I think my son finally tested positive for celiac

[jaggirl47]

It has been probably 10 years since I last posted, but my son now has an amazing GP who redid the celiac blood tests. His DGP tests came back with the following:

IGA <10, negative 

IgG 47.5 HIGH (<20 normal)

in addition, he also has anemia that is not caused by iron deficiency, and his B12 levels are normal, but at the extreme low end of normal.

when we went through testing years ago, it was a fight with the pediatricians and GI doctors in attempts to get proper testing done. In addition, we also found out following a recent CT scan that he has annular pancreas, and has suffered since birth from this. 

The doctors, years ago, actually called social services on me for trying to get proper care for my son, so between his CT scan and blood tests it almost feels like vindication.

What are the next steps we need to take?

[shadycharacter]

22 hours ago, jaggirl47 said:

It has been probably 10 years since I last posted, but my son now has an amazing GP who redid the celiac blood tests. His DGP tests came back with the following:

IGA <10, negative 

IgG 47.5 HIGH (<20 normal)

in addition, he also has anemia that is not caused by iron deficiency, and his B12 levels are normal, but at the extreme low end of normal.

when we went through testing years ago, it was a fight with the pediatricians and GI doctors in attempts to get proper testing done. In addition, we also found out following a recent CT scan that he has annular pancreas, and has suffered since birth from this. 

The doctors, years ago, actually called social services on me for trying to get proper care for my son, so between his CT scan and blood tests it almost feels like vindication.

What are the next steps we need to take?

A borderline low b12 could be followed up with a test for MMA (methyl malonic acid) which may be elevated when b12 is low. 

[jaggirl47]

32 minutes ago, shadycharacter said:

A borderline low b12 could be followed up with a test for MMA (methyl malonic acid) which may be elevated when b12 is low. 

His primary care wrote in the notes that while it was in the normal ranges, she wanted to see what all of the other results come back with. He may have had that test done.

 

His tTG levels came back yesterday afternoon, and are as follows:

 

tTG IGA <1.2 negative (normal <4

tTG IgG 3.4 negative (normal <6)

 

if I recall correctly, his total IGA 10 years ago was in the normal range, but it was at the extreme low end of the range. His GI doctors at the time yelled at me for wanting IgG testing done and told me he cannot be celiac because his IGA was in the normal range and the IGA specific blood panels came back as normal. When he had his endoscopy, the doctor felt that he didn’t need to take samples for biopsy because it looked fine to him in there. He only ended up taking 2 samples from the duodenal bulb, and 2 samples from the esophagus. His 2 from the duodenum were normal, but his esophagus showed eosinophilic esophagus.

 

The only time his bloodwork has not shown anemia and vit D deficiency is when he was on a gluten free diet. He is 22 now, and 3-4” below his genetic adult height expectations. From the age of 3-5, he did not grow a single inch or gain a single pound, dropping from the 90th percentile to the 5th percentile.

[jaggirl47]

I should also add that he is HLA DQ2 heterozygous 

[knitty kitty]

Those are definitely Celiac genes and with improvement on a gluten free diet, I'd say that's a Celiac diagnosis.  It's how I was finally diagnosed.  

Anemia or Diabetes can cause false negatives on blood tests for Celiac.  I have Type Two Diabetes.  

Correcting nutritional deficiencies was a beneficial step for me.  I was low in Vitamin D, and the B Complex vitamins, and minerals like magnesium.  I found Benfotiamine (a form of Thiamine B1) helpful in improving symptoms and beneficial in healing.

Talk to your doctor about checking for deficiencies and supplementing with B vitamins.

Best wishes! Keep us posted on your progress!

[jaggirl47]

32 minutes ago, knitty kitty said:

Those are definitely Celiac genes and with improvement on a gluten free diet, I'd say that's a Celiac diagnosis.  It's how I was finally diagnosed.  

Anemia or Diabetes can cause false negatives on blood tests for Celiac.  I have Type Two Diabetes.  

Correcting nutritional deficiencies was a beneficial step for me.  I was low in Vitamin D, and the B Complex vitamins, and minerals like magnesium.  I found Benfotiamine (a form of Thiamine B1) helpful in improving symptoms and beneficial in healing.

Talk to your doctor about checking for deficiencies and supplementing with B vitamins.

Best wishes! Keep us posted on your progress!

Hold on, anemia can cause false negatives???

[knitty kitty]

Yes.  Here's an article from the National Institute of Health....

 

Hemolysis and IgA‐antibodies against tissue transglutaminase: When are antibody test results no longer reliable?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6816937/

And another type of anemia...

Celiac Disease With Autoimmune Hemolytic Anemia and Autoimmune Hepatitis in a Young Child: Case Report and Literature Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9425893/

Hope this helps! 

[jaggirl47]

59 minutes ago, knitty kitty said:

Yes.  Here's an article from the National Institute of Health....

 

Hemolysis and IgA‐antibodies against tissue transglutaminase: When are antibody test results no longer reliable?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6816937/

And another type of anemia...

Celiac Disease With Autoimmune Hemolytic Anemia and Autoimmune Hepatitis in a Young Child: Case Report and Literature Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9425893/

Hope this helps! 

I have not read the second link yet, but that first link explains so much! Especially in correlation with a potentially incorrect low tTG IGA but a rather high DGA IgG. This makes me even more upset that the previous doctors never pulled his IgG levels, and solely tested the IGA.

[knitty kitty]

@jaggirl47,

My heart breaks for you.  You were right all along.  Things will get better now.  

Look into the Autoimmune Paleo Diet.  It really helped me recover.  The Paleo Approach by Dr. Sarah Ballantyne is a very helpful book.  Dr. Ballantyne, a Celiac herself, designed the diet for herself and her Celiac children.  It's been studied and shown to promote healing in the intestines. 

Correcting nutritional deficiencies is really important, too.  Dr. Ballantyne's book includes nutritional information.  Being deficient in the B Complex vitamins is common in Celiac Disease.  Talk to your doctor or nutritionist about supplementing. 

Many studies show that higher levels of B vitamins have beneficial health effects.  The B Complex vitamins are water soluble so any not utilized is easily excreted in urine.  Unabsorbed Riboflavin Vitamin B 2 makes urine florescent green, (yup, it'll glow under black light!), so that's normal.  Benfotiamine, a form of Thiamine B1, has been shown to promote intestinal healing.  Visit Dr. Derrick Lonsdale and Dr. Chandler Marrs' website hormones matter.com for Thiamine benefits.

[jaggirl47]

We are going to wait to change diet until he sees the GI and has a biopsy done. Right now I’m trying to find a GI specialist that goes off of more than just tTG and EMA test results.

[jaggirl47]

My son now has an appointment for GI on September 26