Asymptomatic Celiac So How Do I Know If I Get Glutened?

[kledford]

I was diagnosed May 2011 because of low iron and low proteins, I have not really noticed the other symptoms that i have read about (thankfully). My question is if I don't have the symptoms how do I know if I have ingested gluten by mistake? I am careful, try not to eat out a lot, don't share condiments or toaster but I am nervous....I am 45 and my dr says my celiac is "quite advanced" so I am fearful of any setback. also wonder if I do ingest gluten how much of a setback is it? I know the literature says 2-3 years for adult recovery but what if you accidently ingest gluten?

[Skylark]

Welcome to the board.

First, don't be afraid. You have survived 45 years eating quite a lot of wheat. You're going to make occasional mistakes -- we all do -- and you will be fine.

Be careful with your diet and take the best common-sense precautions that you can. A lot of us get more sensitive after going gluten-free for a while so it's possible you'll start to notice a reaction to gluten. If you have a separate toaster, separate condiments, and are eating out only sparingly, it sounds like you're being plenty careful. Your doctor can also repeat the tests in six months or a year and tell whether you are improving.

You will get the most setback from eating gluten repeatedly. In studies that looked at people's biopsies after gluten challenge, it took a couple months of eating small amounts of gluten every day to get damage. Celiacs in studies who admit that they cheat and eat gluten foods deliberately also tend to have some damage on biopsy. Making a mistake very occasionally and eating a little wheat will activate the autoimmunity (and make many of us feel absolutely rotten), but it doesn't seem to cause damage on biopsy.

[love2travel]

Welcome here! I am with you on this issue. There are a few things I attribute to celiac such as three miscarriages and I used to have ridges in my fingernails until recently but I do not feel sick at all from gluten. In fact, I really enjoyed pigging out on gluten for three months prior to my biopsies. I have been gluten-free for four months and it has become easier to live with it BUT I have no clue whether I have been glutened or not. It would not be possible to be more careful than I am but I get paranoid that I may have been glutened by cross contamination. For example, my husband and I went to Italy and Croatia in May for three weeks. I took along restaurant cards and was SO careful but to this day have no idea whether I got glutened or not.

Two to three years for adult healing seems to be the standard but we all heal at different rates. That is the timeframe I am going by. FYI I recently discovered that we are not to have even certified gluten-free oats for two years after diagnosis. Darn it - I was eating them quite regularly. You do not get glutened from them necessarily but they are hard on our gut while healing.

Sometimes I admit I get envious of those who can tell without question they have been glutened. Not that I would want to get sick (that would be horrid) but at least I would know what to avoid. Plus I love food so much and know if I had that pizza or whatever I would not be sick (unless that has now changed but I don't know!). My dietitian told me that it is twice as difficult for silent celiac folks to be dilligent and I believe it. Motivation can be a factor (at least with me). Believe me - I would never, ever cheat (because I picture my poor little flat villi) but it would be so easy!!

If we accidentally ingest a touch of gluten it would be a setback but not like going back to Day 1. But it scares me to think that I could be unknowingly ingesting it daily! Be cautious with toothpastes, mouth wash and vitamins. I had to switch all those things. I am afraid the only answer is to be as cautious and strict as possible. I am going to get bloodwork done regularly so at least I can tell whether I am on the right track. Sorry not to be of more help!

I really wish you all the best with this. You and I need to hang out together!

[kledford]

lovetotravel

you sound a lot like me, I too have experienced many miscarraiges (7) and had no idea what my problem was....so grateful for the 2 kids I do have...please tell me more about the test to see how you are progressing with your diet. I was under the impression that repeat August. I agree i don't want to "be sick" but at least it would be an indicator! I am so envious of the gluten and quick graba bite anywhere options but I remain diligent and don't want my disease to progress. My uncle had lymphoma and my mom has multiple myeloma so I don't want my celiac to be a bridge to a much worse disease so I am terrified of doing my body harm unknowingly. I know my dr sees this all the time and he is very nonchalant about this but I am relly nervous and scared.