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Acute Response To Gluten Exposure...
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Started by cd42,

3 posts in this topic

Posted

My 5 y.o. was diagnosed last summer with Celiac and as far as we know hasn't been exposed to gluten since that time (although her ttg remains high). Tonight she was extremely exhausted and told me that she didn't feel like walking, barely touched her food and just put herself to bed--she seems sick, but no fever, no runny nose, no symptoms, but extremely tired. Of course, we are worried that this could be an acute response to gluten at school today (she had gluten-free cupcakes at school today, but I worry about cross-contamination), but I haven't heard of this kind of acute response to gluten. Does this sound familiar to anyone or is it just some kind of virus and I'm being paranoid. Any thoughts?

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Posted

I would hold off for a few days before jumping on the "glutening" train. She could just be tired. Coming down with something. A million things. I know it's hard. Every time my DS looks at me strange I wonder "Is it something he ate?" because that is in the front of my mind. Usually it is just him getting sick or tired or being 5.

Hang in there. Give it a few days. Even if it was something she ate at school there isn't anything you can offer but support at this point anyway.

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Posted

It's been a month since you posted - how did everything work out?

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Go To Topic Listing Celiac Disease - Parents of Kids or Babies With Celiac Disease

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    • egs1707
      Overwhelmed and unable to accept

      By egs1707 · Posted

      No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
    • ravenwoodglass
      Taking Advil to cope with pain?

      By ravenwoodglass · Posted

      I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Kricket73
      So could I be right or is he just an idiot?

      By Kricket73 · Posted

      Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • admin
      Account help

      By admin · Posted

      We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Gracey
      Taking Advil to cope with pain?

      By Gracey · Posted

      Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 

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