Non Symptomatic Celiac

[mfarrell]

Is there anyone else out there that has been diagnosed with Celiac (by surprise) that had no symptoms?  To me it makes it harder to identify if I have accidentally ingested gluten.  I went to a 4th of July party and almost everything prepared was gluten free. (good friends of mine!)  I just don't know if anything was cross contaminated, etc......

[kareng]

Every year, you will get your blood tested.  That should help you to know if you are doing enough for your body.

 

I don't remember how long you have been gluten-free, but it might be best to eat only simple safe foods you have prepared for a few months to let your gut heal.  After it is healed, you may find you do get symptoms from an accidental glutening.

[mfarrell]

I was diagnosed April 30th.  However, about three weeks prior I was told that I either had celiac or a sensativity to gluten according to my biopsy.  The blood test confirmed Celiac.  I started the gluten free the 8th of April right after he told me what the biopsy revealed.

 

I have been eating pretty safe but the true test will be on my trip to Boston next week. I have found several restaurants that guarantee gluten free items on their menu and also a whole foods store is next to our hotel.  It's going to be tough but I am sure I can work through it. Thanks and anymore advice I will greatly appreciate.

[RMJ]

I am nonsymptomatic and having a very hard time getting my DGP IgA antibody levels down to normal. I thought avoiding gluten-containing ingredients would be enough but apparently it isn't - contamination seems to be a problem for me.

[mfarrell]

I am nonsymptomatic and having a very hard time getting my DGP IgA antibody levels down to normal. I thought avoiding gluten-containing ingredients would be enough but apparently it isn't - contamination seems to be a problem for me.

How long have you been gluten free?  I have read it can take anywhere from 6 weeks to 18 months or longer before some get results..... I am trying to be optomistic.

[DougE]

I am nonsymptomatic.  I do get my blood tested every other year, but I am not sure how reliable that would be.  I think that since I am trying my darndest not to consume gluten, even if I was not doing it right, I would probably get a false negative on a blood test. 

 

I am extra careful to avoid cross contamination, and rely heavily on other Celiac's experiences.  These forums are a god-send for that purpose.  One question I have never been able to resolve is if I should be avoiding all oats.  I do have gluten-free oats once in a while, but some are sensitive to even gluten-free oats.  Without symptoms, would I know?

[mfarrell]

I am nonsymptomatic.  I do get my blood tested every other year, but I am not sure how reliable that would be.  I think that since I am trying my darndest not to consume gluten, even if I was not doing it right, I would probably get a false negative on a blood test. 

 

I am extra careful to avoid cross contamination, and rely heavily on other Celiac's experiences.  These forums are a god-send for that purpose.  One question I have never been able to resolve is if I should be avoiding all oats.  I do have gluten-free oats once in a while, but some are sensitive to even gluten-free oats.  Without symptoms, would I know?

Good question... someone had told be to avoid all grains at first but my nutritionist said that was not necessary.  I am still in the learning phase so I am curious as to what the answer to your question will be.

[RMJ]

I have been trying to be gluten free for 2-1/2 years. When diagnosed I was high positive on 5 blood tests (TTG IgA and IgG, EMA IgA, & DGP IgA and IgG. After the first year, all but DGP IgA were normal, and that one is down by 65%. I'm actually going to my doctor (GI) today to discuss this. For the last 4 months I've been eating very plain foods (fruits, veggies, rice, plain chicken) with occasional gluten free cereal (corn chex) and rice cakes. Although I didn't have symptoms, I started feeling really good after starting this diet.

[TGK112]

I was also asymptomatic when diagnosed and have always been nervous that I will never know when/if I've been glutened. Six months after diagnosis I had a repeat blood test and endoscopy. The endoscopy showed complete healing and the blood work was very near normal. After this, I have had blood tests on a yearly basis - showing that I am in the normal range. So I figure that my level of precaution seems to be working. I look forward to these yearly blood tests -- as positive reinforcement!

 

I do though wonder about "false negatives" If people have to go through a gluten challenge to show accurate results -- I wonder if my results are skewed in any way without my knowing it.

 

My gastroenterologist has suggested possibly having a follow up endoscopy around every five years as well.

[mfarrell]

I was also asymptomatic when diagnosed and have always been nervous that I will never know when/if I've been glutened. Six months after diagnosis I had a repeat blood test and endoscopy. The endoscopy showed complete healing and the blood work was very near normal. After this, I have had blood tests on a yearly basis - showing that I am in the normal range. So I figure that my level of precaution seems to be working. I look forward to these yearly blood tests -- as positive reinforcement!

 

I do though wonder about "false negatives" If people have to go through a gluten challenge to show accurate results -- I wonder if my results are skewed in any way without my knowing it.

 

My gastroenterologist has suggested possibly having a follow up endoscopy around every five years as well.

This is good to know! There is hope for healing.  I have read and also been told that sometimes you don't heal or it takes a long time to heal. Thanks for sharing.

[RMJ]

I don't have symptoms but follow my progress with blood tests. Two years trying to be gluten free (no gluten-containing ingredients) and the DGP IgA was much lower than the original number (45 vs 143), but still stubbornly high. Four months ago I started a gluten contamination elimination diet. It worked! The DGP IgA this week is 26, still a bit above normal (0-19) but down significantly from 5 months ago and I feel great.