Daughter retesting 5 months out from diagnosis

[Carolina]

Hi all. My daughter was diagnosed with Irritable Bowel Disease, currently listed as Indeterminate but leaning towards Crohn's as well as Celiac Disease in October. We will be repeating the Celiac panel in a few weeks and I am wondering how to set my expectations. Her Ped GI did not want to run the Celiac Panel any earlier as she said it would cause unnecessary worry. Should I expect lab values to be lowered, lowered significantly, normalized completely? I spend so much of my time understanding the Crohn's piece especially given she is a unique case. Can someone please just tell me what I need to know. I long for the day I don't have to research a million things.

[kareng]

53 minutes ago, Carolina said:

Hi all. My daughter was diagnosed with Irritable Bowel Disease, currently listed as Indeterminate but leaning towards Crohn's as well as Celiac Disease in October. We will be repeating the Celiac panel in a few weeks and I am wondering how to set my expectations. Her Ped GI did not want to run the Celiac Panel any earlier as she said it would cause unnecessary worry. Should I expect lab values to be lowered, lowered significantly, normalized completely? I spend so much of my time understanding the Crohn's piece especially given she is a unique case. Can someone please just tell me what I need to know. I long for the day I don't have to research a million things.

Did she have a positive Celiac panel before?  Is she eating gluten-free ?

If they  she has Chrohns, why aren't they doing something about it?

[Carolina]

Yes, she tested positive and yes she has now been eating gluten-free for 5 months since diagnosis. She is being treated for the Crohn's, absolutely. This is just the first time we are re-doing the Celiac blood test since diagnosis.

[Carolina]

Yes, she tested positive and yes she has now been eating gluten-free for 5 months since diagnosis. She is being treated for the Crohn's, absolutely. This is just the first time we are re-doing the Celiac blood test since diagnosis.

 

[cyclinglady]

I am sorry that you daughter has the possibility of both Crohn’s and Celiac Disease.  My niece has Crohn’s.  It took a long time to get her diagnosis, but she is managing well.  She will continue to get screened for celiac disease, but does not have it now.  

Follow up testing for celiac disease:

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Some people heal fast.  Some people heal slow.  Add in the complexity of mastering the gluten free diet, and recovery can take a year or longer.  Some doctors think that villi regrowth can occur within weeks.  This is true, but you have to factor in all the environmental issues that can delay healing ( e.g. cross contamination or anemia).  Most members take months or years to recover. 

Her antibodies should be going down.  But know that the tests were designed for diagnosing and not diet adherence.  But it is the only tool in the toolbox for now.  Helpful but not perfect.  My antibodies were always elevated ( off the charts).  I usually went in after a glutening.  I wish I went back when I was feeling well to see if my antibodies were normalizing.  I had a endoscopy done last month.  All healed.  It seems like mt antibodies maybe elevated due to other autoimmune issues or the tests are not that accurate in determining dietary compliance or gut damage.  

 

[Carolina]

Hi all, I should wait until I get all the results back but I am impatient.

My daughter has IBD and Celiac diagnosed in October. They just retested Celiac panel for first time. She said the Antigliadin Abs, IgG went from 24 to 12 (now normal). She had a weak positive with the Transglutaminase (tTG) IgG and a very high Translutaminase tTg igA before, but I do not have the new results back. The Endomysial Antibody, IgA is still showing positive...is this concerning? 

To be honest, I am over-researched in IBD and under-researched in Celiac. It is a steep learning curve for both. Can someone please spoon feed me what I need to know on this? haha

 

[Gemini]

If your daughter's tTg/IgA was very high at diagnosis, then her EMA may not be normalized after 5 months.  The EMA is an IgA based test so that number will have to come down before the EMA turns negative.  It will be interesting to see what her tTg/Iga is now but don't sweat this.  Five months is not a long time and she also has Crohn's so that's a lot of inflammation in her GI tract to calm down.  The downward trend of repeat blood work plus remission of symptoms is a good indicator that she is doing well and healing!

[Carolina]

50 minutes ago, Gemini said:

If your daughter's tTg/IgA was very high at diagnosis, then her EMA may not be normalized after 5 months.  The EMA is an IgA based test so that number will have to come down before the EMA turns negative.  It will be interesting to see what her tTg/Iga is now but don't sweat this.  Five months is not a long time and she also has Crohn's so that's a lot of inflammation in her GI tract to calm down.  The downward trend of repeat blood work plus remission of symptoms is a good indicator that she is doing well and healing!

Thank you so much, great to know! I know I had read it is highly variable how quickly things heal. The #1 is that her Crohn's is in a great place (knock on wood), her levels are completely normalized with that. I wasn't sure which of these might be an indicator of how her diet is going. I actually completely trust her away from home, more worried about cross-contamination I might be missing. 

 

Adding in that she has never had an obvious reaction to gluten. Had we not had the Crohn's diagnosis I suspect it would have gone unchecked a lot longer.

[Carolina]

I finally have all the results back, if anyone has any questions I should be asking please let me know. These are levels at diagnosis versus 5 months out on gluten-free diet.

 

Antigliadin AbS, IgA - 6 now 5 (both negative)

Antigliadin Abs, IgG - 24 now 12 (weak positive to negative)

Transglutaminase tTG IgA - greater than 100 (doesn't show beyond 100)  to 33 (both positive but improved)

Transglutaminase (tTg) IgG - 8 now 5 (weak positive to negative)

Endomysial Antibody, IgA - postive (no change)

Immunoglobulin A Serum - 178 to 251 (normal to now HIGH) not sure what this is about, could be the IBD but she is doing well with her Crohn's according to that bloodwork and stool test.

 

 

[cyclinglady]

Wow! She is doing great.  Just what you want to see — declining numbers.  I would not worry about the Immunoglobulin A (IgA) result.  It is most likely indicative of her having other autoimmune issues.   My IgA result is high as well, but I also have other autoimmune issues too besides celiac disease.  

Keep up the good work!  ?

[Carolina]

20 minutes ago, cyclinglady said:

Wow! She is doing great.  Just what you want to see — declining numbers.  I would not worry about the Immunoglobulin A (IgA) result.  It is most likely indicative of her having other autoimmune issues.   My IgA result is high as well, but I also have other autoimmune issues too besides celiac disease.  

Keep up the good work!  ?

Thank you! I was hoping you would respond.  

Yes, I see what you mean about the Immunoglobulin but it surprises me it went from normal to high. She has had some on and off joint pain that is stressing me out as it is fairly common to have arthritis with IBD. Hoping this change isn't an indication of that. Glad to hear the Celiac numbers look good otherwise, so wish I could know what that over 100 really was originally for additional perspective. 

[cyclinglady]

Yeah, my lab only goes to 200.  When I was diagnosed, I recall that my DGP IgA was around 80 (only positive on the panel).   My GI stated that my result was “mildly positive”, yet biopsies revealed a Marsh Stage IIIB with patches of moderate and severe villi damage.  In the five years since my diagnosis, my DGP IgA has been elevated several times with a result higher than 200 (off the charts).  Yet, I never became severely anemic which was my primary symptom.    This tells me (and my GI) that my intestinal damage may not have been severe or the damage did not last not long enough to cause anemia.    So, the antibodies tests do not necessarily correlate with intestinal damage.  A positive is a positive (even slight) though and is worth investigating with a biopsy per the celiac research experts. 

Even after my last endoscopy which showed normal villi (my new GI has a very good scope that you could actually see the villi and he gave me the photos), my antibodies were still elevated.  Maybe some “memory” factor.  Too bad that “memory” factor is not helping my aging brain.  Now where are my keys?  ?

[cyclinglady]

I forgot to ask the MOST important question!  How is your daughter feeling?  Having two autoimmune issues at such an early age can be overwhelming.  Consider investigating celiac camp.  Imagine a place where everyone is like you and you get to do normal kids stuff.  How cool is that?  

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Do not forget local celiac groups too.  Plenty of opportunities to connect and eat safely!  

[Carolina]

21 hours ago, cyclinglady said:

I forgot to ask the MOST important question!  How is your daughter feeling?  Having two autoimmune issues at such an early age can be overwhelming.  Consider investigating celiac camp.  Imagine a place where everyone is like you and you get to do normal kids stuff.  How cool is that?  

Open Original Shared Link

Do not forget local celiac groups too.  Plenty of opportunities to connect and eat safely!  

Yes, I heard about that camp and there is another for IBD kids. Somehow despite having Crohn's and Celiac she doesn't seem to associate herself much with the diseases for better or worse. She embraced the gluten-free diet very well and her Crohn's meds. Her only grievance has been the nutrition shakes she has to drink for colon inflammation and weight gain, she is so over them doing the same one 2x a day. She's gained 9 much needed pounds in the last 5 months though. Sort of hoping she can drop to 1 a day at her appointment next week. 

Had she not had the Crohn's flare-up I suspect it would have been a long time before we ever discovered the Celiac. She does not have any obvious reaction at all. I guess that is a good thing. The only time she has been in distress is during a Crohn's flare-up.