Another newbie query

Hi everybody. Just got 2 positive blood test results and I'm currently waiting for follow up . So....been trawling the net and found this site really helpful and definitely 'user friendly'. My question relates to symptoms and reactions to getting glutened.

I had an endoscopy 2 weeks ago which showed a small duodenal ulcer and I'm waiting for the Clo test result for possible helicobacter which I had 20 odd years ago and sort of pointed the direction for the current tests. The positive cd result from a blood test was a surprise so will probably need a second endoscopy to confirm! My symptoms have been more reflux related than anything else. My GP said not to start a gf diet until cd absolutely confirmed so I'm eating and drinking as normal.

What is unclear at the moment is that assuming I do need to start the gf diet and I then get glutened will the reaction be worse than my current symptoms? Most comments from people relating to reactions seem pretty severe - but of course I can't know how bad things were for particular individuals prior to going gf.

Hope this makes sense - sorry it's so long but any comments will be welcomed!

7 Replies

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  • Yes, your reaction gets worse the longer you are gf (gluten free). It works sort of like alcohol. You don't have any for a while, and suddenly you're a lightweight.

    I'm now 9 years gluten free and now get pain from the tiniest bit that is like the worst period cramps I've ever had times 10. On a pain scale, I'd rate it an 8 at least, and pre-diagnosis it was more of a 5.

    Good luck!

  • Many thanks for your reply - you have confirmed my suspicions and picked the same analogy [alcohol] that I've been thinking about. It's like a sensitiser - the less you have the worse it gets! Only being 3 days into my new journey I'm still holding on to straws and the thought occurs 'If I don't start gf then I won't feel any worse!'. But I do realise the fallacy in this! So it's research and trying to be +ve I guess.

    Thanks again ThatPandaGirl.

  • It varies. Some people don't notice any symptoms, just get the invisible damage. Others end up in hospital. At a recent conference the gastroenterologist said that getting quite an extreme reaction could be understood by imaging all your white corpuscles being an army that is used to working every day to keep you as well as possible...then they all hang around with nothing to do, so a tiny contamination causes them to charge about with enthusiasm. I know this doesn't help you plan for your reactions. You can probably also assume that the people that write or talk about reactions are at the more severe end of the symptom scale and so over-represent that type of reaction.

  • Many thanks for the reply and yes I can understand why it varies. I guess everybody hopes for black and white answers when first diagnosed but your reference to the invisible damage is one I've picked up on from other question/answers. I like your illustration re white corpuscles - describing them as an army is better than calling them politicians!

    Thanks again Lois.

  • Yes, my experience has been that the longer I am gluten free the more sensitive I am to it..I know within an hour of being glutened these days..

  • It makes perfect sense! Other have asked these similiar questions around this stage of the discovery. Congrats on being more proactive and gathering information on a possible condition. It shows a positive self caring image!

    You will find if you are Gluten Intolerant or Coeliac that your body and life feels so much after the specific damaging gluten is removed from your system and you prevent the accidental and intentional ingestion of it. The change while not immediate because the damage is usually systemic for those who are Gluten Intolerant or Coeliac a internal difference can be noticeable within a two week period and discovery of additional internal and external issue have seem to fade away.

    You will meet the whole spectrum of Gluten Intolerants whose sensitivity ranges from minor to severe and find this is not unusual because our conditioning, genetic makeup, previous and current lifestyle play a big part in how we feel and react to things.

    You will know how bad you felt before, and after a period you will know how good it feels to be gluten free, your sensitivity to the change will be the gauge you use for the severity of your reaction. I don't like to use the word tolerant because that implies no damage is being done. WIth Gluten Sensitive\Intolerants and Coeliacs Physical, Pyschological, body and quality life damages is being done!

    I have 5 kids with the commonly known Coeliac genes, 4 diagnosed celiac the last child a 7 year old is showing some possible outward signs but not yet diagnosed as Coeliac. My wife is gluten Intolerant and we have been a gluten free family for over 10 years.

    Please keep us abreats on your findings and if we can be of more help. Good Luck!

    Celiac Kids Club Contributor

  • Hi JG-ITSEC - you're helping to clear the fog around all of this.

    I think what I haven't got my head around yet is how I'm feeling at the moment i.e. what my baseline is. My main symptom is gastric reflux but it isn't debilitating, just nagging although it does seem more persistent than a year ago. So far I haven't been able to pin down any cause and effect. I stopped smoking six months ago and this has had no noticeable effect [gastrically] at all. I gave up alcohol at the start of the year for 2 months and again had no noticeable effect [likewise no difference when I started again]. Similarly I haven't been able to pin down any specific foods or food types.

    Is it just me wanting to find an obvious cause and effect relating to my obvious symptoms when it isn't always that obvious with cd? Although I've had positive blood results I haven't received the final confirmation of cd by biopsy so maybe I'm still in denial - perhaps [if and] when this happens I'll more readily accept that 'invisible damage' is actually being done and perhaps going gf will make me realise that I should have been feeling better than I actually did!! Like hitting my head against a brick wall - I'll only realise it hurts when I stop?

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