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Story So Far

Cathie

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Cathie Newbie
Cathie
Posted

Hi all ,I posted here a couple of years back while waiting on results of a biopsy and was so convinced the results would be positive,however they were negative and I just tried to forget all about being celiac.I'm not convinced though now 2 yrs later that the correct diagnoses was made.At the time I was following the atkins diet and maybethats why the results were neg.I mentioned this to the GI that performed the biopsy and he looked at me like I was insane and said a negative is a negative!

To start at the begining,I was diagnosed (by biopsy) with celaic disease as an infant and followed a very strict gluten free diet until my middle/late teens.As you know teenagers rebel against funny things and I wanted to be like everyone else and eat the same foods.When I had no reaction to the first couple of things I ate,within a year or eighteen months I was eating (and drinking)everything.I said it to the Consultant(who was also the hospital GI consutant) I was seeing at the time for Asthma and his answer was if your not feeling sick continue on with a "normal" diet.Roll on 12 or 13 years and I started having some minor stomach problems,I had a scope done and was told I had a bacteria in my stomach and given antibiotics,I had mentioned the celiac thing to several Docs and no one made any deal about it.Since then I would have stomach problems a lot of the time,I also had my gallbladder out 5 yrs ago.

My current symptoms are:

Severe headaches

Bloating

Trapped wind

Constipation

very bad joint pain

extreme fatigue

foggy head

face burning bright red after eating

As of the middle of last year the consultant(Same one as above) I was seeing diagnosed me with fibromyalgia....but I have my doubts.Sorry for the long post but I was just wondering does any of this sound familiar to anybody

Thanks in advance,

Cathie.

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ravenwoodglass Mentor
ravenwoodglass
Posted

It used to be thought that children could outgrow celiac. We now know that is not the case. A celiac is a celiac for life. False negatives on testing are not uncommon. You could consider persueing being rediagnosed but personally I would just get back on the diet.

Cathie Newbie
Cathie
Posted
  • Author

It used to be thought that children could outgrow celiac. We now know that is not the case. A celiac is a celiac for life. False negatives on testing are not uncommon. You could consider persueing being rediagnosed but personally I would just get back on the diet.

Hi raven,thanks for your input ,to be honest I think part of me knows I should go glutenfree I just find the idea of it very daunting.I suppose its a bit like being a smoker and knowing cigarettes are bad for you but finding it hard to commit to quit! B)

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi raven,thanks for your input ,to be honest I think part of me knows I should go glutenfree I just find the idea of it very daunting.I suppose its a bit like being a smoker and knowing cigarettes are bad for you but finding it hard to commit to quit! B)

Things have changed a lot in the last couple years as far as gluten free food goes. We now have bread that is edible, Kinnickinnick and Grainless Baker are a couple good ready mades. Pizza, doughnuts, cookies and cakes and such make it an easier transition than it was even 8 years ago when I was first diagnosed. If you have a Wegmans close by they label all their gluten-free stuff and if not there are stores in areas without them that will carry stuff. The store at the homepage also carries a lot of good stuff if you can't find it locally.

It is a pain at first but you will feel so much better and avoid the nasty offshoot diseases by going back.

mushroom Proficient
mushroom
Posted

Only one comment to make: a positive IS a positive, but a negative could be a false negative. As Ravenwoodglass says, once a celiac, always a celiac :)

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