Been told I am gluten intolerant afte... - Gluten Free Guerr...

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Been told I am gluten intolerant after 25 years of tolerating it just fine.

michael8888888888
michael8888888888

Hi,

So about 3 weeks ago I started to get a real bad pain in the guts. This went on for a week so I decided to see the doctor. He said I have symptoms of some type of intolerance so gave me a blood test. The test come back with 94 IgG and he said, yes you are gluten intolerant. I said how after 25 years of eating whatever I want can this be, his response was its just the way it is, it can happen pretty much.

So for the last 2 weeks I have been completely gluten free, hating it but doing it. 2 weeks I have been off gluten and I still have a terrible pain in the guts. I am starting to doubt that its the gluten.

In your experiences, how long will it take for my pain in the guts to go away and why after 25 years have I suddenly developed an intolerance to gluten?

this constant pain in the guts is doing my head in!

Thanks guys,

Michael

12 Replies
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Hi Michael, most of us were diagnosed after many years of stomach issues usually linked with anaemia. We are born with the genes that make us coeliac/gluten intolerant but what triggers it is usually a stomach bug and with coeliac ladies it is often after childbirth so it's stress on our bodies that seems to be the trigger.

Usually in the UK we are referred by our GP to a Gastro for an endoscopy when a sample of our villi is taken for biopsy so they can check to see if the villi is flattened by an immune response to a toxin and gluten triggers this response in coeliac.

What has triggered your reaction could be many things but it is typical in males to start having symptoms in the mid 20's.

Now as for your gut pains I would seek more advice on this and in the mean time I would go on a simple and bland diet so you avoid spices and highly refined processed foods and give your stomach a chance to settle down. Often when we are first diagnosed there is an intolerance to lactose as the enzyme that breaks down lactose is produced at the tips of our villi, so it is also worth bearing this in mind it is also very important to avoid ALL gluten at ALL times and make sure that you're not ingesting small amounts because of cross contamination and have your own spreads etc so you keep your gluten free food just that.

So I would urge you to see a dietician for follow up advice and remember that it gets easier with time and good luck.

Jerry

Thanks for the info and advice mate

Strange.

I was in my 40s when I developed symptoms, this was after a very bad episode of food poisoning in Egypt. I was told that something that stresses the body (not necessarily gut related - could just be a bad cold) triggers off the gene.

Jerry is right about cross contamination, my daughter in law once gave me a Yorkshire pudding, and when I said I couldn't eat it she just picked it off and I ate the meal - I was quite ill later because there must have been a few crumbs in the gravy (which she had made gluten free specially). I have a job stopping my husband from using his own knife in my butter too.

Also the lactose point - this happens to lots of people but its only temporary - so cheer up, its not all bad. Buy Lactofree milk, butter and cheese from the supermarket - if you can't find it, ask!

Thanks barb

Hi Michael, it's taken me 7, nearly 8 years for the side effects of eating Gluten to finally start to subside. It does take time & alot of patience, you just have to stick with it i'm afraid. I still have bad days every now & again, especially when i eaten something i shouldn't have. I Must admit though i've also had days in the past when i thought to myself i really can't be bothered with this diet anymore & eaten normal food, but in the end, it's really not worth the hassle or pain of being ill with a bad stomach and/or a migraine for 2 days & a rash all over my body (which is Dermatitis Herpetaformis) which not everyone who is Diagnose with Coeliac Disease is also diagnosed with, I just seem to be one of the rare & unlucky ones. So i really would recommend to you that you stick with it. It Will be worth it in the end. Good Luck

Ill be sticking with it because the pain in the guts that I did have when I wasnt sure what was going on was pretty much unbareable, its definitely relieved a little but still hanging around which is what is really frustrating me at the moment.

Noone has really given me a good estimate of when I can expect these symptoms to completely bugger off though ?

when I got my blood test, it came back with 94 IgG, the doctor said yes your gluten intolerant. Can anyone tell me what this number means exactly?

I copied this from coeliac.org.uk:

"IgA deficiency

Some people with coeliac disease do not make the usual coeliac disease antibodies. This is called IgA deficiency. When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient your GP will need to test you differently for the condition.

NICE has issued national guidance on recognising coeliac disease. They recommend that a different test for coeliac disease (an IgG tTGA and/or IgG EMA test) is used if a person is confirmed as having IgA deficiency."

They have a lot of information which is free to access and I've learned a lot about my condition through them. I've been told by my dietician that most symptoms will clear up within 6 months but some people can occasionally take longer. Hope things start to get better soon :o)

hi Michael, the short answer is everyone is different but usually it seems that people start to feel better in a couple of weeks but continue to improve over months or years.

However, you hadnt had symptoms for a lot of years, and this is very common - I didnt until about age 45, but my neurologist told me that I have probably always had the condition, it just takes time before it starts to show evidence of the damage that has always been happening. But it could be that yes you are gluten intolerant as evidenced by the IGg test - you shouldnt be producing antibodies to gluten, its the body's way of saying this isnt food and attacking your body to get rid of it. But your symptoms may not be due to gluten, you may still not be getting symptoms of the gluten intolerance, if you see what I mean, but the gut problem is something else. having antibodies doesnt necessarily mean that you will have gut symptoms, it could be for example your nervous system or brain but not your gut! Have you been tested for helicobacter pylori? have you been checked for gall bladder disease or kidney stones, or are you drinking a lot of alcohol and this is causing overacidity. In my experience the main stream NHS isnt great at figuring out this sort of symptom! Have a look on Dr Chris Kresser's site for info about this sort of condition.

In the meantime as you have got the gluten antibodies then you should stick to a gluten free diet so that you arent storing up problems for the future by continuing to damage your body and hopefully this will solve your gut problems over time, but if not at least you arent causing further damage and health problems. I agree with other posts about ensuring that you arent getting cross contamination as this is easily done and that you can be reacting to lactose but that this is usually temporary.

Also, make sure that the gluten free bread doesnt contain codex wheat starch - some do, especially Juvela! Also, oats may not be ok for you, some people are sensitive to oats even the gluten free ones because the protein in oats is similar to gluten. Dieticians often recommend leaving them out of your diet for about 6 months after going gluten free and then trying to introduce them.

In fact in general if you can i would try to keep gluten free breads and other refined products to a minimum at first.

Gill

My symptoms were triggered by a tummy bug when I was 23, I can clearly remember the day it started.

How are you getting on Michael? Have you joined the Coeliac Society? They publish a very useful booklet listing all the foods available and whether they're gluten free or not - also there are adverts from manufacturers for free samples of things like bread, pasta etc which are nice to have.

Thank god you had a good doctor! I have been suffering for 20 years and my doctor misdiagnosed me with IBS and put me on tablets to relief IBS which didn't work!

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