Did you try going gluten free before ... - Gluten Free Guerr...

Gluten Free Guerrillas
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Did you try going gluten free before your celiac diagnosis?


First of all, sorry for posting without a diagnosis. I am in another community here (breast cancer) and it annoys me a little when people just post scares before actually going to the doctor or anything. Maybe I am just grumpy.

I am already lactose intolerant (and vegetarian), so I am really not looking forward to adding another restriction to my diet. Definitely not thinking of this as a diet or lifestyle choice.

I have had some gut symptoms (pain, diarrhea, gas) for a few weeks now and I am just thinking of this because I do have people with celiac disease in my family and a genetic marker even showed up on my 23andme results. Anyone here with variants detected in the HLA-DQA1 gene?

I know the right answer is to just go talk to my doctor etc. I am just a little rebellious because of previous experiences in healthcare🙄.

In summary, I want to try to cut gluten on my own to see if anything improves. If you have done that I would love to read about it. Thanks!

11 Replies

Has your vitamin B12 level been tested?

I didn’t go gluten and dairy free until well after my B12 deficiency was diagnosed.

nanda29 in reply to pvanderaa

No! But I have always taken B12 supplements...for being vegetarian. I had it tested sometime last year. I guess it could still be down? Thanks for the tip


You probably don’t want to hear this – however it’s a really bad idea to cut gluten from your diet without going for a Coeliac blood test first. Especially if there is a history of it in the family.

I understand that re-introducing gluten after a period of being gluten-free can be a nasty business (which you would normally need to do to get tested). Many will report that symptoms come back so much worse than before!

I had a lactose intolerance for a number of years before I actually found myself in the doctors office being tested for coeliac disease. I put the tiredness I was experiencing down to being a vegetarian and perhaps some mild anaemia. Both were true - but both were also caused by having CD. My guts were being attacked by my own immune system, affecting the absorption of nutrients.

I suggest biting the bullet and getting that doctor’s visit over with. It’s actually such a simple procedure. If any of your first degree relatives have coeliac disease, then you have an automatic right under NICE guidelines NG20 to be tested.

If the test comes back as negative then you can do what ever you like with your diet.

Take care. x

So one thing I discovered is that 39% of the population actually has the gene for coeliac disease, but despite that, only 1% of the population goes on to develop it. Having the gene is therefore no guarantee that you will develop coeliac disease, so don't worry too much!

I would generally encourage anyone to be tested before cutting out gluten from their diet, because reintroducing gluten to allow yourself to be tested later can cause far more severe symptoms, and many people give up before it gets to testing day. I always think it's helpful to have the diagnosis confirmed, because you get a better level of care if it's confirmed (dietician appointments, bone density scans, prescriptions).

I hope you can get to the bottom of what's causing your symptoms :)

I told my GP about my pain and diarrhoea and he said it was due to another autoimmune liver condition I have so I battled on. Things got worse and my daughter gave me a book about gluten called Grain Brain. I then tried cutting gluten and the very next day I felt better and the day after I felt normal again. I told my GP who ordered a blood test which showed antibodies for coeliac. I was referred to hospital, told to resume gluten and an endoscopy appt arrived. I had been back on gluten for three and a half weeks when I had the endoscopy but it was enough for a diagnosis of coeliac disease. The day after the endoscopy I went gluten free and have been ever since. Hope this helps 😊

I would have to agree that it is better to get the standard coeliac test done (however flawed) while you are still eating gluten, as best advice is not to go back on for testing. Micki Rose (in The Gluten Plan) says that DQ1s have been shown positive in non-coeliac gluten sensitivity and that it may turn out to be the gene related to gluten neurological disorders and/or skin disorders. I stopped eating gluten because of acid reflux, got a fairly drastic reaction and realised I had had an unidentified issue for many years so will not go back on. If I could afford it I would do a genetic test for my own interest. Of course the gene still needs to be triggered. Micki Rose again - "Dr Marsh said he advises a GF diet for people with the coeliac genes who have symptoms even when all tests are negative. He also recommends long-term monitoring of people with the genes with no current symptoms because "we don't know who will express the genes or not" "

Well I had the blood test and it came back negative for coeliacs, I also had a thyroid function test. Doctor says everything OK, you're fine. Well I knew I wasn't, I had upward of 20 symptoms. I've now been off the gluten for 7 months and the symptoms what have resolved or improved are as follows,

1) Sleeping 10/11 hours a time-gone, i'm OK with 7 now.

2) Tingling finger ends-gone.

3) Anxiety-gone.

4) Depression-gone.

5) Lethargy-considerably improved.

6) Dizziness-Considerably improved.

7) Brain fog-considerably improved.

8) Being argumentative-considerably improved.

9) Tinnitus-Still present.

10) Rhinitis- considerably improved.

11) Lactose intolerance- Not sure now, I keep away from it.

12) Diarrhoea- Gone.

13) B12 deficiency -Gone.

14) Inability to sweat-Gone.

15) Shivering and feeling cold- Gone.

16) Vit D deficiency-Gone.

17) Undigested food in stools-Gone.

18) Steatorrhoea- Gone.

I won't be going back to eating gluten, if it means I don't get a diagnosis? Well I can live with that.

Suit in reply to Sotonowl

Wheat is a mystery. But professors are slowly getting more knowledge about it.

Until then, it's their loss if they do not hear what patients are telling them.


Sotonowl in reply to Suit

And that's the problem, they don't hear what they are told.

Did you cut out meat because of stomach issues? I did. I reacted as if I had a bad food poisoning every time I tried eating meats. I was so bad I even passed out.

I'm not properly diagnosed. I tried to cut out grains because I was in a very bad shape, and way to exhausted to be able to stand up for myself. with a brain that didn't work at all at moments, I couldn't even advocate for myself. But those were not the reason why I cut grains out. I was having really bad pain in my bones. Everywhere. It was manageable when only a few parts was affected, but with every single part of the body I just couldn't take it anymore. I felt like I was dying, slowly. And as you I have plenty of coeliacs and autoimmune diseases in my family, so I gave it a shot, just in case.

In a few days the pain was but a memory. In a few weeks I began to become a new person. And in a few months I felt like an invincible Phoenix.

Today I have glutenophobia.

I did a weak positive blood test after 9mts with strict GF diet, the very upper range. I boosted my possibilities of testing positive with three bites of a cake.

It's quite annoying to know that they checked me for diabetes several times as a kid, but never once for coeliac.

I don't think I have any symptoms resembling diabetes anymore, unless I'm glutened.

I discovered my coeliac disease after having breast cancer. The fatigue wouldn't go away. It just got worse. I would have the test. As someone has already said, it will be worse eating gluten again later. It's nothing after breast cancer. A bit of blood from your arm and then a camera. It didn't cure my fatigue but it did help with an awful lot of other things I had been suffering for years without realising. Good luck.

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