Possible Celiac?

[CeliMomi]

My 12 year old just got her labs back. Her pediatrician is sending her to a GI Specialist for celiac. Any insight as to whether or not she has it?

[trents]

Nothing that stands out there with regard to celiac disease but testing for children often gives different results than for adults and is more nuanced. Is she having symptoms that would suggest celiac disease?

She has some values for her blood cells that are a little out of whack but borderline. And then there is the platelet clumping which can be caused by irregularities in the collecting of the sample or by infection. Could be a slight infection of some kind going on there.

[CeliMomi]

She has been struggling with low iron and has been on supplements for the last year. Every time we do labs, her CBC results are slightly off and CRP is high. She is constipated often and gets tummy aches. 

[trents]

Iron supplements can be hard on the gut and cause constipation.

Has she been checked for pernicious anemia? That is caused by the inability to assimilate B12 due to a lack of something known as "intrinsic factor."

[CeliMomi]

No other testing has been done. I’m hoping the specialist will have more insight to additional possibilities. What would cause her Deaminated IgG to be so high?

[trents]

I must correct myself from what I said in the first post. the high Deaminated IgG can be an indication of celiac disease. The TtG-IGA is considered the most reliable indicator of celiac disease in adults, being the test that combines great specificity for celiac disease with good but not great sensitivity. And that was not positive in your daughter's case. The Deaminated IgG is a secondary test that can be used to get a clearer picture, especially when the TtG-IGA is negative but symptoms strongly point to celiac disease or with children whose immature immune systems may not behave like those of adults with regard to testing conventions.

[trents]

The gold standard for celiac disease diagnosis is the endoscopy with biopsy of the small bowel to check for damaged villi. The GI specialist may recommend that.

By the way, so do you or other family members have diagnosed celiac disease? If so, realize that there is a 44% chance that someone will develop active celiac disease if a first degree relative has active celiac disease.

[CeliMomi]

13 minutes ago, trents said:

The gold standard for celiac disease diagnosis is the endoscopy with biopsy of the small bowel to check for damaged villi. The GI specialist may recommend that.

By the way, so do you or other family members have diagnosed celiac disease? If so, realize that there is a 44% chance that someone will develop active celiac disease if a first degree relative has active celiac disease.

No worries! I appreciate any feedback I can get. She has an appointment next week and I am expecting the biopsy to be our next step. 
No one in our family has been diagnosed with Celiac but that doesn’t mean someone doesn’t have it.

[trents]

Well, if it turns out that your daughter does have celiac disease it would be a good idea to get all first degree relatives (you, father of the child and siblings of the child) tested . You also would need to look at converting your house to a gluten free environment. It can be extremely difficult to keep a celiac family member safe when others in the household are cooking and eating gluten containing food products. There is typically a huge issue with cross contamination and even eating gluten containing food by mistake if they are in the area.

Edited June 4, 2021 by trents

[CeliMomi]

5 minutes ago, trents said:

Well, if it turns out that your daughter does have celiac disease it would be a good idea to get all first degree relatives (you, father of the child and siblings of the child) tested . You also would need to look at converting your house to a gluten free environment. It can be extremely difficult to keep a celiac family member safe when others in the household are cooking and eating gluten containing food products. There is typically a huge issue with cross contamination and even eating gluten containing food by mistake if they are in the area.

Will do. One of my coworkers has a husband and child with Celiac and has been a great resource this far. I appreciate your help

[trents]

Having the genetic markers for celiac disease does not guarantee that one will ever develop an active case of celiac disease. Many or most who have the genes do not develop the active form of the disease. It also takes a triggering stress event that turns the genetic potential for the disease into the active form of the disease. A triggering stress event may be some kind of viral infection or a serious life trauma. That part is poorly understood by medical science at this point in time. It is also important to realize that those with the genetic potential for celiac disease may develop the active form at any time. So, testing negative today for those folks does not rule out developing the active form down the road. However, the testing is still valuable in that if someone else in the family has the active form but is largely asymptomatic it could catch it early before serious damage to body systems is done, something that often happens from living with undiagnosed celiac disease for many years.

Edited June 4, 2021 by trents

[Scott Adams]

3 hours ago, CeliMomi said:

My 12 year old just got her labs back. Her pediatrician is sending her to a GI Specialist for celiac. Any insight as to whether or not she has it?

Welcome to the forum @CeliMomi. I see 3 red flags with these results:

1) The very high positive for her Deamidated gluten antibody (DMG) test, which is very specific for celiac disease;

2) The high white blood cell count can indicate an autoimmune reaction is taking place;

3) Her low iron and very low iron saturation are a very common symptom in those with celiac disease, and could be caused by villi damage.

If you doctor want to do a biopsy (they may be able diagnose her without an endoscopy, as they do this in children more often nowadays), then she needs to continue eating gluten until that's finished.

[CeliMomi]

42 minutes ago, Scott Adams said:

Welcome to the forum @CeliMomi. I see 3 red flags with these results:

1) The very high positive for her Deamidated gluten antibody (DMG) test, which is very specific for celiac disease;

2) The high white blood cell count can indicate an autoimmune reaction is taking place;

3) Her low iron and very low iron saturation are a very common symptom in those with celiac disease, and could be caused by villi damage.

If you doctor want to do a biopsy (they may be able diagnose her without an endoscopy, as they do this in children more often nowadays), then she needs to continue eating gluten until that's finished.

Thank you, Scott. I’m hopeful to get a diagnosis quickly without too much testing. It’s been a long road of dealing with her Low Iron and it will be nice to finally have some answers.

[Posterboy]

8 hours ago, CeliMomi said:

She has been struggling with low iron and has been on supplements for the last year. Every time we do labs, her CBC results are slightly off and CRP is high. She is constipated often and gets tummy aches. 

CeliMom,

See this thread about things you can do for your daughters Anemia....

It is a thread specifically about Anemia...

You might want to read some  of my Posterboy blog post(s) as well....

I wrote about my experience....with Low Stomach acid going misdiagnosed/undiagnosed....

There are 20+ posts.....maybe at least one will be able to help your daughter....

And from another thread recently....on Thiamine....

Taking some Magnesium as Magnesium Citrate and Benfotiamine a Fat Soluble Vitamin B1 have both been shown to treat High C Reactive Protein levels aka CRP.

quoting

"I came across research on Thiamine that I thought you would enjoy.

Entitled "The Effect of Benfotiamine on High Sensitivity-CRP (hs-CRP) Level In Patients with Type 2 Diabetes Mellitus"

IE the damage caused by high C reactive proteins can be controlled by Benfotiamine in Type 2 Diabetics.

https://professional.diabetes.org/abstract/effect-benfotiamine-high-sensitivity-crp-hs-crp-level-patients-type-2-diabetes-mellitus

It is amazing how much suffering could be avoided if more people knew about the Power of Magnesium and Thiamine to  heal all kinds of medical problems.

The same research has been found to be true for Magnesium as well!

Entitled "Relationship between serum magnesium levels and C-reactive protein concentration, in non-diabetic, non-hypertensive obese subjects"

https://www.nature.com/articles/0801954

This research is 15 to 20 year often and still people are still suffering from conditions that can be treated with a Vitamin (Thiamine) and Mineral (Magnesium) because doctor's don't know these connections."

I hope this is helpful but it is not medical advice.

Posterboy,

[CeliMomi]

11 hours ago, Posterboy said:

CeliMom,

See this thread about things you can do for your daughters Anemia....

It is a thread specifically about Anemia...

You might want to read some  of my Posterboy blog post(s) as well....

I wrote about my experience....with Low Stomach acid going misdiagnosed/undiagnosed....

There are 20+ posts.....maybe at least one will be able to help your daughter....

And from another thread recently....on Thiamine....

Taking some Magnesium as Magnesium Citrate and Benfotiamine a Fat Soluble Vitamin B1 have both been shown to treat High C Reactive Protein levels aka CRP.

quoting

"I came across research on Thiamine that I thought you would enjoy.

Entitled "The Effect of Benfotiamine on High Sensitivity-CRP (hs-CRP) Level In Patients with Type 2 Diabetes Mellitus"

IE the damage caused by high C reactive proteins can be controlled by Benfotiamine in Type 2 Diabetics.

https://professional.diabetes.org/abstract/effect-benfotiamine-high-sensitivity-crp-hs-crp-level-patients-type-2-diabetes-mellitus

It is amazing how much suffering could be avoided if more people knew about the Power of Magnesium and Thiamine to  heal all kinds of medical problems.

The same research has been found to be true for Magnesium as well!

Entitled "Relationship between serum magnesium levels and C-reactive protein concentration, in non-diabetic, non-hypertensive obese subjects"

https://www.nature.com/articles/0801954

This research is 15 to 20 year often and still people are still suffering from conditions that can be treated with a Vitamin (Thiamine) and Mineral (Magnesium) because doctor's don't know these connections."

I hope this is helpful but it is not medical advice.

Posterboy,

Thank you for the articles. I will definitely be looking into it more.

[DJFL77I]

IGG is high.... she has celiac most probably

[CeliMomi]

On 6/4/2021 at 1:28 PM, Scott Adams said:

Welcome to the forum @CeliMomi. I see 3 red flags with these results:

1) The very high positive for her Deamidated gluten antibody (DMG) test, which is very specific for celiac disease;

2) The high white blood cell count can indicate an autoimmune reaction is taking place;

3) Her low iron and very low iron saturation are a very common symptom in those with celiac disease, and could be caused by villi damage.

If you doctor want to do a biopsy (they may be able diagnose her without an endoscopy, as they do this in children more often nowadays), then she needs to continue eating gluten until that's finished.

Biopsy came back negative. Should I push to have a DNA test?

 

On 6/4/2021 at 11:34 AM, trents said:

Well, if it turns out that your daughter does have celiac disease it would be a good idea to get all first degree relatives (you, father of the child and siblings of the child) tested . You also would need to look at converting your house to a gluten free environment. It can be extremely difficult to keep a celiac family member safe when others in the household are cooking and eating gluten containing food products. There is typically a huge issue with cross contamination and even eating gluten containing food by mistake if they are in the area.

Biopsy came back negative. Do you recommend getting the DNA test for her?

[Scott Adams]

If this isn't a financial issue, I would get a DNA test, and if @CeliMomi got their child's biopsy results back, and they are negative, I would still suspect non-celiac gluten sensitivity, and consider consulting with the doctor about trying a gluten-free diet. The positive tests, and symptoms going away on a GFD, would likely confirm gluten sensitivity.

[trents]

Agree with Scott. Only I didn't think NCGS would give positive antibody tests. Haven't we been saying that there currently is no test for NCGS? Or do we mean to say there is no test to distinguish it from celiac disease apart from a biopsy?

The other possibility is that she dies does have celiac disease but the biopsy was not done well or done thoroughly. Damage to the villi can be spotty. We have certainly had posters report that experience on the forum.

Edited June 16, 2021 by trents

[CeliMomi]

I'm hoping with my daughters double coverage with insurance the financial aspect may not be an issue. 

[Scott Adams]

I think celiac disease is still more likely, however, I do know that a doctor is unlikely to make this diagnosis given a negative biopsy. So where does this leave patients? In my brother's case, that was very similar to this, they told him "good news, no celiac disease so you don't have to go gluten-free!" This happens often, even with positive blood tests (and negative biopsy), or blood tests that are elevated but not over the marker for celiac disease. Gluten sensitivity is gluten sensitivity, not matter how you slice it, and the treatment for it is the same, a gluten-free diet.

[CeliMomi]

14 minutes ago, trents said:

Agree with Scott. Only I didn't think NCGS would give positive antibody tests. Haven't we been saying that there currently is no test for NCGS? Or do we mean to say there is no test to distinguish it from celiac disease apart from a biopsy?

The other possibility is that she dies have celiac disease but the biopsy was not done well or done thoroughly. Damage to the villi can be spotty. We have certainly had posters report that experience on the forum.

I’m definitely confused as to how there can be a positive DGP IgG but not have celiac.

[trents]

That confuses me too. I certainly would not close the door on celiac disease but as Scott said, either way, the antidote is the same. In my mind, the main difference would be in the social realm. Celiac disease has a little more definiteness to it and sounds more like a real disease to those not in the know.

[ZNagy]

I agree that the likelihood that your daughter has celiac disease is still very high. I may have missed it, but does anyone else in the family have an autoimmune disease? Most commonly in people with celiac disease there is a personal or family history of Hashimoto’s (the #1 cause of under active thyroid (hypothyroidism). Others would be B12 deficiency (pernicious anemia), vitiligo (patchy loss of pigment-containing cells in the skin). The far less common would include things like type 1 diabetes, rheumatoid arthritis, lupus, etc. If there’s a family history of autoimmune disease, I’d be 99.99% positive that this is celiac. As people have said, symptoms often precede positive biopsy results. Also, the duodenal biopsy has to be done correctly (minimum of six samples each at least 1 cm apart), and the subtle findings of may be missed by a pathologist who isn’t an expert in gastrointestinal disease pathology. 

[CeliMomi]

22 minutes ago, ZNagy said:

I agree that the likelihood that your daughter has celiac disease is still very high. I may have missed it, but does anyone else in the family have an autoimmune disease? Most commonly in people with celiac disease there is a personal or family history of Hashimoto’s (the #1 cause of under active thyroid (hypothyroidism). Others would be B12 deficiency (pernicious anemia), vitiligo (patchy loss of pigment-containing cells in the skin). The far less common would include things like type 1 diabetes, rheumatoid arthritis, lupus, etc. If there’s a family history of autoimmune disease, I’d be 99.99% positive that this is celiac. As people have said, symptoms often precede positive biopsy results. Also, the duodenal biopsy has to be done correctly (minimum of six samples each at least 1 cm apart), and the subtle findings of may be missed by a pathologist who isn’t an expert in gastrointestinal disease pathology. 

I’m currently awaiting celiac labs for myself since I have low iron and b12. Also wouldn’t be surprised if my dad has it. He has struggled with stomach issues his who life but has never sought treatment.
 

They took 4 samples; one in the duodenum, one in the duodenal bulb, one in the antrum body, and one in the Lower esophagus.