Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I think my son finally tested positive for celiac

jaggirl47
 Share

Recommended Posts

jaggirl47 Explorer
jaggirl47
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadycharacter Enthusiast
shadycharacter
Posted
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 Explorer
jaggirl47
Posted
  • Author
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 Explorer
jaggirl47
Posted
  • Author

I should also add that he is HLA DQ2 heterozygous 

knitty kitty Grand Master
knitty kitty
Posted

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 Explorer
jaggirl47
Posted
  • Author
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 Grand Master
knitty kitty
Posted

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! 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jaggirl47 Explorer
jaggirl47
Posted
  • Author
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 Grand Master
knitty kitty
Posted

@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 Explorer
jaggirl47
Posted
  • Author

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 Explorer
jaggirl47
Posted
  • Author

My son now has an appointment for GI on September 26

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,356
    • Most Online (within 30 mins)
      7,748
    Deb powell
    Newest Member
    Deb powell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      Weak positive blood test and marsh type 1

      By trents · Posted

      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
×
×
  • Create New...