Celiac testing results

[Tony G]

I was diagnosed w Celiac back in 2016, I am 47 yrs and have been doing the 6 month follow up visits and lab work to check how things were going.  In an earlier blood work around Apr 2018 my celiac blood test TT IGA value was still mildly elevated around 22 and the reference range for this test is 0-19 .  I was frustrated bc I was really trying to be strict w gluten-free diet and I only have labeled gluten-free foods, almost always stick to certified gluten-free even and never just go by ingredients , in any case I stil tried very hard to be strict and conscious and then at next 6 month visit in Oct 2018 the value was 14 which was much better but again in my mind and recollection was eating/diet the same and still very conscious - I just did an April 2019 test and again went back to 21 mildy elevated.  For foods I am very careful and if I eat out the majority of time its a place like Red Heat Tavern which has a good reputation and reviews regarding celiac safe and always careful ordering at any other restaurants - only on occasion of course its almost impossible to know if some CC gets introduced if at a grad party or not an ideal place.  For alcohol I only drink red wine, titos or the hard seltzers which all are mentioned gluten-free ok.  I never have cheated even once , again I only use foods/condiments labeled certified gluten-free.  I guess my questions are anyone else experience same, can this test be impacted by maybe a slip up closer to the blood draw date?  what else should I be doing? concerns ? please help

[cyclinglady]

The best way to know if your celiac disease is actually active, is a repeat endoscopy to obtain biopsies.  

A similar issue happened to me.  Somehow I got glutened two years ago.  My antibodies for DGP IgA were  off the charts (never had a positive TTG ever....).   They were not coming down.  I was going crazy trying to determine the source of gluten in my diet which is weird, because my hubby has been gluten-free for almost 20 years and I feel like I really know how to identify gluten.   My GI kept suggesting an endoscopy, but I resisted.   Instead, I trialed the Fasano diet for a few months (non-processed gluten-free foods/no eating out at all).   I was still having symptoms almost a year later and my DGP IgA was still elevated.  Finally, I agreed to the endoscopy which revealed healthy, healed villi.  I was doing a good job!  ???However, gastric biopsies revealed autoimmune Gastritis commonly affiliated with Hashimoto’s.?  That was the cause of my lingering symptoms.  I had healed from that initial gluten exposure almost a year earlier.  Symptoms for my glutening s were pretty common (like becoming lactose intolerant again and trying to digest ANYTHING hurt while it passed through my small intestine that lasts for over a month or two.   My gastric symptoms were GERD and a case of autoimmune hives.  

What I learned is that not all symptoms are due to active celiac disease.  I also learned through research that the antibodies tests for celiac disease were designed to help diagnose and NOT monitor diet.  But the blood tests are the only “tools in the toolbox” that doctors can use without ordering a bunch of costly endoscopies.  

If you are feeling good, chances are your celiac disease is not active.  I know that some folks are asymptomatic, but it sounds like you are not.  If this is really driving you crazy, you might want to talk to your GI about a repeat endoscopy.  Sometimes piece of mind is priceless.  Weight the risks and benefits.  

[cyclinglady]

Hey, I rarely drink because of my Gastritis, but are those hard seltzer’s really gluten free and not gluten removed?  Gluten removed can be a problem.....

Also, I am very careful about eating food not prepared by me.  I only eat at Dedicated gluten-free restaurants and bring my own food to parties, etc.  I guess six months of being covered in hellish all-over-my-body hives and a third autoimmune disorder has stopped me from taking risks.  

Make sure the restaurants you frequent have been reviewed by celiacs.  

[kareng]

The hard seltzer’s are really gluten-free.  They are made from sugar cane and flavors .  No gluten .  Drinking a Truly right now

[cyclinglady]

2 hours ago, kareng said:

The hard seltzer’s are really gluten-free.  They are made from sugar cane and flavors .  No gluten .  Drinking a Truly right now

I will have to try them.  Thanks!  

[Tony G]

12 hours ago, cyclinglady said:

The best way to know if your celiac disease is actually active, is a repeat endoscopy to obtain biopsies.  

A similar issue happened to me.  Somehow I got glutened two years ago.  My antibodies for DGP IgA were  off the charts (never had a positive TTG ever....).   They were not coming down.  I was going crazy trying to determine the source of gluten in my diet which is weird, because my hubby has been gluten-free for almost 20 years and I feel like I really know how to identify gluten.   My GI kept suggesting an endoscopy, but I resisted.   Instead, I trialed the Fasano diet for a few months (non-processed gluten-free foods/no eating out at all).   I was still having symptoms almost a year later and my DGP IgA was still elevated.  Finally, I agreed to the endoscopy which revealed healthy, healed villi.  I was doing a good job!  ???However, gastric biopsies revealed autoimmune Gastritis commonly affiliated with Hashimoto’s.?  That was the cause of my lingering symptoms.  I had healed from that initial gluten exposure almost a year earlier.  Symptoms for my glutening s were pretty common (like becoming lactose intolerant again and trying to digest ANYTHING hurt while it passed through my small intestine that lasts for over a month or two.   My gastric symptoms were GERD and a case of autoimmune hives.  

What I learned is that not all symptoms are due to active celiac disease.  I also learned through research that the antibodies tests for celiac disease were designed to help diagnose and NOT monitor diet.  But the blood tests are the only “tools in the toolbox” that doctors can use without ordering a bunch of costly endoscopies.  

If you are feeling good, chances are your celiac disease is not active.  I know that some folks are asymptomatic, but it sounds like you are not.  If this is really driving you crazy, you might want to talk to your GI about a repeat endoscopy.  Sometimes piece of mind is priceless.  Weight the risks and benefits.  

thank you for the helpful input, really appreciate it - I will talk to my GI doctor, yes in general I feel good .  I never really know if I have been "glutened" other than occasional going to bathroom/diarrhea but sometimes I am not sure if that now a intolerance to cheese/dairy moreso than getting gluten....I never throw up or get pains, headaches other symptons.  The reason I got diagnosed 3 yrs ago is because I was getting cankar/mouth sores frequently , on my tongue and around my mouth and for about a year afterwards still got them occasional but much fewer and since last year or so I never get the sores in my mouth anymore which I like to think went away when started gluten-free diet ? 

[cyclinglady]

It certainly sounds like you have healed and are diet compliant.   No more canker sores!  Celiacs often have intolerances that may or may not resolve even when healed.    The most common one is lactose.  That is because the enzymes to digest lactose get damaged/blunted and can not release the enzymes.  I was able to regain dairy, but genetically I must not be predisposed to being lactose intolerant.  So, if dairy still bothers you it just might be genetics.  Try yogurts and hard cheeses which contain less lactose, but those might not ever work for you (my ancestors must have been herders).  

I just want to comment about eating out.  I try to get newly diagnosed members to avoid eating out except at dedicated gluten-free restaurants at least until they are feeling good.  In general, best to take more risks once you are well.  No one likes setbacks!  But it looks like you have this all down!  

Go ahead and google follow-up testing and share with your doctor.  I think you can stop beating yourself up!

[Beverage]

It's harder than many thing to keep gluten out of your digestive system.  It's not only what you put in your mouth to eat, it's also what you breathe or touch and then possibly touch your mouth.  Anything you put on your body...shampoos, conditioner, cleansers, body lotion, they can contain obvious gluten ingredients like wheat germ oil, but the tocopherols (vitamin E) can be derived from wheat.  Make sure any of your body and face things are gluten free.  Also anybody you are kissing .... if they eat gluten or use gluten body products, you could end up with those in your mouth. 

Anything in the air, flour from someone else cooking with gluten flour, or at the grocery store when they stack the flour. I don't even go down the flour aisle, I stand at the end and ask someone to get what I am looking for.  Another hidden gluten source is many glued items, which may be from wheat. 

Also building products that are glued and then cut so that it gets released and airborne.  I have a 1940's house and thank God we did our major remodeling before I knew I had Celiac's, but our latest project with the 2nd bathroom required me to be outside when the old plaster was cut through and my boyfriend had to do extreme cleaning up after (hee hee I didn't mind that!).   

If you are sharing the kitchen with gluten eaters, well, it's nearly impossible to keep gluten out of your world (how do you wipe the counter with your gluten free sponge and then it's not gluten free anymore...throw it out every time??? Wipe all cabinet knobs every time?  I couldn't handle the mental stress and hyper vigilance, I had to request gluten free main floor of the house except for his beer or whiskey every once in awhile). 

I hope this helps and you possibly find some other source that you had not thought of.