Wheat/gluten intolerance?

[AnaisNun]

Sorry if this is long- if anyone has experience of this, I’d be really glad to hear advice/stories-

I’ve had a cluster of symptoms spring up over the last couple of years - weight gain (not extraordinary but hasnt seemed proportionate to the amount I eat), rosacea on my cheeks and nose, spots, chronic episcleritis in my left eye, a very very dry scalp that doesn’t so much flake as peel. Dry hair and excessive hair shedding. Undefined abdominal pain that “wanders” but can extend down into my bottom or up into my ribcage and seems to centre around my lower tummy. Some bowel issues (“fluffy” looking poo!) Very tired, often, almost fatigued...

I’ve had a rough five years (postpartum MH issues, relationship breakdown, single parenting a baby/toddler, career change to a stressful, high pressure full time role, 3 house moves, debt issues, some family problems...) and thought maybe it was all just manifesting on my body. Probably not helped by the fact I’ve gone from clean/keto diet to “eat whatever” and 6-8 work outs a week, to 0 in 4 years...

Anyway. For years I’ve known wheat/gluten don’t “agree” with me and before life went mad, I just avoided them- if I ate them
I might bloat and feel a bit rubbish- not the mor extreme symptoms I’ve had the last couple of years.
Excluding key foods isn’t so easy when you’re feeding a toddler and on a low budget... but I cut them out of my diet again 2 weeks ago on a whim/hunch. Tonight I looked in the mirror before coming to bed and realised -

• my skin is clearing
• my eye is much much less bloodshot
• my scalp is much less dry/has stopped peeling
• I haven’t had abdominal pain for a week (except period pain but that feels different)
• poo is normal

I suspect this points to a wheat or gluten intolerance that needs “addressing” after all, as I haven’t changed anything else- but I wonder if anyone can tell me-

• does this sound like it’s the case? Or am I putting 2 and 2 together and making 5?
• is it something to mention to the GP?
• is there any point having food intolerance tests?
• what can I do to help my body heal if this is an intolerance? Probiotics? Vitamins?

Any advice greatly appreciated. Thank you!

Definitely get a food intolerance test done I think its called the Vega test. I had one done and I am intolerant to a lot of foods and felt a lot better when I refrain. You then reintroduce and see what you can tolerate. Unfortunately I am still not able to eat any on my list. My problem is I am bored with what I can eat.

If you're thinking Coeliac Disease, it's definitely worth getting tested as there are definitive signs that will confirm diagnosis. I'm in the US and it's normally a blood test for antibodies and an endoscopy to check for a specific type of damage to villi in the small intestine. There are also genetic tests to see if one is predisposed to it. But remember that in order to get a 'positive' blood test you must be eating gluten. Talk to your GP.

Coeliac is genetic. Do you have relatives with unspecified 'tummy trouble' or they say certain foods just 'disagree' with them? Is there a high rate of lymphoma in your family? These can point to undiagnosed Coeliac.

If you're talking about NSGI (non-specific gluten intolerance) that's a tougher one. There aren't really tests for it per se. It's more 'don't eat it and see if you feel better'.

A food intolerance is not the same as a food allergy. And 'vega testing' is not considered accurate.

www.winchesterhospital.org/health-library/article?id=37438

@liverpool1981

Definitely get a food intolerance test done I think its called the Vega test. I had one done and I am intolerant to a lot of foods and felt a lot better when I refrain. You then reintroduce and see what you can tolerate. Unfortunately I am still not able to eat any on my list. My problem is I am bored with what I can eat.

The vega test is a load of rubbish as are other food intolerance tests. Don't bother with those. The only way to work out if you have an intolerance is via an elimination diet.

If you think you might be coeliac then GP can test for this via a blood test (but I understand it's not 100% reliable. You do need to have been eating a good amount of gluten in your diet for a number of weeks beforehand. They can also do a bowel biopsy if you want something more categorical but this is obviously more invasive.

I would say if it’s working, continue with cutting out wheat! Simple as that. Sometimes tests don’t pick these things up. And most of the time doctors play guessing games...And give you pills to mask the symptoms and not treat the cause.

It’s good what you are doing is helping. Definitely try probiotics to help heal the gut. And interminably fasting.

It's a good idea to get properly tested for coeliac disease. You do need to be eating gluten when you're tested though. Blood tests can sometimes give a false negative so be aware of that. It can affect all parts of your body not just your digestive system. It's important to figure out if you do have coeliac disease as if you need to be on a strict gluten free diet cutting out wheat won't stop damage to your intestines which would lead to long term health problems.

Remember that 'wheat free' is not 'gluten free'. Wheat is only ONE of the grains that has gluten.

Wheat (all types), barley, rye, and oats (unless certified GF) all contain gluten.

Best to get tested to know for sure, an issue with wheat is not the same thing as coeliac disease so important to know what is the issue exactly.

Hey all-

Am one week into the gluten challenge for CD - doctors orders- and feel dreadful.

Rosacea back with a vengeance. Episcleritis back. Crippling abdominal pain particularly in the evenings, that wanders up my ribs and down to my bum, particularly painful into my hips. Exhausted for the last few days.
Also finding joints and back incredibly sore - almost arthritic feeling?
All in all very sorry for myself. If it’s not CD after all this I’ll be shocked- relieved, but shocked.

Any advice for how to manage the next 5 weeks hugely appreciated!

Personally, I just wouldn't put yourself through this. Gluten eating that is.
I'd always wondered if I had issues but like you, my diet was pretty healthy. I've had IBS for over 2 decades and now I really wonder why the hell I wasn't tested for celiac????? But I wasn't.
Then I had a stressful few years, young kid, various family members were shitty, perimenopause etc and my body went wrong in similar ways to yours. And I was used to IBS but this was another level. I was staying with my partner's friend and he was behaving pretty crappily and I was eating loads of pizza and I just blew up. Went home, did research and just stopped gluten. My hair started growing back, the bloating was less, my energy was better, periods kindof returned briefly etc

It's dull, esp on hols but I can't go back to before. I think I have under-lying thyroid issues. I do wonder about the unreversable damage I've done to my guts when I could've been tested 20 years ago.

If you get a diagnosis, what then? They'll tell you to go gf, right? So why do this to yourself? There's sadly no cure, no miracle medicine - yet.
But whatever, good luck!!!

I had similar issues and did the gluten challenge too. Thought I was going to die. Had to take time off work sick. Couldn't leave the house due to constant need for the loo etc.

Had the blood tests, endoscopy and colonoscopy biopsies, and i apparently don't have coeliac disease. Just a severe intolerance to gluten developed later in life 🤷‍♀️ go figure.

But it was worth it, even though it was absolutely shit. Yeah, you'll probably end up eating GF either way. But Coeliac disease can be problematic. It is an autoimmune disorder and can lead to other issues later in life. It's not to be taken lightly, so it is worth knowing whether or not you have it. Medicine is often not an exact science, but the testing in this case is fairly rigorous.

Good luck

I once went through a similar string of symptoms. Started with psoriasis patches on my scalp and arms, then tired all the time, brain fog, acid reflux - took about 4 visits to GPs before one mentioned stress. At the time my life was NUTS!

From what you describe you've done a number of things that are cumulative. Stopping exercising - that increases your stress level, because exercise reduces stress. NB that's also likely the reason for the weight gain. Stress also tends to result in poorer quality sleep, as does lack of exercise and poor diet. Reading your post you sound SO run down.

My advice would be to forget worrying about things like gluten intolerance (unlikely) and start focusing on reducing your stress levels. Various ways of doing this, but exercise is a good one, particularly anything outdoors. Set aside 1h each day for this and stick to it! If you feel you cannot afford this time, then you need to change your life so that you can because if you don't, the stress will only get worse.

Food intolerance tests are inaccurate. I wouldn't waste my time or money. I had food allergy tests done at the hospital and all came back negative. ten years of suffering ill health and not just tummy troubles I begged to be tested for Coeliac. It was positive and had an endoscopy to confirm the diagnosis. Get tested.

It's unfortunate that one has to eat gluten in order to get an accurate result for Coeliac Disease. Unless of course one does the (very expensive) genetic testing and if you have the gene(s) just 'assume' one has it based on symptoms.

I know it's hard but just persevere.

It's worth struggling through the gluten challenge, because the kind of strict you have to be to successfully treat coeliac disease is a right pain in the arse, and not something you want to be doing unless you absolutely have to. To spend all that time and effort and money on completely eliminating gluten from your diet, with all the resulting inconveniences and difficulties, for the rest of your life, you want to be really sure about it. And without that definitive positive coeliac diagnosis, I doubt you'd be able to maintain the level of motivation needed to stick to the coeliac diet. Also, it's unfair on others to make them accommodate a strict coeliac diet if it's not medically necessary. If it's not coeliac disease, you can afford to be more experimental because it's more likely to be about unpleasant symptoms rather than invisible damage.

I am indeed perservering; I think it's something like 10(?) days now... it's extraordinary, the effect it's having. I'm shattered, all the time. I slept for 11 hours last night, and every joint is killing me - MY THUMB JOINTS HURT?!

I completely take on board what posters are saying re: stress and lifestyle - I agree, absolutely. But I changed nothing except eating/not eating gluten when my symptoms suddenly eased - started again for the gluten challenge and theyre back with a vengeance.

The episcleritis and rosacea roaring back is particularly upsetting, because they're sore, and sore faces always feel particularly miserable don't they? Brings out the child in me and I just feel wretched.

BUT - only 4.5 more weeks to go. And even if it's not Coeliac I think I'll be giving bread a swerve for a while. Utterly sick of it.

@AnaisNun

I am indeed perservering; I think it's something like 10(?) days now... it's extraordinary, the effect it's having. I'm shattered, all the time. I slept for 11 hours last night, and every joint is killing me - MY THUMB JOINTS HURT?!

I completely take on board what posters are saying re: stress and lifestyle - I agree, absolutely. But I changed nothing except eating/not eating gluten when my symptoms suddenly eased - started again for the gluten challenge and theyre back with a vengeance.

The episcleritis and rosacea roaring back is particularly upsetting, because they're sore, and sore faces always feel particularly miserable don't they? Brings out the child in me and I just feel wretched.

BUT - only 4.5 more weeks to go. And even if it's not Coeliac I think I'll be giving bread a swerve for a while. Utterly sick of it.

OK sorry missed your follow-up posts about stopping/restarting gluten intake.

Could be celiac but could still be stress (placebo/nocebo effect going on) - NB could easily be BOTH - some symptoms celiac related - others stress related and made worse by you suffering the celiac symptoms.

Importantly though - don't suffer 4 weeks of severe symptoms! If it is celiac you could do a lot of damage to your body. You should be able to request a biopsy done after just 2 weeks. Get back to your GP and explain how much you're suffering. Get a second opinion if they won't do it.