Serious reactions to gluten

[tammi22]

Hi,

I was diagnosed with IBS last year, however since June/July this year I have been struggling when eating gluten. At first the reaction was just pain and bloatedness - so I just mistook it for more IBS, but this has been a growing issue for a while now. I was avoiding gluten at all costs because of the pain it was giving me, but had to continue eating it for a blood test- which came back negative.
More recently (for the past month or so), whenever I eat gluten, my face bloats and goes red, I get a headache, I go breathless, I feel so Unwell and basically I have been avoiding it completely.  (and my bowels really hurt? like the bottom of my back as well). Except earlier this week I accidentally ate something with it in and the flare (or reaction) was unbearable and I couldn't even get out of bed because of the chronic pains. I kept getting pains the day after as well (which was assumed and have only really started to recover now.. sort of). I've been strictly not eating gluten (when I've been eating since the reaction), however just earlier today my face has gone red and I've had the symptoms I get when I have gluten. The only thing I've eaten today are jelly beans (gluten free) and green tea, and I am wondering if it was the over-consumption of energy or sugar? I'm still suffering with the redness at the moment but am not feeling awful (yet). I've been concerned whether the shampoo I'm using has it in (I know you have to swallow it, or toothpaste or anything?)

I am at the doctors on Monday, however I just want to know if this is celiac or not? even though the tests were negative, and I can't even imagine eating gluten again to see if it shows on a blood test because of how it makes me feel. I'm trying my best to only eat things which say 'gluten free' (and pretty much everything dairy free due to IBS). I'm just so confused and just some advice with how to deal with this would really help  

Thank you!

[GFinDC]

Hi tammi,

Welcome to the forum!

I am putting in a link to the newbie thread in the Coping With section of the forum.  It has some info for celiac newbies that might help you.  If your symptoms are that bad, then it makes sense not to eat gluten and to treat it as celiac disease IMHO.  Celiac disease testing isn't perfect and people do fall through the cracks.  You don't have to get a formal diagnosis to eat gluten-free.  Some people find it easier to stick to the diet with a diagnosis, but that isn't true for everyone.

Regardless if it is NCGS or celiac disease, the only treatment is the gluten-free diet.  Dairy often is a problem for untreated celiacs because the damage to the gut affects the production of enzymes that digest dairy sugar.

The doctors will often do only one of the antibody tests to screen for celiac disease.  Not everybody shows up on that one test though (ttg IGA).  So a full celiac disease panel is a better bet to catch people.