Celiac without typical tummy issues?

[ashleyld]

So we have been living mostly gluten-free for the girls (2 girls with celiac in the house) the they are doing great. Now i know i am the carrier for the gene. I know that celiac can come on at any time and when i was tested 2 years ago i was negative. But now i am having health issues (I am not completely gluten-free just the girls) swelling in joints, tired all the time, anxiety, weight gain, headaches. No tummy issues.. all tests have come back negative (lupus, ra, ect.) They did not retest for celiac, but i did test positive for a marker for an Auto Immune disease.
Heres my question... Did you get a diagnosis for celiac disease without the common tummy issues?

thanks!

[cyclinglady]

You bet!  My main symptom at the time of my diagnosis was anemia.  No tummy issues at all.  I knew that I had issues with dairy, eggs, almonds, garlic and onions for most of my life, but if I avoided those, I was fine and had no tummy issues at all! 

I went in for a routine colonoscopy (yep, the over 50 club).  During my consult with my new GI, he noted that I was anemic forever.  Nothing new.  I also have a genetic anemia.  But he asked if I had tummy issues.  Nope!  But I suspect he wrote it down anyway for insurance approval.  Anyway, he ran the FULL panel and I had one positive on the DGP IgA.  Got scoped from both ends.  Biopsies revealed moderate to villi damage.  I was shocked!  Turns out your body can do a good job of adapting for a long time!  

Funny thing is that now when I do get glutened, it impacts my gut now!  So, symptoms can evolve and change.  

Did they completely check your thyroid -- run a TPO antibodies test?  Your antibodies could be high for autoimmune thyroiditis, but your other levels (like TSH)  be normal.

Also, did you have the complete celiac disease panel?  I test negative to the tTg tests for some weird reason (even on follow-up testing).  So, if they just did a simple screening, you should ask for a full panel.  

 

[ashleyld]

25 minutes ago, cyclinglady said:

You bet!  My main symptom at the time of my diagnosis was anemia.  No tummy issues at all.  I knew that I had issues with dairy, eggs, almonds, garlic and onions for most of my life, but if I avoided those, I was fine and had no tummy issues at all! 

I went in for a routine colonoscopy (yep, the over 50 club).  During my consult with my new GI, he noted that I was anemic forever.  Nothing new.  I also have a genetic anemia.  But he asked if I had tummy issues.  Nope!  But I suspect he wrote it down anyway for insurance approval.  Anyway, he ran the FULL panel and I had one positive on the DGP IgA.  Got scoped from both ends.  Biopsies revealed moderate to villi damage.  I was shocked!  Turns out your body can do a good job of adapting for a long time!  

Funny thing is that now when I do get glutened, it impacts my gut now!  So, symptoms can evolve and change.  

Did they completely check your thyroid -- run a TPO antibodies test?  Your antibodies could be high for autoimmune thyroiditis, but your other levels (like TSH)  be normal.

Also, did you have the complete celiac disease panel?  I test negative to the tTg tests for some weird reason (even on follow-up testing).  So, if they just did a simple screening, you should ask for a full panel.  

 

I had a full panel done. Complete. Everything was normal. :/ I emailed my Dr to have a celiac test done and his uninformed nurse emailed me back. I might just email my girls Ped GI to order the tests for me.

[squirmingitch]

Furthermore, all first degree relatives of celiacs should be tested for celiac every 2 years even in the absence of symptoms. If symptoms present then testing should be done immediately. 

Good idea about asking the ped GI to run the full panel for you! 

You might need to beef up your gluten intake before you get the panel done because it sounds like you're "gluten light" so start eating gluten everyday for at least several weeks.

BTW, more than 50% of diagnosed celiacs presented with NO GI symptoms.

[ashleyld]

Interesting! And yes i am gluten light. I only eat gluten when we go out for I dont even keep bread in the house (Just waffles for the other kids and frozen PB&J and yes separate toaster)

It just irked me that the nurse was so UN-informed.

[cyclinglady]

Squirmingitch is right.  You need to consume gluten daily for 8 to 12 weeks prior to getting re-tested.  

Our house is gluten free (hubby and I).  I do buy pre-packaged gluten-containing foods for my kid's lunch.  She does not eat gluten in the house or car.  She's just been tested once since my diagnosis.  Before she's retested, I would need to increase her gluten intake.  

Our GP did recently check her for anemia as she was complaining of being tired, but she does sports, band and has a rigorous academic load, so we determine she has Freshmanitis!