AIBU to think I don’t have a gluten intolerance?

[Glutenfreeornot]

Hi! So the Dr a while ago suspected I have a particular health condition but said it’s a ‘maybe’, there was no official diagnosis.

Doing more research I found out many women with this condition are intolerant to gluten without knowing and that it’s inflammatory for them which makes the condition worse. Apparently to test if you’re intolerant to gluten you need to cut it out completely for at least 2 months, because that’s how long it takes for it to be completely removed from your gut. Then you reintroduce it and see if you have any negative reactions.

I joined a health group for this condition on Facebook where so many of the women have cut out gluten, then post that after having it again just a week or 2 weeks or a month later they have experienced a lot of stomach pain or diarrhea or constipation or other issues and discomfort that day. They conclude that they have been intolerant to gluten without knowing.

The thing is, I have cut out gluten for some time at different points but never for a full 2 months, either because there isn’t something else to eat or because I’m treating myself etc. But in those times I do eat gluten after a period without it, I feel fine and don’t really face any side effects. I think if I really was intolerant I’d be facing the side effects of eating it after cutting it out even if its just been a few weeks of cutting out, like other people (for example the hundreds who post on the Facebook group) have.

The Dr has told me I ‘maybe’ am not intolerant then but can’t be sure (and has said that the intolerance tests done by labs are usually not accurate).

Has anyone been in this position before? What do you think?

If testing for coeliac disease you need to be eating gluten regularly and a couple of times a day for at least 6 weeks. You wouldn't cut it out prior to testing

A little confused because there aren't tests for intolerances are there? As demented said, if you're being tested for coeliac disease then you need to be eating gluten.

If it's just an intolerance you're concerned about then it's entirely up to you whether you want to cut it out for two months to see if you have a reaction 🤷‍♀️

@dementedpixie hi thanks your response. I definitely don’t suspect coeliac disease which would be an allergy to gluten, I just mean an intolerance. So the same way a lot of people are lactose intolerant, drinking milk is harmful for them and would cause discomfort, but isn’t life threatening like coeliac disease or serious peanut allergies etc.

Sorry, I don’t understand…if the doctor has told you that in order to test it you need to cut out gluten for 2 months, but you’ve only ever cut gluten out for less than that time and feel fine, then that’s not cutting it out for 2 months is it? So how do you know?

I think if he thinks you have an issue with gluten he needs to do a blood test for coeliac and if that’s raised you keep eating gluten until you have an endoscopy.

He’s right that lab tests for intolerance arent well regarded. DD’s nhs consultant said not to bother with them, but to keep a food diary and a symptom diary and then remove foods she thought were causing an issue. Didn’t do this in the end as it turned out she had a connective tissue disease not food intolerances. Although she is coeliac as well.

Certainly sounds if you can have periods of eating it with no issues then you’re not intolerant.

@SpamIAm @OneRuleForThem sorry for the confusion! There are tests for intolerances/sensitivites where they apparently analyse your hair or something but they’re not accurate.

It wasn’t my doctor who said to cut out for 2 months but this is the health advice I’ve read. My point is, plenty of people have cut it for far less than 2 months and still find an adverse reaction when they reintroduce it (like the people on the health group talking about their experiences). So I’m wondering if it is safe to assume I’m not intolerant because if I was, surely the adverse reactions wouldn’t wait until after 2 months of cutting it out and reintroducing it to show up? Hope that clarifies :)

Is it hashimotos you are talking about? As gluten free does improve TPO antibodies for many sufferers but there are also other allergens that could also affect it. Have you also tried cutting out dairy?

So do you feel better in the short time you do cut it out?

And then when you reintroduce it you don’t feel bad again?

But then further down the line I assume you do feel bad as you’re Still looking for answers?

If you feel better when you cut it out maybe you are intolerant. And when you reintroduce it you don’t notice you feel bad for a while as it takes time to build up? 🤷‍♀️

Well, it took at least two months to get it out of my system after diagnosis - and by God, did I know about it when I got accidentally glutened. I know now if there's even been a tiny trace/cross contamination and it takes a good week to improve from that.

I've done elimination diets before and given up earlier (mainly because I was starving) and haven't noticed strong side effects from reintroduction, mainly because I hadn't noticed a huge improvement in the short time I did them.

I think that you need to do the two months to see any improvement before you can realistically recognise the trigger.

Have you properly been gluten free on these occasions. Its in all sorts of things soy sauce, sausages, burgers, lots of frozen potato products, gravy pate, soups so you may not have actually been gluten free. Do you have the symptoms?

@Wiaa

Have you properly been gluten free on these occasions. Its in all sorts of things soy sauce, sausages, burgers, lots of frozen potato products, gravy pate, soups so you may not have actually been gluten free. Do you have the symptoms?

Oh, that's a point.

Have you binned

Flour and raising agents
McCains potato products including chips
Most other brands' products including chips
Most chicken products
All Walkers' crisp/snack products
Branston Pickle
Readymade English Mustard
Spice Blends
Stock Cubes
Gravy
Soy Sauce
Premade sauces
Sausages
Burgers
All takeaways
Stews
Soups
Brown Sauce
Pickle and chutneys
Curry paste blends
Worcestershire Sauce
Malt vinegar
Marmite
Couscous
Pourgourri/Bulgar
Anything with oats - including gluten free ones at least for the first six months
Anything that doesn't have wheat/barley in the ingredients but has a May Contain label (as that means likely cross contamination at the factory)
Rye
Spelt
Vitamins
Snack bars
Dry roasted peanuts

You'll also need to thoroughly clean the toaster in case other people in the family are still eating gluten and if they ever use the knife twice to spread butter on their bread (or other toppings such as jam), they're all contaminated as well. As would stirring your dinner with the spoon used beforehand to stir standard pasta.

It's a massive change. Fortunately, DP has been behind it all the way although the night spent with me as I doubled up in agony, vomited constantly and cried with the pain possibly made the decision for him

If you haven't literally cut everything out, you won't be noticing an improvement or real difference when you eat more, as you've never stopped eating it in the first place.

If its an autoimmune disease a few people do report less symptoms and severity of flares eating less gluten.

My partner has an autoimmune disease. We are going to do the Mediterranean/anti inflammatory diet in the new year, which has low carbs (not gluten free though). Theres quite a bit of research out there about the Mediterranean diet and autoimmune diseases.

2 months seems a long time to cut something out If it's not needed. You can give yourself intolerances by cutting things out too long so I'd do some research on it. Look up elimination diets they give some guidelines on doing it properly.

@Wiaa @NeverDropYourMooncup I was quite careful, my main sources of gluten were pasta, bread and desserts but I don't eat things like frozen burgers/sausages/chicken products/potato products/gravy etc anyway.

Neverdropyourmooncup that's interesting, you say when you had cut it out for short times you didn't experience strong effects - but you did face something? What were those symptoms if you don't mind my asking?

@CovidCorvid that could be it but when I'm gluten free I just eat healthier in general. I have felt bad eating gluten free things too because it's not only gluten that could be an issue - for example the other day at a restaurant I had a gluten free fried food item and I didn't feel good afterwards as it was so greasy and oily. If I got the gluten version I'm sure I would've felt the same, but due to the same oiliness not the gluten. I'm looking for answers because if I'm not intolerant to gluten, I can at least enjoy treats with gluten from time to time without guilt/thinking it's inflammatory for me.

What @NeverDropYourMooncup said. Gluten is in so many products and you have to be really careful to avoid it. Especially eating out where places may cook foods together, use contaminated tongs etc. Hopefully you don't have a gluten problem as it is a total pain having to be fully gluten free for life.

I'm gluten intolerant. I know quite quickly if I've had it by mistake. Gut pain and massive bloating within hours. I also get itchy rashes on my abdomen. It took me years to realise the rash was related. But the gut pain is really obvious. I have had times in my life where it wasn't as bad. But do wonder if continuing to eat it caused Hashimotos and fibromyalgia. But it is restrictive. I can understand you not wanting to cut it out unless you really have to. When I was put on an elimination diet years ago, it wasn't for two months. They reintroduced foods every few days.

You need to find yourself a better doctor who has knowledge about gluten, and get a referral to a dietitian who can guide you.

You should go back on a full gluten diet and then have the coeliac screening test. There can be false positives and false negatives - hence why a biopsy is the gold standard for diagnosing coealiac disease.

I don't know anyone who trialled a gluten free diet without proper guidance (eg a dietitian) to have cut it out 100% - there was always cross contamination issues and they were still consuming foods that contained gluten, but because they didn't read the labels for ingredients,. (It's found in rye, barley, oats and wheat). These people were still consuming gluten, so it was a pointless exercise for them.

Coeliac disease isn't an allergy, it's an auto-immune disease that's triggered by consuming gluten.

Before my son was diagnosed with coeliac disease I tried to cut gluten out (doctors where just fobbing me off) and it made no difference, I now know I didn't actually cut gluten out as it's hidden in so many things. I did stop all the 'gluteny' things like bread, pasta etc but not the gravy, the sauce's, stock cubes etc etc

[quote Glutenfreeornot]**@Wiaa* @NeverDropYourMooncup* I was quite careful, my main sources of gluten were pasta, bread and desserts but I don't eat things like frozen burgers/sausages/chicken products/potato products/gravy etc anyway.

Neverdropyourmooncup that's interesting, you say when you had cut it out for short times you didn't experience strong effects - but you did face something? What were those symptoms if you don't mind my asking?

@CovidCorvid that could be it but when I'm gluten free I just eat healthier in general. I have felt bad eating gluten free things too because it's not only gluten that could be an issue - for example the other day at a restaurant I had a gluten free fried food item and I didn't feel good afterwards as it was so greasy and oily. If I got the gluten version I'm sure I would've felt the same, but due to the same oiliness not the gluten. I'm looking for answers because if I'm not intolerant to gluten, I can at least enjoy treats with gluten from time to time without guilt/thinking it's inflammatory for me.[/quote]
Massive migraine, mostly, on elimination diets. It was usual for my digestive system to go on strike for ten days plus anyhow, so feeling nauseous and stomach pain was nothing out of the ordinary - I couldn't pin it down to one thing because they were only ever seven day ones advised by the hospital.

As the damage also affects the part of the system that deals with milk and dairy products, I can't have dairy without feeling sick either. And as I said, an uncooperative digestive system has been my normal.

Getting glutened after time properly off it, though... The stench of death about me, Gut on strike for 22 days, pain like you wouldn't believe by day 21, nausea, then vomiting like it was the exorcist, gasping for breath, vomiting again, curling up on the bathroom floor then finally, finally, my system reluctantly agreeing to allow what I'd eaten three weeks ago to leave.

Yes, I probably should have gone to hospital. But covid - and I wouldn't have made it there in the bus.

Minor cross contamination is just some pain and nausea and the stench, along with a 7 day long digestive strike.

However, we have a chip shop nearby whose owner is celiac. GF fried foods never make me feel sick. But a theoretically GF item from another place who didn't take the time to show DP how carefully everything was separated - yuk yuk yuk. Nauseous within a very short time.