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Non Symptomatic Celiac

mfarrell

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mfarrell Rookie
mfarrell
Posted

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......

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kareng Grand Master
kareng
Posted

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 Rookie
mfarrell
Posted
  • Author

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 Mentor
RMJ
Posted

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 Rookie
mfarrell
Posted
  • Author

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 Rookie
DougE
Posted

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 Rookie
mfarrell
Posted
  • Author

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.

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RMJ Mentor
RMJ
Posted

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 Contributor
TGK112
Posted

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 Rookie
mfarrell
Posted
  • Author

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 Mentor
RMJ
Posted

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.

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