Trying To Understand Sensitivity.

[desertkat]

Hi,

I'm new to the Forum. I can't believe it took me so long to sign on as I was diagnosed almost 2 years ago with a positive biopsy. My symptoms over the years have been severe to moderate to none at all. I strive for a gluten free diet - but if I ingest gluten by accident and am aware of it I don't seem to react. I read how most of you become severely ill within hours and it isn't the same for me at all. This makes me very concerned that I might not be as gluten free as I think - and if that is the case is there damage going on inside my body that I am unaware of? Are there others who don't react as severely?

[nikki-uk]

My husband nor my son are 'big' reactors - very mild vague symptoms might be apparent after a glutening (night sweats - lighter coloured stools - moodiness)

You know - in some ways it is harder 'cos you don't know if you've been glutened ...but all you can do is be ever vigilant - read labels, check with companies....try your hardest........you can't do much more than that can you??

[Puddy]

Hi,

I'm new to the Forum. I can't believe it took me so long to sign on as I was diagnosed almost 2 years ago with a positive biopsy. My symptoms over the years have been severe to moderate to none at all. I strive for a gluten free diet - but if I ingest gluten by accident and am aware of it I don't seem to react. I read how most of you become severely ill within hours and it isn't the same for me at all. This makes me very concerned that I might not be as gluten free as I think - and if that is the case is there damage going on inside my body that I am unaware of? Are there others who don't react as severely?

Hi.....I believe I'm in the same boat as you...LOL...although I was only diagnosed 5 months ago. I, too, have had all levels of symptoms over the years although at the time I had them I didn't know I had celiac disease. When I was diagnosed I was having no gastro symptoms. I've read that the learning curve is very steep and expect to make mistakes the first few months. Either I'm better at this than I thought I could be and haven't made any mistakes or I'm just not reacting to any CC. I, also, thought I might be ingesting gluten frequently and that's why I had no symptoms with accidentally glutenings and I might be doing damage unknowingly. But I've had 2 blood tests since first being diagnosed and my numbers have gone down dramatically to the point where they should be to be considered 'healthy' so I guess I'm doing OK. Hope that's the case for both of us.

[desertkat]

So, it sounds as though I'm not the only one who doesn't react much. My blood test came back negative, so I suppose another blood test wouldn't give me much information on what is going on inside. I did have a follow up colon check and they did say things appeared to be improving. I have been after my daughter to have a blood test since I read she has a 25% of being a Celiac. But then she may come back negative as well and I don't think I talk her into a biopsy at this stage of her life. Although I was unaware of the celiac when I was younger I can now look back over my life and pinpoint times when I was reacting - she has yet to have those types of symptoms, ever. Thank you all for responding so quickly, it's nice to talk to someone about this who understands.

[kbtoyssni]

I don't react much, either. My symptoms seem to decrease each year. Sometimes I'll go out to eat, my stomach feels not quite 100%, but it's hard to tell if it's gluten or just greasy food or what. I do find that cumulative gluten affects me. I was accidentally eating rice that had been manufactured on the same lines as wheat. My joints started hurting again and as soon as I cut out the rice, I felt fine. Anytime I start to feel not right, I have to do the double-check of everything I eat. This does not mean I am any less careful than I would be if I did react more. I am still very, very careful about everything including makeup and pet food and I do not eat anything that may have come into contact with gluten. I probably eat out a bit more than I should, but that's my most risky behavior!

[Sharon Marie]

I also don't react. Except I do think gluten makes my arms and legs ache unbearably. It is very dangerous to not react as it gives us hope that it was all a mistake and we might not have celiac at all! My brain goes that way very often. Then I have to remind myself that I would not have been severely anemic and had totally flattened villi if I were not celiac. My tests were 100% positive. I know that by glutening myself I can do serious damage to my entire body.

Just keep the faith and stick with the diet. Not as easy as it sounds!

SharonMarie