How long does it take for you to feel... - Gluten Free Guerr...

Gluten Free Guerrillas

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How long does it take for you to feel the benefit of being GF free?

teresad profile image
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teresad profile image
teresad
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16 Replies

You can find that you feel quite a bit better within a few weeks. Some of the pain/ visits to the loo calm down but it does take up to a year for the body to really recover which makes sense when you think how long your body has been undergoing damage from gluten. That's why generally when you are newly diagnosed you are advised not to eat GF oats and also why some people have a problem with lactose. Often that settles down and then you can have them.

teresad profile image
teresad in reply to

Hi you said not to go for GF oats, I got Gluten free porridge is that ok, it is not pure oats?

Lynxcat profile image
Lynxcat in reply to teresad

They can never really guarantee oats being totally gluten free only up to 20ppm when they are 'gluten free' or 'pure' - I no longer risk having oats as 20ppm means they have gluten. If you can do your best to avoid all gluten then you should feel quite well reasonably quickly. This also means not eating Codex wheat starch, dextrose (wheat sugar), etc. It means you have to be eagle eyed and read the labels before you buy any food items - you cannot always rely on the words .. 'gluten free' or 'free from' as by law they are still, I believe, able to use those terms as long as they are guaranteeing not to have more than the legal 20ppm .. so those words do not necessarily always mean no gluten in this product or no wheat. When I was diagnosed - I thought no gluten meant no gluten. In Australia - they are much stricter and only allow up to 5ppm and in Canada have to currently state if products contain any form of wheat, etc.

Apricot profile image
Apricot in reply to Lynxcat

Dextrose can be made from other things besides wheat...ie potatoes or beet.

Depends on the producers.

Sorry, it doesnt make it any easier....just have to be more watchful..

Regards

in reply to teresad

Hi, when first diagnosed it's quite a good idea to have a really naturally GF diet as far as you can since I agree with others that it can aid your gut to heal more quickly. When I was first diagnosed there was only longlife bread, some crackers, flour and the odd 'weird' tasting biscuits to be bought from health shops, so a natural GF diet was easy. I disagree with some that say avoid all codex wheat starch,dextrose etc because we are all different and many people can tolerate up to 20ppm without any ill effects. The protein in oats (gluten free relates to the growing and processing) is similar to gluten which is why it can cause troubles. Foods that are listed in the Coeliac UK directory have all passed stringent checking and for most coeliacs will be fine eating any of them. I am a very sensitive coeliac and react to the slightest cross contamination and eat all but GF oats and am fine. If I was being diagnosed today, then I would limit my GF produced foods and go as natural as possible for the first 6 months at least to give my gut a rest. You can get a rice based porridge but I can't remember the make...also worth looking at the baby rice to make a porridge with..much cheaper.

weee profile image
weee

It depends, I felt I had more energy fairly quickly , the bloating took a week or so to resolve..

meanioni profile image
meanioni

9 years ago went on holiday for a week and went gluten free, felt better straight away and most issues had gone or subsided within a week.

If you are still feeling ill it may be that you have a secondary food-related intolerance or allergy (e.g. milk, yeast, soya) - keep a food diary and monitor your state of health along with what you are eating and drinking, you may find patterns forming.

Mia1057 profile image
Mia1057

My esperience was to go completely natural, fish, meat, veg, salads, rice and dairy if you can tolerate and only slowly introduce gf products such as bread, oats, cakes. Etc This way I found out that I can't tolerate any oats or codex wheat products. But everyone is different so hope that you can.

freelancer profile image
freelancer

The first time I went gluten free I found my permanent feeling of exhaustion lifted within a week. After a couple of months I started feeling worse again, which I think was mainly because my gut flora hadn't adjusted to my change in diet and which got better with probiotics. Then I went back onto gluten...

The second time wasn't so dramatic – I just slowly felt better as time passed – but about six months in there was a definite point as if a switch had been flicked and I felt as if I was back to my old self, which I hadn't felt for years.

Hi Teresad, I was diagnosed because I was very anaemic and for me it was around 10 weeks later that I had this sense of well being and knew that the anaemia had gone and that the diet was working for me. I also ate naturally gf foods prepared from scratch for maximum nutrition.

Many coeliac are lactose intolerant at first because the enzyme that breaks lactose down is produced at the tips of our villi. So one good option is Arla lactose free milk as this has lactate added which breaks down the lactose in the milk. I find Arla easier to digest and drink that all the time and it tastes like normal milk.

You ask about oats and coeliac are advised not to introduce oats in the first 6 months and then not to eat more than 50g of pure oats in 24 hours. The experts reckon that many coeliac appear to be able to tolerate small quantities of pure oats so even tho' I've been diagnosed 18 years I have never risked them. I would also avoid malted breakfast cereals listed in Coeliac UK food directory as they do contain up to 20ppm of gluten and have contains gluten on the allergy warning label. So to help your villi recover quickly I'd avoid these foods.

And good luck at least you're in good company on here and if it gets to you, you can sulk in the corner with Apricot...

Apricot profile image
Apricot in reply to

There is room on the sofa....have food magazines...and can lick the photos....

Its then gluten free, wheat free, egg free, celery free, taste free, no calories....OK??

I then have problems with colophony....(its in the finish on the paper...).

Apricot

Lynxcat profile image
Lynxcat in reply to Apricot

It's the way you lick it, Apricot! ;))

Lynxcat profile image
Lynxcat

Hi Teresa, There is ongoing research into the extent of damage that is being caused by even the minutest amounts of gluten that coeliacs are ingesting. There are many powerful organisations out there who are stating that it is safe as long as you are not exceeding 20ppm presumably in a day. They give no further guildelines other than 20ppm and not where the boundary for the 20ppm lie and how much of a product you can consume so that you do not exceed this. So this would mean exactly what? One slice of bread or a cracker or a bowl of cereal that contained malt? How would you know when you had exceeded the amount? How would you know what damage, if any, had occurred? Would the damage be to the villi as before or to another part of your body? In the US, which I might add, currently allows 200ppm they cover most of their sites by adding that it is considered unsafe for coeliacs to consume any gluten and if they do, then they should have yearly biopsies.

In the end, we will all choose to do what we feel is best for our own bodies I suppose.

Here is an extract from the US:

"The US Food & Drug Administration (FDA) has been developing regulations for the level of gluten in foods to be designated as “gluten-free” (Ref. 1), and opened the documents for public comment on August 3, 2011. The proposed “gluten-free” designation appears to be in sharp contrast to the FDA’s own Health Hazard Assessment (Ref. 2). Based on the scientific literature, we argue that the selection of a 20 ppm (parts per million) gluten limit does not create a sufficient margin of safety for people with a high degree of gluten-sensitivity. Instead, we propose a new, interim labeling of “Low-Gluten”."

This is on the following site - which you may like the link of:

ultimateglutenfree.com/2011...

meanioni profile image
meanioni

The concept of low gluten/gluten free with the EU levels is a nonsense really and its disappointing that Coeliac UK have nailed their colours to this mast.

The reality is that a coeliac will react to any gluten - the body's digestive processes will deal with all molecules it encounters and gluten at any level in a coeliacs gut will trigger a reaction. Now, the low level in gluten free foods may not give rise to the classic symptoms, but the body will still react in the same way and damage will still be caused to the gut.

Its crazy to think that our immune symptoms will go 19ppm - nope, not going to react.... :-)

sith_girl profile image
sith_girl

I've been gluten free for nearly 10 months, but feeling only slightly better, the only symptoms i had of been coeliac were constant tiredness due to iron deficency, and i still suffer with this only not quite as bad.(test results came back off the scale for gluten and the biopsy showed severe damage) there are still days when it takes every bit of will power just to get up and get dressed in the morning. I take multi vitamins and supplements but with my food i try to keep it as unprocessed as possible. and stay away from the "free from" part of the supermarket with all its over priced addatives and sugars, and preseratives. on the days that im really lethargic the only thing that will pick me up is fruit, melons, pineapple, strawberries, Does anyone else experience this? im still longing for the days with all my energy back and feeling as active as I used to be, hoping its not going to be too much longer, fed up of hearing "give it time".

LauraJB profile image
LauraJB in reply to sith_girl

Hi sith_girl

Only just seen this discussion, but I could have written word for word what you just have. I was diagnosed by a blood test this time last year due to severe iron deficiency, followed by a biopsy in January. Since January I have been gluten free (I had to eat gluten again for a month before the biopsy).. Exactly like you, I do not feel much different, and in fact I would say that I feel worse due to the exhaustion I feel all the time. My body feel SO heavy, my legs in particular.. Sometimes I feel that I can barely lift them to walk, it's making me quite depressed, will it ever get better?.

I went to see my doctor about this about a month ago and he had no answers, he did numerous blood tests for iron thyroid liver kidneys and more, and they all came back normal. He even tested my coeliac ttg level which had gone right down to 1.5 when it was 34 last time. He asked if I felt better on the gluten free,and I had to confess that apart from my excessive wind that has much improved actually I dont! In fact I never felt tired like this even when my blood count was severely low and I had anaemia. His answer to this was if you don't feel better then don't follow the gluten free diet. So now I really don't know what to do? If you get any more info re our problem i would be grateful to hear about it..

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