Please shed some light on my gluten woes

[Synecdoche]

I would really appreciate some thoughts or advice on my situation please.

A brief background so as not to drip feed: I've experienced gastrointestinal symptoms of early satiety, nausea and discomfort/bloating since Spring 2016, which has been attributed to delayed motilty/gastroparesis. I have POTS and possible EDS so this is a common comorbidity. I've only just seen a gastroenterologist (December 2017) and am booked I for an gastroscopy and biopsy at the end of this month, as well as a Gastric Emptying Study. I have significantly low B12, calcium, vitamin D and folate levels (discovered in November 2017) which are being treated. I'm under a dietitian.

Since August 2017 I've been on the elimination stage of the Low FODMAP diet which includes cutting out all gluten. This has made me feel so much better - massively reduced nausea and enabled me to eat solid food, put on weight, feel less fatigued etc. I know the elimination phase should only be 2 months but to be honest I have been really enjoying not feeling ill constantly so have been unwilling to rechallenge foods.

So now for my actual question... The first food I rechallenged was white bread. I had one slice on Tuesday lunchtime and two slices on Wednesday lunchtime. I should have had three slices yesterday to complete the challenge but felt too unwell to continue.

My symptoms on Tuesday were: bloating, abdominal discomfort (not pain - more a feeling my stomach had been 'scraped out') and constipation.

My symptoms on Wednesday were further abdominal discomfort, constipation, rising nausea and encroaching fatigue.

My symptoms on Thursday were extreme nausea all day, extreme fatigue (falling asleep, unable to get out of bed etc), further constipation and a mouth ulcer.

I've yet to eat or leave my bed today.

For those of you with coeliac or gluten intolerance, are these the sorts of symptoms you get after eating gluten? I had a blood test when I was eating gluten in June 2016 which came back negative. Subsequent blood tests have been since I have been gluten free. I have now had the gene test but no results yet. I am having biopsies with my endoscopy in a couple of weeks but obviously I have been gluten free and I know the Coeliac UK gold standard for the gluten challenge is 6 weeks prior to endoscopy. I did mention this to my gastroenterologist but he didn't seem concerned.

So questions...
Does my symptoms in response to my food challenge sound like coeliac? Or gluten intolerance?

Should I continue with the next two challenges that are pasta and weetabix?

What's the likelihood of getting a diagnosis if I am coeliac with my upcoming gastroscopy? Given my recent vitamin deficiencies but the fact I have been gluten free - how long does the gut take to heal?
If not coeliac, what else could this be? Fructans intolerance? Gluten intolerance?

Thank you in advance x

You give a history very very similar to mine

I am what is classed as a ‘hidden coeliac’ 1:9 don’t show up on blood screen due to immune sub class deficiency and an inability to express antibodies so can be missed during screening

Thanks for your reply schroedinger. How were you diagnosed in the end? Hope you're feeling better now?

You describe symptoms that could be attributed to glutening, we all react in our own ways and level of severity

Your deficiencies are classic coeliac ones, are you correcting these with supplements?

It takes a long time to heal properly if you’re older (about a year) but some of us never fully heal and need to be very careful and supplement for life

If you start eating gluten now possibly it would show up in the gastroscopy as you had such a big reaction when you had those slices of bread. If you think you can handle being very ill for the next couple of weeks I'd try it to see if you get a diagnosis but if you don't think you can handle it then I'd just keep off the gluten now and assume you have some kind of intolerance to it.

Yes I'm taking oral vitamin D, calcium and folic acid supplements and B12 injections every three months (after my initial loading dose). I'm in my mid-twenties.

I didn't realise coeliac symptoms varied so drastically and how careful people have to be with CC until I started researching it myself. Respect to all coeliacs!!

Natsku thanks for your thoughts - that's really the question isn't it, how important is a potential diagnosis to me?

I suppose I'm hoping for a negative on the genetic test so it would rule it out for good and I can just continue being gluten free for 'whatever reason'.

If you suspect coeliacs then you shouldn't exclude it from your diet before tests - gluten needs to be present in order to be included/excluded from any diagnosis. My DD is coeliac, she was diagnosed aged 3 after a raft of tests as she was "failing to thrive" but no specific symptoms. She had 2 biopsies, the first was inconclusive. She's classed as asymptotic, her only reaction these days if she has gluten is tiredness.
She's 23 now, she did a gluten challenge aged 16 in order to eliminate the possibility that it was an incorrect diagnosis aged 3. She had gluten food (i.e. She ate "normally") for 6 months and was re-tested & coeliacs was confirmed and she resumed her GF diet.
Good luck, I hope you get a resolution to your problem.

Thank you BearPear - I didn't suspect coeliac until my reaction to the bread this week (was excluding gluten as I was put on the low FODMAP diet) as I'd had negative blood screens. And now here I am.

Hope your daughter is well after her long journey

If you're not eating substantial amounts of gluten daily pre biopsy, it won't be reliable. It sounds as though gluten Blood test has quite a high false negative rate, as PP's already pointed out.

Has anyone checked you for ovarian issues? Satiety, bloating and gastro issues might tally with those (but sounds as though you're already seeing a correlation with gluten intake).

One thing to flag: you can have a non IgE mediated allergy to gluten without being coeliac, so even if a biopsy was negative, doesn't mean gluten is doing you any good!

Thanks for your thoughts david - I haven't had any investigations into ovarian issues so I shall have a look into that and talk to my GP when I see him if anything tallies.

I'll also look up that allergy you mention. It looks as though I'll be off the gluten regardless of results and may just have to accept that and be grateful it makes me feel better. But I'm the kind of person that likes reasons and data!!

⚘

As you’re b12 deficient it’s also very important to have a good folate level, without you will have circulating b12 that can’t be absorbed and utilised adequately

Given the multiple deficiencies, it's way more likely that there's gut malabsorption than any ovarian issue.

The non IgE allergy is just what's wrongly called gluten intolerance - slow acting allergic response.

Hi OP,
I have really similar issues, right down to the EDS/POTS/gastroparesis.

I also exclude gluten, and have since gained a lot of weight (from BMI 14 to BMI 19) and have far fewer episodes of bloody diarrhoea (tmi, sorry), for which I used to need regular blood transfusions. I also have a negative blood test!

One thing that was mentioned to me by my dietitian was that, on reintroducing gluten, everybody - whether sensitive or not - will go through an initial phase of readjustment, which can be quite uncomfortable. Also, the extent of the reaction does not tally with the amount of gluten, so you may experience just as much/as little discomfort with a whole pizza as with one slice. In order to do a proper challenge, you would therefore have to push through this initial stage, even though it would be unpleasant.

Just thought that info might be useful when deciding what to do....
Good luck