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Yay, Inconclusive Test Results..

Mum in Norway

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Mum in Norway Contributor
Mum in Norway
Posted

*sigh*

 

So my bloodwork showed everything normal exept slightly positiv DGP IgG.

My biopsi was kind of negativ. I do have some inflamation in my small intestine, 'similar to that of celiac', but not enough for it to actually be celiac, it seems.

I have just about the whole list of symptoms for celiac, including perifiral neuropathy, and when I eat gluten I will throw up within 15 min. That was offcours making the gluten challange quite trying, but I feel confident some gluten made it all the way down to my intestine every day.

 

Obviously I can not have gluten, for whatever reason, and the european 'glutenfree' foods hold alot of wheatstartch, of about 20 ppm of gluten, this is enough to give me some symptoms. So I only eat naturally glutenfree foods and tht works well for me, but I just can not understand how docs can say I don't have celiac, when none of my tests are negativ and with the symptoms and high sensitivity that I have?

Also, at the same time, I'm thinking that as I am more sensitive than most, my tests should be 'more' positive if all this was caused by celiac? I have had some of the symptoms ever since childhood, so this is not a new thing ,but I have eaten very little gluten the last few years.

 

Is it posible that I have had non celiac gluten intolerance for many years, that is just recently starting to develope into celiac? Or are the two not conected?

 

Some of the reactions I have seem sort of like allergic reactions, like itches, puffy face and stuffy nose, so I am now beeing sendt to a allegy specialist to see if I might be allergic to wheat, but I don't feel like that fits all thet well.

 

Does anyone have any thoughts or information aboute cases like this?

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Mellon7373 Newbie
Mellon7373
Posted

Hey, i'm afraid I don't have enough knowledge of this to answer your questions. I would like to ask you a question about your biopsy though. I've been told that they put a tube down your throat and thats what really scares me, is it as bad as it sounds? I think I have a gluten intolerance but am really scared of blood tests and needles, etc. Would you say its worth the blood test and biopsy to find out for sure? Ive been told it only shows up if you actually have celiac so i'm already cutting out gluten and wheat to see if i can self diagnose. I dont want to go through all the hassle of blood tests, etc for the doctors to say that they dont really know.

kareng Grand Master
kareng
Posted

*sigh*

 

So my bloodwork showed everything normal exept slightly positiv DGP IgG.

My biopsi was kind of negativ. I do have some inflamation in my small intestine, 'similar to that of celiac', but not enough for it to actually be celiac, it seems.

I have just about the whole list of symptoms for celiac, including perifiral neuropathy, and when I eat gluten I will throw up within 15 min. That was offcours making the gluten challange quite trying, but I feel confident some gluten made it all the way down to my intestine every day.

 

Obviously I can not have gluten, for whatever reason, and the european 'glutenfree' foods hold alot of wheatstartch, of about 20 ppm of gluten, this is enough to give me some symptoms. So I only eat naturally glutenfree foods and tht works well for me, but I just can not understand how docs can say I don't have celiac, when none of my tests are negativ and with the symptoms and high sensitivity that I have?

Also, at the same time, I'm thinking that as I am more sensitive than most, my tests should be 'more' positive if all this was caused by celiac? I have had some of the symptoms ever since childhood, so this is not a new thing ,but I have eaten very little gluten the last few years.

 

Is it posible that I have had non celiac gluten intolerance for many years, that is just recently starting to develope into celiac? Or are the two not conected?

 

Some of the reactions I have seem sort of like allergic reactions, like itches, puffy face and stuffy nose, so I am now beeing sendt to a allegy specialist to see if I might be allergic to wheat, but I don't feel like that fits all thet well.

 

Does anyone have any thoughts or information aboute cases like this?

Were you already eating gluten-free when you got tested?

Mum in Norway Contributor
Mum in Norway
Posted
  • Author

Mellon, it's really not that bad. I would not do it for fun, but it only last like 5 minutes. You get a sedative in the back of your throat, so it does not hurt.

If you think you might have celiac, you should talk to your doc about the testing. And keep in mind that if you go glutenfree now, it will be h**l going back on gluten to be able to be tested later on.

Mum in Norway Contributor
Mum in Norway
Posted
  • Author

Kareng, I was glutenfree light for years, but not totally glutenfree, and I did a glutenchallange for about 5-6 weeks prior to the biopsy.

Mellon7373 Newbie
Mellon7373
Posted

Thanks for the advice, I will go to the doctor tomorrow and see about a blood test as I've only been gluten free for one day.

Mum in Norway Contributor
Mum in Norway
Posted
  • Author

That is good to hear :) One day will not make much of a differens. If the bloodwork comes back clarely positive, you can consider if that is good enough for you to trust it, or if you want to do the biopsy to bee 100% sure

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Mellon7373 Newbie
Mellon7373
Posted

My mum is trying to tell me not to get tested. she thinks I'm overreacting as I've had a lot of stress in my life recently. she said the doctors will just tell me that it's a stomach bug. I need to know how seriously doctors will take me? if I say I want the blood test will they give it to me? or will they be like my mum and tell me to consider other causes. She has said I should just stay off bread and dough products for now and see how it goes, so I'm going to do that since it's the weekend and I probably won't get a blood test til Monday anyway

Mum in Norway Contributor
Mum in Norway
Posted
  • Author

I don't know what your doc will sey, that depends. Some will have you tested 'just in case' for almost no reason, others will rather not test. But I realy would recomend you get tested before you go glutenfee. You can stay mostly off gluten for the weekend, but have half a cracker a day or so.

If you go of gluten and then back on, that i so much worse than just staying on the stuff...

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