Need help interpreting daughter's celiac panel

[Ksolo]

Hi! I'm new here. Just two weeks ago, we had my 10-year-old daughter tested for a gluten allergy. The result came back with a "weak positive" celiac, which caught us by surprise. 

This was the heading: CELIAC DX, WK TTG - Details

Gliadin IgA AntibodyYour Value5 U/mLStandard Range<15 U/mL

Gliadin Ab IgA InterpretationYour ValueNegativeStandard RangeNegative

...

Celiac ALGORITHM 

IgAYour Value124 mg/dLStandard Range35 - 250 mg/dL

...

**This is why I'm confused**

*Celiac Diagnosis, Norm or Elev IgA - Details

*TTGAYour Value28 U/mLStandard Range<15 U/mLFlagH

*TTGA InterpYour ValuePositiveStandard RangeNegativeFlagA

And then I got this messgae:

**Comments from the Doctor's Office:

"L's (my daughter) initial celiac testing was abnormal, but the followup was normal. This is not urgently worrisome, but we will need to wait until GI appointment for further interpretation. Please call our office in the meantime if there are further concerns."

 

I was hoping for answers to gluten, not this 😭 My doctor said she wanted to refer us to a specialist, and the specialist thinks we need to do a biopsy (endoscopy), with those numbers. I have also been reading that biopsy is not the gold standard for a diagnosis, and we are just hesitant to do it, especially with such low numbers. But I can't find anything on this. Of course, when it comes down to it we would have the biopsy done. Just want to be sure those numbers are truly inconclusive enough. 

[trents]

The biopsy is not fool proof. There are times when the disease is caught at an early stage or there is a different type of celiac response such as dermatitis herpetiformis. Sometime the damage to the small bowel villi is patchy and the biopsy misses an affected area. The latter can happen when the one doing the scoping is not experienced with celiac diagnosis. But the biopsy is still considered the most reliable indicator of celiac disease and in that sense is still the gold standard.

By the way, let me correct you on something you said in your post. Celiac disease cannot be diagnosed by allergy testing because it is not an allergy. It is an autoimmune disorder and engages a completely different pathway than do allergies. Having said that, a person can be allergic to gluten just like they can to any protein.

Did your daughter have a second blood antibody test. There is mention of follow-up being normal. What was the follow-up?

Edited February 2, 2022 by trents

[Ksolo]

Thank you for the reply. I feel the same...my husband and I feel we will feel more at peace with a biopsy for defintite answers. However, I'm just confused about the numbers. 

And no clue what the follow up was! I wondered if the follow up was a more in depth test?? I'm so confused. The specialist did not mention the note or a follow up at all, and it only became visible to me after the specialist appointment. 

The doctor ordered the blood test for allergy, and also did a celiac ALGORITHM,  but I don't think a full panel was ordered (Unless that was the "follow up"??) And honestly, I'd rather do that before a full biopsy. What are your thoughts?

[trents]

I'm not sure what he meant by a "celiac algorithm" but he did order some IGA testing. The centerpiece of the IGA testing is the tTG-IGA which is considered the best combination of sensitivity and specificity. That test was positive according to the what you posted in your original post. The value was 28 and the high end of normal was 15. There are some other things that can cause a positive tTG-IGA but they are pretty rare. Perhaps this will be of help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

IGG tests can also be helpful in diagnosing celiac disease sometimes, especally when total IGA is low.

"but the follow-up was normal." I took that to mean there was another blood draw. Do you remember another office visit and blood draw?

The other option is to assume your daughter has celiac disease and start her on a gluten free diet. If her symptoms improve, wouldn't that be the proof of the pudding? But truly eating gluten free is a challenge that most people are not prepared for as they don't realize how and where gluten is tucked away in the mainstream food supply and they aren't prepared for the social changes it demands.

The other factoid you need to be aware of is that others in your family might have celiac disease. A recent large study conducted by the Mayo Clinic found that 44% of the first degree relatives of those diagnosed with celiac disease were also found to have celiac disease when checked with biopsies. That number is much higher than most other studies done earlier which had found more like 10%. First degree relatives: parents, siblings, children. So, it might be a good idea to have everyone in your family tested, even if they seem to be asymptomatic. Many celiacs are asymptomatic until the disease has progressed into advanced stages and by then damage has been done to other body systems.

[Ksolo]

10 minutes ago, trents said:

I'm not sure what he meant by a "celiac algorithm" but he did order some IGA testing. The centerpiece of the IGA testing is the tTG-IGA which is considered the best combination of sensitivity and specificity. That test was positive according to the what you posted in your original post. The value was 28 and the high end of normal was 15. There are some other things that can cause a positive tTG-IGA but they are pretty rare. Perhaps this will be of help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

IGG tests can also be helpful in diagnosing celiac disease sometimes, especally when total IGA is low.

"but the follow-up was normal." I took that to mean there was another blood draw. Do you remember another office visit and blood draw?

The other option is to assume your daughter has celiac disease and start her on a gluten free diet. If her symptoms improve, wouldn't that be the proof of the pudding? But truly eating gluten free is a challenge that most people are not prepared for as they don't realize how and where gluten is tucked away in the mainstream food supply and they aren't prepared for the social changes it demands.

The other factoid you need to be aware of is that others in your family might have celiac disease. A recent large study conducted by the Mayo Clinic found that 44% of the first degree relatives of those diagnosed with celiac disease were also found to have celiac disease when checked with biopsies. That number is much higher than most other studies done earlier which had found more like 10%. First degree relatives: parents, siblings, children. So, it might be a good idea to have everyone in your family tested, even if they seem to be asymptomatic. Many celiacs are asymptomatic until the disease has progressed into advanced stages and by then damage has been done to other body systems.

So you're saying her 28 ttga was definitely high (not a weak positive  like I had assumed), and her iga seems low? If so, that makes sense and confirms a lot about going forward with a biopsy. We are between a rock and a hard place now: take her off gluten for now and note any improvement, then put her back on it for a month, and have the biopsy scheduled. Or, like you said, assume for the rest of her life she has celiac, replace all of her skin products, food, etc with gluten-free. We are willing to do that as well, although. we would never know if she is auto-immune, which would definitely be nice to know. 

Thanks for the link you posted. I will be sure and read it.

This mysterious follow up: we did not go in for more blood draw. I submitted a question to the specialist this evening, since the message was unfortunately not there when we met. 

[Ksolo]

Ok...back from reading the link. Im super surprised the specialist didn't order another, more in depth blood test after learning a bit more from these results. Her EMA result was negative, I saw that, and thats worth considering. But there was no other results for the rest of the tests that could be done on a second blood draw. Would it be worth requesting this, or just jump right to the endoscopy? Again, risking not enough biopsy from the right place at the right time...especially without a celiac panel done?

[trents]

Her IGA is in the middle of the normal range: IgAYour Value124 mg/dLStandard Range35 - 250 mg/dL. It is not low. If total IGA is low it can create a downward skew of individual IGA values, i.e, can result in false negatives. That is one case scenario when doing IGG testing can be helpful. It can catch celiac in those cases.

It is not uncommon for children to have variability in their IGA values. There immune systems are not yet mature. They are also very resilient. What symptoms was she having that would suggest celiac disease? I assume there were symptoms that prompted all this testing.

Her tTG-IGA is not dramatically high but IMO it is not equivocal either.

Another course of action would be to have genetic testing done. There are two  genes that have been associated with celiac disease and the Israelis are investigating a possible third gene. If she does not have either one of the two genes she probably is not a candidate for a celiac diagnosis. But people who have the genes may never develop active celiac disease. It takes the genes and a stress trigger such as a viral infection.

[trents]

I do not have a clear recommendation for you with regard to the biopsy. If she is asymptomatic you might just wait another year and get antibody testing done again. If she has symptoms and is in distress I would either trial a gluten free diet or move forward with the biopsy.

[trents]

One thing to keep in mind is that there is a lot of general ignorance about celiac disease in the medical community. Even among some GI docs if they are older and been out of med school for a long time. Those of us in the celiac community have come to realize we need to arm ourselves with knowledge and be assertive if needed testing is to get done. If docs get defensive, get another doc.

[Scott Adams]

2 hours ago, Ksolo said:

*TTGA Your Value 28 U/mLStandard Range<15 U/mLFlagH

I would just add that if it were my daughter, no matter what the endoscopy results were, I'd start her on a gluten-free diet. The TTG blood test is very specific for celiac disease, and is over 97% accurate at diagnosing it.

The article below may be helpful:

Quote

Recently, (1998) the endomysial antigen targeted by the anti-endomysial antibodies was identified as the protein cross-linking enzyme known as tissue transglutaminase (tTG). This has enabled the production of an antigen specific ELISA assay incorporating tTG as a reliable and objective alternative to the traditional and subjective Immunofluorescence based assays. In clinical trials, the correlation with the endomysial IFA assay has been shown to be close to 100%. This is a test that has been very well received in the professional community. It is an ELISA, like the anti-gliadin antibody test and, as such, is not subject to interpretation like the IFA.

 

[Ksolo]

1 hour ago, trents said:

Her IGA is in the middle of the normal range: IgAYour Value124 mg/dLStandard Range35 - 250 mg/dL. It is not low. If total IGA is low it can create a downward skew of individual IGA values, i.e, can result in false negatives. That is one case scenario when doing IGG testing can be helpful. It can catch celiac in those cases.

It is not uncommon for children to have variability in their IGA values. There immune systems are not yet mature. They are also very resilient. What symptoms was she having that would suggest celiac disease? I assume there were symptoms that prompted all this testing.

Her tTG-IGA is not dramatically high but IMO it is not equivocal either.

Another course of action would be to have genetic testing done. There are two  genes that have been associated with celiac disease and the Israelis are investigating a possible third gene. If she does not have either one of the two genes she probably is not a candidate for a celiac diagnosis. But people who have the genes may never develop active celiac disease. It takes the genes and a stress trigger such as a viral infection.

Ok, we did talk about doing the genetic testing for her. Thanks for listening, by the way. I feel bad I wasn't able to process this all at her doctor appointment. So I'm processing here 😬 Hopefully I will hear back soon regarding this mysterious follow up, and be armed with some questions that might help bring clarity. We did talk about trying gluten-free for a bit, since we know we will take our time deciding with the biopsy. I guess my question would be, if her chronic belly aches go away, is that the end of it? Or should we still move forward with a biopsy?

My husband got home from work and I shared this all with him. We are questioning why there wasn't a celiac panel done to follow up. The doc did say a routine blood draw would be done before the endoscopy,  so I will have to ask if that will be done then as well. Otherwise,  we think we will request a panel. That link you shared went through so many things im not seeing in her results. 

[trents]

Most physicians will not order a full celiac panel to begin with because of the expense. Many physicians will order only the tTG-IGA to begin with and maybe a total IGA along with it. If the tTG-IGA is negative despite obvious symptoms being experienced by the patient and or the total IGA is low then they may order a full celiac panel and even a biopsy.

By the way, it is quite normal not to grasp everything you are being told at the first visit after the antibody testing is complete and results are in. There is just a lot to have to bend your mind around. It comes as a total shock to many people when they are being told you can't eat anything with wheat, barley or rye any more. Instantly your start thinking of the implications that will have on your family and lifestyle, like "Is my kid going to be able to attend other kids' birthday parties?" "What will we do at family gatherings?" "Do we have to give up eating out?"

If her belly aches go away within a few weeks of going gluten free that is strong indicator your daughter either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). Many of the symptoms are the same between the two and the antidote is the same. What is different is that NCGS doesn't damage the villi lining the small bowel as does celiac disease. And that is the diagnostic value of the biopsy. If no villi damage is present then you begin to consider NCGS instead of celiac disease. But NCGS should not produce positive IGA antibodies either. But word of caution here. If you put your daughter on a gluten free trial diet you must be very diligent to make sure you aren't sabotaging the experiment by letting gluten slip by you.

[Ksolo]

Thats exactly what we are feeling with the biopsy. But even if it turned up negative, there's still the possibility of celiac. I guess our motivation is to know if its celiac, because it would be important for us to know that she could have an auto-immunity. She already has a dairy allergy, and she loves her DF options available to her. And whether things end up confirming as best they can to celiac or simply gluten sensitivity, we've discussed we would go forward with a gluten-free diet for her if it helps her feel better. Things are becoming a bit more clearer to me, thanks to this thread. I actually wasn't sure what kind of response I'd get here, but I have felt very affirmed. I think we will try a gluten-free diet for the next several weeks and see what that does. 

[Ksolo]

2 hours ago, Scott Adams said:

I would just add that if it were my daughter, no matter what the endoscopy results were, I'd start her on a gluten-free diet. The TTG blood test is very specific for celiac disease, and is over 97% accurate at diagnosing it.

The article below may be helpful:

 

Wow! This article is great! It helps knowing how much weight that ttg result actually carries. Its worth being a bit more concerned over than I initially was. I'm still curious as to why the igg wasn't tested. But oh well. I can always request other things, I guess if we felt it necessary.  

I think we will start her on a gluten-free diet for now, and see what that does for her. If/when we decide to do the biopsy, I like your recommendation on the "2 slices of bread". Ill mention it to her doctor and see if they think its a good start. I am coming away from the link that I don't need to rush my answers. And so, I also don't need to rush the biopsy; especially if we trial a gluten-free diet first. 

[trents]

I am glad you have had a positive experience on the forum to this point. One more thing I want to add and that is there is some thought out there that NCGS may be a precursor to celiac disease for some. That's where the genetic testing might be helpful. If your daughter has either or both of the genes for celiac disease there may be good chance that her antibody test values may someday become more strongly positive and persistent. It would be something to keep an eye on.

[Universal G]

16 hours ago, Ksolo said:

Hi! I'm new here. Just two weeks ago, we had my 10-year-old daughter tested for a gluten allergy. The result came back with a "weak positive" celiac, which caught us by surprise. 

This was the heading: CELIAC DX, WK TTG - Details

Gliadin IgA AntibodyYour Value5 U/mLStandard Range<15 U/mL

Gliadin Ab IgA InterpretationYour ValueNegativeStandard RangeNegative

...

Celiac ALGORITHM 

IgAYour Value124 mg/dLStandard Range35 - 250 mg/dL

...

**This is why I'm confused**

*Celiac Diagnosis, Norm or Elev IgA - Details

*TTGAYour Value28 U/mLStandard Range<15 U/mLFlagH

*TTGA InterpYour ValuePositiveStandard RangeNegativeFlagA

And then I got this messgae:

**Comments from the Doctor's Office:

"L's (my daughter) initial celiac testing was abnormal, but the followup was normal. This is not urgently worrisome, but we will need to wait until GI appointment for further interpretation. Please call our office in the meantime if there are further concerns."

 

I was hoping for answers to gluten, not this 😭 My doctor said she wanted to refer us to a specialist, and the specialist thinks we need to do a biopsy (endoscopy), with those numbers. I have also been reading that biopsy is not the gold standard for a diagnosis, and we are just hesitant to do it, especially with such low numbers. But I can't find anything on this. Of course, when it comes down to it we would have the biopsy done. Just want to be sure those numbers are truly inconclusive enough. 

Was she on the Gluten Challenge / Eating Gluten Daily for at least two weeks before doing the blood test? This is important. 

[Ksolo]

She was not. Our doctor instructed us to continue her current diet without changes until a biopsy. So this was a reading of diet very rich in gluten! No dairy though. Not sure if that matters...

[trents]

1 hour ago, Ksolo said:

She was not. Our doctor instructed us to continue her current diet without changes until a biopsy. So this was a reading of diet very rich in gluten! No dairy though. Not sure if that matters...

I think you misunderstood what is meant by "the gluten challenge." It is in fact adding regular amounts of gluten back into the diet weeks before the testing in order to prevent invalidating the tests. We use the term most often when we know someone has already started eating gluten free prior to testing.

[Ksolo]

We have never taken her off of gluten as of yet. 

[Ksolo]

To clarify: she WAS in fact eating gluten daily before her blood test. And because we knew we were going to have her blood tested, we kept her on her regular gluten rich diet.

[RMJ]

The follow-up test was the EMA.  Where my labs are done, it isn’t performed unless the TTG-IgA is positive. Sometimes this is called reflex testing.   The lab would use the same blood sample, a new blood draw wouldn’t be needed.

Was there a value for the EMA?  It would be in the format 1:5, or 1;10, or 1:20, or 1:40 etc.

[Ksolo]

No value stated. Just this: 

Endomysial Antibody IgAYour Value NegativeStandard RangeNegative

 

This is so helpful to know! Thanks!

[trents]

https://www.cureceliacdisease.org/faq/what-is-an-ema-blood-test/

The EMA is very specific for celiac disease but it can miss those who do have celiac disease because it is not very sensitive. I think I read somewhere that it is also very expensive so not ordered real often.