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Trying To Understand Sensitivity.

desertkat

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desertkat Newbie
desertkat
Posted

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?

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nikki-uk Enthusiast
nikki-uk
Posted

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 :rolleyes: ...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 Explorer
Puddy
Posted
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 Newbie
desertkat
Posted
  • Author

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 Contributor
kbtoyssni
Posted

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 Apprentice
Sharon Marie
Posted

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

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