Thank you for empowering me and for reducing the chance of a false negative! + Any advice? (Diagnosis and gluten challenge)

Tl/dr: Thank you all! Thanks to reading threads on this sub (and r/Celiac) I felt confident enough to visit the GP and ask for a test. And I reduced the chance of a false negative blood test (the GP advised to take a blood test straight away, while I haven’t eaten gluten the last two months…). Also: do you might have any advice regarding the ‘gluten challenge’ / eating gluten for many weeks?

I was nervous prior to my GP-visit: in the past doctors (and myself!) have brushed away my symptoms as psychosomatic (I also have CPTSD and I have had a panic disorder). I know stress is definitly a large component, but there is more to it. About 8 years ago my previous GP diagnosed me with IBS and simply stated that I “just have to eat less spicy, be less of a hypochondriac and worry less about the symptoms”. Reading some of your relatable stories was really validating, and encouraged me to talk to my GP!

My GP confirmed that I am probably sensitive to gluten and might have celiac. She referred me to a dietitian to do an elimination and reintroduction diet for IBS and NCGS, and help me to design a healthy diet (I already eat healthy, but I am also eating mainly plant based/vegan which might be a challenging combination). She also suggested that I would get some blood work done for Celiac… “straight away”. She didn’t know that the blood test wouldn’t be reliable if you haven’t eaten gluten on a daily basis… I was so glad that I knew better. Otherwise I would just immediately have gotten my blood test done and I would have more change for a false negative.

I went gluten free before seeing the GP (big mistake). I haven’t eaten gluten, except for trace amounts, for about 2 months. And I have completely avoided (or try to avoid) trace amounts the last couple of weeks (except for a double blind home test with oats and gluten free oats).

Today I ate one slice of bread and I seemed to react fast (brain fog, tired / fatigue, weak and tense feeling in my limbs, painful joints, mild headache, ‘physical anxiety reaction’ / stress reaction / feeling restless and mildly panick feeling – and later on as an extra some stomach cramps. This post takes me so long, and I blame the damn brain fog [edit: and probably also my worries about how I can make it through this challenge]. I am putting it mildly when I say I am not looking forward to the next couple of weeks. I am even beginning to doubt if getting tested is worth it, and if I will even be able to continue eating gluten for weeks.

Do you have any advice on eating gluten?

  • Any tips on how to schedule eating gluten? To make it through I want to minimise the impact on my sleep, which I think is mostly bothered by stomach aches, joint pain and anxiety/restlessness. I already make a lot of effort to ease down in the evening etc. And I wish to be able to continue my therapy sessions and my responsibilities, which means I have to take the fatigue, brain fog and headaches into accout. The symptoms don’t seem to have a super consistent timing, so scheduling might be difficult. [Edit: I also think I have to go easy on myself when I feel not okay].

  • Any tips on how to make it less difficult? I already decided I can stop anytime I decide it isn’t worth it. I will eat my favorite gluten snacks, drink lots of water and I have a hot water bottle and loose clothing.

  • How much gluten did you eat? My GP advices ‘a normal amount’ and at least two daily meals with gluten. Where I live a ‘normal amount of gluten’ is a lot: typical Dutch diet consists of bread or (regular, non-glutenfree) oats for breakfast and bread for lunch. Sources say adults should eat 2 slices of bread (Celiac Disease Foundation) up to 10 grams (4 – 5 slices of bread (Coeliac UK)) daily.

  • How long was your gluten challenge? I have read that there are different guidelines, 2 weeks (Celiac Disease Foundation) , 6-8 weeks (Celiac Disease Foundation) up to 12 weeks (Coeliac UK). I was only eating gluten free for 2 months. Would this mean that 6 weeks would be enough? The GP said “just a couple of weeks, maybe two”, but I don’t trust her expertise on this issue because at first see adviced me to do a blood test straight away. I can do the blood test any time I want to. I know you are not doctors but maybe you have some insights.

Any other tips?

Thank you so much!

Thanks to the Courtesy of :

https://www.reddit.com/r/glutenfree/comments/djp0vm/thank_you_for_empowering_me_and_for_reducing_the/

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