Type 1 daughter with positive blood test

[Jules22]

New here- would love some help. My daughter has type 1 diabetes. For the last 1-2 years she has been very irritable- major mood swings that can be activated over the smallest things. She has tested vitamin d deficient in the past- on a supplement now-has been recently complaining of pain in her legs nightly and having a hard time sleeping. Her hair which used to be very thick is now much thinner. She also has a very bloated belly with some diarrhea from time to time. 

 

Her blood work was transglutaminase ttg iga >100 and immunoglobulin a 78 (range is 80 up)  

she just tested positive for mono in the beginning of May  She also has an older sister with Hashimoto's 

 

could this be anything other than celiac?

thanks!

 

 

 

 

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[Gemini]

Hello Jules,

Her tTg/Iga is very, very high and that will not occur from just the diabetes alone.  Since Type 1 and Celiac share the same genetics and can occur together, it would be great if she could have the complete Celiac panel run and not a partial. I do not understand the test for Immunoglobulin so cannot comment on that but her tTg is concerning for Celiac. With her symptoms, she should be fully screened for it, along with your other daughter who has Hashi's.  I also have Hashi's and that's another one that likes to pair with Celiac Disease.

Tests in the full panel include:

tTg/IgA and tTg/IgG- Since your daughter's tTg was sky high, the IgG version of testing usually done may not be needed.

DGP/IgA- This tests for reaction to gluten in her diet. This is usually repeated with the tTg annually for dietary compliance, if she is diagnosed with Celiac.

EMA- This test is usually not done unless the tTg is positive because it has to be done by a technician and not a machine and it is expensive. However, it is VERY important in a panel because if it is positive, then coupled with a positive tTg, pretty much is diagnostic for Celiac.  The GI will want to do a biopsy, which is usually indicated for kids or young adults. NO OTHER DISEASE WILL CAUSE A POSITIVE EMA BUT CELIAC DISEASE.

Total IgA:  This is done to make sure a patient produces enough IgA antibody for testing purposes to be relevant but it will not be needed for your daughter.  Her tTg number proves she makes enough antibody.

Good luck with testing and make sure she keeps eating gluten until all testing is completed!

[cyclinglady]

Hi Jules! 

I think Gemini missed this, but your daughter did have her IgA tested.   It is slightly below range, but in the case of celiac testing, confirms that the TTG is positive.   Keep her in a gluten diet until all testing is complete (all celiac tests, blood or biopsy, require a patient to be on a gluten free diet).

In the meantime, study the gluten-free diet.    There is a steep learning curve, but it is manageable and improved health makes it completely worth it.  

Consider getting your other daughter tested too even if she is symptom free.  

I wish you all well!  

[tessa25]

15 minutes ago, cyclinglady said:

Keep her in a gluten diet until all testing is complete (all celiac tests, blood or biopsy, require a patient to be on a gluten free diet).

I think she meant "require a patient to be on a gluten diet".

[Jules22]

Thanks for the responses- I was hoping that there could be another possibility. Talked to her endo who is referring us to a gastro so that she can do a biopsy. Trying to come to terms with this. I knew something wasn't right with her but was hoping for it to be a thyroid condition like her sister since we already deal with that. If celiac is in her future - I'm sure we will figure it out like we did with type 1- and looking forward to having her feel better. 

[Victoria1234]

7 hours ago, Jules22 said:

Thanks for the responses- I was hoping that there could be another possibility. Talked to her endo who is referring us to a gastro so that she can do a biopsy. Trying to come to terms with this. I knew something wasn't right with her but was hoping for it to be a thyroid condition like her sister since we already deal with that. If celiac is in her future - I'm sure we will figure it out like we did with type 1- and looking forward to having her feel better. 

Has the sister with thyroid issues been tested? Celiac and hypo or hashi's tend to go hand in hand. And for that matter you should be tested too. Celiac is a genetic issue.

good luck!

[Jules22]

Yes- her sister has actually been genetically tested through Prometheus labs about 5-6 years ago by a gastric when she was having lots of stomach issues. She had recently been diagnosed with the Hashimoto's and was having recurring bouts of constipation/diarrhea. 

i think that is another reason why I kind of thought that my other daughters problems were not celiac. Their father and I do not have any known autoimmune so we should probably be tested at some point.