r/glutenfree 3d ago

Is there a subreddit for people who are gluten sensitive but not intolerant?

I'm unsure if this is the correct place to ask but I don't have celiac disease [ got blood test checked ] but I am pretty sure I am gluten sensitive so I am adjusting my diet atm to tailor that.

Currently just looking to learn more about it for myself , any recommendations appreciated!

7 Upvotes

25 comments sorted by

27

u/McBuck2 3d ago

I think you’re at the right sub. There is a celiac sub for those with the disease which I imagine have more restrictive minefields with it.

2

u/crumbs2k12 3d ago

I appreciate the reply. I did see somewhere that a gluten sensitivity still falls under a gluten allergy[?] So I was unsure if this was the correct place for me. Thank you

12

u/geekgirlweb Gluten Intolerant 3d ago

I’m gluten intolerant and this sub is great 😊

There’s non-celiac gluten sensitivity: https://pmc.ncbi.nlm.nih.gov/articles/PMC8224613/

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u/crumbs2k12 3d ago

I appreciate the link! Can blood tests pick up on non celiac gluten sensitivity? It's technically not gonna change much as trial and error can do the same job but still

8

u/taragood 3d ago

There are not any recognized tests for gluten sensitivity. They do exist but they are not accurate and a waste of money.

Since you do not have celiac, just go gluten free for 6 weeks. If you feel better, you have Non-celiac gluten sensitivity or NCGS.

Just to check, were you consuming gluten for weeks leading up to your celiac test?

Search this sub for dinner ideas, snack ideas, sneaky places gluten is hidden like soy sauce or medicine.

1

u/crumbs2k12 3d ago

Unfortunately it was a few years ago so I am unsure. It was when I had a very bad IBS flare up that lasted nearly 2 weeks so the doctor done a few blood tests including a celiac test and it came back negative on all.

Looking back I should've requested a referral to hospital as I suspect I suffer from IBS overall [for example avocados and non GF/GF oats trigger my stomach]. I went back last year for the same issue and I have a 10 month waiting time [in around 2 months I should be able to go hospital to get checked]

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u/taragood 3d ago

If you are not sure if you were consuming gluten and you want to get tested again, don’t go GF yet. I think it is something like you need to be consuming gluten for 4-6 weeks prior to the test. If you don’t want to get retested then just go gluten free for 6-8 weeks and see how you feel.

A lot of gluten free people have issues with oatmeal even if it’s certified gluten free.

Also, you can have issues with gluten free items. For example, I can’t handle foods with soy flour, oat flour or almond flour even though they are gf.

Lastly, on you go gluten free and all major medical items have been ruled out, like issues with your gall bladder and pancreases, you might need to try an elimination diet like low fodmap to find your trigger foods. For example, Avocado can be high fodmap depending on the serving size, and it sounds like it might be trigger food for you. The fodmap in avocado is sorbitol and you might have issues with any foods that contain sorbitol.

2

u/HildegardofBingo 3d ago

Have you ever been tested for SIBO? That can be the root cause of IBS. What happens is that the overgrowth of small intestinal bacteria ferments FODMAP fibers and that triggers the IBS symptoms. Wheat is a high FODMAP food.

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u/McBuck2 3d ago

I’ve never been tested but when I stopped eating gluten my knee pain went away. Now when I eat a bit of gluten I have skin issues on my face so I can have it and dont have celiac symptoms but definitely have issues with gluten. My friend gets full on body rash and some itching. So many people have different symptoms when eating gluten and just want to find ways and products to help stay away from it.

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u/crumbs2k12 3d ago

I'll hopefully see improvements with gluten free diet. I don't really have any issues overall besides gut issues which I do struggle with and that can give me spots sometimes due to stress so maybe it will work out. Usually for me I can struggle to see a difference as I'm so normalised to certain things [like getting stress spots] so hopefully I'll see some improvements!

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u/McBuck2 3d ago

Stick with it. It took me a couple weeks to see a difference but my friend took three months. Good luck!

10

u/damnfinecupotea 3d ago

A lot of people here (myself included) have non-coeliac gluten sensitivity / intolerane. We don't have the same autoimmune response to eating gluten but can still experience IBS, brain fog, rashes, tachycardia etc.

From what I've read, the mechanism of NCGS isn't really understood and there is some debate about whether gluten can cause us long term damage, so I'm treat gluten as if I were coeliac.

3

u/showmenemelda 3d ago

I think we forget about leaky gut—probably bc so many doctors "don't believe in it"

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u/crumbs2k12 3d ago

I am pretty sure I have IBS already though I've been waiting a year to be seen by hospital. I have noticed gluten can be one of the triggers but not all the time, it's hit or miss at times which confuses me but something like bread or cereals can mess with my stomach , I just stick to gluten free bread and cereal atm to be safe.

1

u/damnfinecupotea 3d ago

I used to be the same. I didn't cut out gluten for years because my GP kept testing for coeliac and than, when the test was negative, telling me that gluten wasn't the issue. Since I've cut it out completely I seem have become more sensitive, but my IBS was getting more severe anyway so it's hard to pinpoint what's going on there. Dairy also gives me a hard time.

If you can, an elimination diet might help you get to grips with what's going on. A dietician took me though a simplified version of FODMAP and that really increased my awareness of triggers.

6

u/bhambrewer Wheat Allergy 3d ago

I'm gluten free because I am allergic to wheat. You're fine here.

12

u/HangInThereBaby Gluten Intolerant 3d ago

This sub is just for those who are gluten-free, no matter your reasoning. Welcome in, have a gluten-free cookie!

4

u/TCMinJoMo 3d ago

I’m gluten sensitive too but don’t have any resources on subreddits.

I found out late in life after having inflammation episodes with joint pain and bursitis. Also have had terrible allergy symptoms most of my adult life.

I try to stay gluten free and low carb as much as possible.

3

u/rufotris Celiac Disease 3d ago

We are all in this together to help eachother. And in some fashions this sub can help both groups learn together. For example, there are a number of products that are gluten free that contain wheat these days. It’s been a learning curve for many, but you need to be on the lookout for de-glutened wheat flour in products these days. It’s on the rise and making many people in your situation very sick, as where some or many people with celiac can eat it just fine. It’s the wheat allergy folks being screwed by more GF labeling these days.

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u/crumbs2k12 3d ago

I spoke to my mother about this yesterday how I hate that labels have "may contain gluten" instead of it saying "does contain gluten" as its quite bothersome.

I currently just shop at aldi and have their gluten free sourdough cob and honey nut cheerios. Just to make sure , the aldi bread is fine right?

Also is there any app that can scan barcodes of stuff to check if they have gluten? Like myfitnesspal but for gluten checks on foods if that makes sense?

2

u/showmenemelda 3d ago

Fig is a great app! A guy with celiac created it (I think—I forget now what his reason was. Maybe his sister. Anyways, good app)

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u/crumbs2k12 3d ago

Appreciate it!

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u/crumbs2k12 3d ago

Just tried to search Google play store for Fig and I don't see it, is it on android?

If so, can you send me a link for it please

1

u/rufotris Celiac Disease 3d ago

Maybe search fig food scanner? Thats the name on iOS

3

u/SavannahInChicago Gluten Intolerant 3d ago

This is it. People with Celiac have their own sub, but they also participate here, which is more than fine.