150-350 K/cu mm
Mean Platelet Volume	9.4 fL	9.2-12.7 fL
Nucleated RBC Number	0.00 K/cu mm	0.00-0.01 K/cu mm
Neutrophil %	54.4 %	27.0-55.0 %
Lymphocytes %	34.1 %	30.0-65.0 %
Monocyte %	8.8 %	3.0-9.0 %
Eosinophil %	2.0 %	1.0-4.0 %
Basophil %	0.5 %	0.0-2.0 %
Immature Gran %	0.2 %	0.0-1.0 %
Immature Grans = Promyelocytes + Myleocytes + Metamyelocytes
ANC-Neutrophil Absolute	5.10 K/cu mm	1.50-8.50 K/cu mm
Lymphcytes Absolute	3.20 K/cu mm	1.30-10.10 K/cu mm
Monocyte Absolute	0.83 K/cu mm	0.20-1.40 K/cu mm
Eosinophil Absolute	0.19 K/cu mm	0.12-0.30 K/cu mm
Immature Granulocytes Abs	0.02 K/cu mm	0.00-0.05 K/cu mm
Immature Grans = Promyelocytes + Myleocytes + Metamyelocytes