Labs- is an EGD necessary?

[Kara H]

I recently screened my daughter for auto immune diseases and her levels came back positive for celiac disease but her EGD was negative, I wonder if I caught it early and she doesn't have the damage yet. We screened the entire household and we all have positive blood work for celiac disease now. We are all asymptomatic.  Is it really necessary to do an endoscopy on all of us?  If we all have labs with elevated levels isn't that enough to receive a diagnosis? My kids are 9, 4 and 3 and don't want to traumatize them if I don't have to. I attached a table showing our labs.

 

https://drive.google.com/file/d/1kRS8Bu8jSvOhbiCHUuFXYTmnyvq_m1ZB/view

[Kara H]

I recently screened my daughter for auto immune diseases and her levels came back positive for celiac disease but her EGD was negative, I wonder if I caught it early and she doesn't have the damage yet. We screened the entire household and we all have positive blood work for celiac disease now. We are all asymptomatic.  Is it really necessary to do an endoscopy on all of us?  If we all have labs with elevated levels isn't that enough to receive a diagnosis? My kids are 9, 4 and 3 and don't want to traumatize them if I don't have to. I attached a table showing our labs. **Note- we do not present any GI issues but have learned that celiac disease is linked to many health issues present in my family history.

Deamidated Gliadin Antibodies IGA  (*Person 1 is level 21)

Negative 0-19
WP 20-30
P >30

Deamidated Gliadin Antibodies IGG (*Person 1 is level 26. *Person 2 is level 6)

Negative 0-19
WP 20-30
P >30

Tissue Transglutaminase (TTG) IGA (*Person 1 is level 12. *Person 3 is level 53. *Person 4 is level 8)

Negative 0-3
WP 6-9
P >9

 

Tissue Transglutaminase (TTG) IGG (*Person 1 is level 5. *Person 2 is level 14. *Person 3 is level 80. *Person 4 is level 2)

Negative 0-5
WP 6-9
P>9

Endomysial Antibody, IGA (*Person 1 marked as positive)

https://drive.google.com/file/d/1kRS8Bu8jSvOhbiCHUuFXYTmnyvq_m1ZB/view

[trents]

It is a very interesting pattern of test results.

the tTG-IGA is considered the centerpiece of celiac antibody testing since it combines good sensitivity with good specificity, but not necessarily the best in either category. The other tests can be deficient in either of those two categories. The endomysial IGA is very specific for celiac disease but not very sensitive so when that one is elevated you can pretty much count on that person having celiac disease. That is the value of running more tests than just the tTG-IGA, especially with children. What the tTG-IGA might miss, one of the others might catch. Many physicians will only run the tTG-IGA, unfortunately.

One test that should have been run that wasn't was total serum IGA. If that is low, it can suppress the tTG-IGA to give a false negative.

Another factor in evaluating your family's test results is that children frequently show atypical test results because their immunes systems are immature. We often see negatives for the tTG-IGA with positives in other tests. 

It is also true there are some medical conditions and some medications than can cause mildly elevated tTG-IGA levels and that is whey physicians may be hesitant to conclude celiac disease with weak positives.

I would be pretty confident on declaring that Kara and Luke have active celiac disease, Kara because she has positive tTG-IGA and postive endomysial; Luke because both his tTG-IGA and tTG-IGG are strongly positive.

I take it Matt is your husband and he has not been tested? Squares are blank. There are no ages with the names. That would have been helpful.

Children not uncommonly show negative biopsies despite having positive antibody test scores. There bodies are so resilient. 

It is not uncommon for people with celiac disease to be asymptomatic, at least until villi or other systems become significantly damaged. We call that "silent" celiac disease and you may be correct that being asymptomatic means you have caught the disease early on.

There is a possibility that some of you may have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. NCGS is 10x more common than celiac disease. Regardless of which one of those is the culprit, they both require total abstinence from gluten. One plan might be to just forego the endoscopy/biopsy but commit to a gluten-free lifestyle and have the antibody levels checked again in six months or a year. At the end of the day it all boils down to eliminating gluten from your diet. 

Edited July 5, 2022 by trents

[Kara H]

  On 7/5/2022 at 8:42 PM, trents said:

It is a very interesting pattern of test results.

the tTG-IGA is considered the centerpiece of celiac antibody testing since it combines good sensitivity with good specificity, but not necessarily the best in either category. The other tests can be deficient in either of those two categories. The endomysial IGA is very specific for celiac disease but not very sensitive so when that one is elevated you can pretty much count on that person having celiac disease. That is the value of running more tests than just the tTG-IGA, especially with children. What the tTG-IGA might miss, one of the others might catch. Many physicians will only run the tTG-IGA, unfortunately.

One test that should have been run that wasn't was total serum IGA. If that is low, it can suppress the tTG-IGA to give a false negative.

Another factor in evaluating your family's test results is that children frequently show atypical test results because their immunes systems are immature. We often see negatives for the tTG-IGA with positives in other tests. 

It is also true there are some medical conditions and some medications than can cause mildly elevated tTG-IGA levels and that is whey physicians may be hesitant to conclude celiac disease with weak positives.

I would be pretty confident on declaring that Kara and Luke have active celiac disease, Kara because she has positive tTG-IGA and postive endomysial; Luke because both his tTG-IGA and tTG-IGG are strongly positive.

I take it Matt is your husband and he has not been tested? Squares are blank. There are no ages with the names. That would have been helpful.

Children not uncommonly show negative biopsies despite having positive antibody test scores. There bodies are so resilient. 

It is not uncommon for people with celiac disease to be asymptomatic, at least until villi or other systems become significantly damaged. We call that "silent" celiac disease and you may be correct that being asymptomatic means you have caught the disease early on.

There is a possibility that some of you may have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. NCGS is 10x more common than celiac disease.

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Thank you for all this! I am familiar with the IGA serum... our daughter has an IGA deficiency and has hashimotos- which is why she had the IGG levels ran.  Blanks do represent no test.  Camille 9, Luke 5, Boone 3. I am in my 30's.

I was told that NCGS does not elevate the levels, is that true? 

[trents]

I did some editing after your reply so you might want to re-read my post. So you must be Kara.

Have you had genetic testing done?

Edited July 5, 2022 by trents

[Kara H]

  On 7/5/2022 at 8:47 PM, trents said:

I did some editing after your reply so you might want to re-read my post.

Have you had genetic testing done?

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My brother did 23 and me and he carries the gene.  I have not had any testing done because we haven't noticed any health issues.  We are also plant-based eaters, and now gluten-free.

[trents]

What are you doing to get B12 in your diet?

At this point in time there have been two main genes identified as associated with celiac disease (DQ2 and DQ8) with evidence that some others may be involved at least at some level. There seems to be some correlation between having both genes or just one and the degree of sensitivity to gluten and the severity of reactions to it.

We know more about celiac disease than we do about NCGS. Currently, there are no tests for NCGS. Celiac disease must first be ruled out. Some experts feel that NCGS is or can be a preliminary stage of celiac disease. We do know that almost half the population caries one or both of the celiac main genes yet most never develop active celiac disease. It takes some kind of triggering stress event (such as a viral infection) to activate the genes.

[Kara H]

  On 7/5/2022 at 9:03 PM, trents said:

What are you doing to get B12 in your diet?

At this point in time there have been two main genes identified as associated with celiac disease (DQ2 and DQ8) with evidence that some others may be involved at least at some level. There seems to be some correlation between having both genes or just one and the degree of sensitivity to gluten and the severity of reactions to it.

We know more about celiac disease than we do about NCGS. Currently, there are no tests for NCGS. Celiac disease must first be ruled out. Some experts feel that NCGS is or can be a preliminary stage of celiac disease. We do know that almost half the population caries one or both of the celiac main genes yet most never develop active celiac disease. It takes some kind of triggering stress event (such as a viral infection) to activate the genes.

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The trigger- we had covid in October. Since then, my daughter has been diagnosed with hashimotos and now all our labs are concerning for celiac even though we don't have symtpoms 

  On 7/5/2022 at 9:14 PM, Kara H said:

The trigger- we had covid in October. Since then, my daughter has been diagnosed with hashimotos and now all our labs are concerning for celiac even though we don't have symtpoms 

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Also, b12 is in fruits/veggies and in our multivitamin. We started plant based when we learned of my daughter being prone to auto immune diseases

[trents]

As you probably know by now, there is a statistically higher incidence of Hashimotos in the celiac population than in the general population. Autoimmune diseases tend to cluster. 

Make sure all your meds and supplements are gluten-free. Sometimes wheat starch is used as a filler in pills.

[Kara H]

  On 7/5/2022 at 9:18 PM, trents said:

As you probably know by now, there is a statistically higher incidence of Hashimotos in the celiac population than in the general population. Autoimmune diseases tend to cluster. 

Make sure all your meds and supplements are gluten-free. Sometimes wheat starch is used as a filler in pills.

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Thank you! Yes, I'm aware the the link which is why I am here to continue learning and advocate. I want to raise the kids and show them there is still my ways to make delicious food. I've cleaned out the entire kitchen and replaced necessary items, almost mastered the kids pizza and cupcakes... but the pills, soaps, lotions I'm having a hard time- do you suggest just googling every product? Ah! 🤪

[trents]

Googling can sometimes give helpful gluten info about products. Something like, "Is xxxxx gluten free?" Many foods, medicines and personal hygiene products have actually been tested by celiac groups. I find the best way is to contact the manufacturer and just ask them. Often you will get answers like, "We don't intentionally add gluten to the product but we can't guarantee no cross contamination." You just do the best you can and get the most info you can. There is a list somewhere on this forum of gluten free medications but it will be far from complete.

[Scott Adams]

Here is a site where you can search medications and see their ingredients...just look for the inactive ingredients:

https://dailymed.nlm.nih.gov/dailymed/ 

[Kara H]

  On 7/5/2022 at 10:15 PM, Scott Adams said:

Here is a site where you can search medications and see their ingredients...just look for the inactive ingredients:

https://dailymed.nlm.nih.gov/dailymed/ 

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My 4 year old had his EGD done, they found patchy erythema of the mucosa. Have you seen this as an early sign of celiac disease? No visible damage yet but we are waiting in biopsy

 

[trents]

  On 7/11/2022 at 1:47 PM, Kara H said:

My 4 year old had his EGD done, they found patchy erythema of the mucosa. Have you seen this as an early sign of celiac disease? No visible damage yet but we are waiting in biopsy

 

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Where was the erythema? Esophagus, stomach or duodenum?

Edited July 11, 2022 by trents

[Kara H]

  On 7/11/2022 at 1:58 PM, trents said:

Where was the erythema? Esophagus, stomach or duodenum?

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Duodenum 

[trents]

Erythema would indicate inflammation is going on and in the area of the bowel that celiac disease affects. Persistent inflammation is what damages the villi that line the duodenum/duodenum bulb. So, yes. I would think this is an indicator of possible/probable celiac disease. If there proves to be not much indication of actual damage to the villi then it could indicate it was caught at an early stage.

[Kara H]

  On 7/11/2022 at 2:07 PM, trents said:

Erythema would indicate inflammation is going on and in the area of the bowel that celiac disease affects. Persistent inflammation is what damages the villi that line the duodenum/duodenum bulb. So, yes. I would think this is an indicator of possible/probable celiac disease. If there proves to be not much indication of actual damage to the villi then it could indicate it was caught at an early stage.

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Thank you! This was my thinking as well. I have 1 more question- Can you have celiac disease if you do not carry the gene for celiac? 

 

[trents]

  On 7/11/2022 at 2:11 PM, Kara H said:

Thank you! This was my thinking as well. I have 1 more question- Can you have celiac disease if you do not carry the gene for celiac? 

 

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The genetics of celiac disease is in flux. So far, researchers have identified two main genes associated with celiac disease and are discovering other genes that play a part in the development of celiac disease. I believe we have seen some anecdotal evidence on the forum of people who do not have either of the two main genes (DQ1, DQ8) but have, or seem to have, celiac disease. Has your daughter had any genetic testing done?

By the way, B12 is not found in fruits and veggies. The only known vegetable sources of B12 are in some fermented bean products. There is a certain bacteria found in the gut of ruminants that does produce B12 from ingested plant matter but this bacteria is not found in the human gut. This bacteria is used to produce B12 commercially from plant sources. At least this is my understanding and I have researched that recently.

Edited July 11, 2022 by trents