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Gluten Free Guerrillas
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Confused!

Hi, I've been reading and reading, searching and searching, but I still can't find the answers - well maybe there isn't an answer, but I'm going to ask anyway.

About 2 months ago I got a really unpleasant bitter taste in my mouth that won't go away. I had a gastroscopy and was told to take tablets (2x per day for 1 month then 1x per day for another 2 months) to reduce the acid in my stomach. After 3 weeks the taste is still there but is definitely improving.

Then yesterday I got the results from the hospital saying I have coeliac and need to follow a strict gluten-free diet for life.

But here's the thing, I don't have ANY other symptoms at all. I feel fine, I run/hike/cycle on a daily basis for several hours, I don't have any aches or pains, no skin problems, no lack of energy i.e. none of the symptoms listed on all the various websites I have read about coeliac.

As a teenager I was diagnosed with IBS, and have since learnt what I can and can't eat - trigger foods seem to be sweetcorn, watermelon, cauliflower and high fibre cereals/breads etc.

So I'm asking myself should I/do I really need to go to the extremes of being gluten-free, particularly as I live in Slovenia (I'm British) where the range of gluten-free products is fairly limited, not to mention expensive.

Look forward to receiving some feedback!

Thanks!

6 Replies
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Hi Slov

If you google “silent Coeliac” you will find that not everyone has the classic symptoms. People with IBS are frequently misdiagnosed coeliacs.

You do need to follow a strict gluten free diet to ensure that you do not cause long term damage to your body, such as osteoporosis.

It is possible to avoid the ready made expensive gluten-free foods, if you are able to cook from scratch. Have a look at the Healthy Eating site on HU for lots of gluten-free recipes.

Your list of foods to avoid suggest that you may need to look at a low Fodmaps diet too.

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There is such a thing as silent coeliac disease, which is where you get no symptoms. Just because you don't have symptoms though, it doesn't mean there isn't damage being done on the inside. The villi in your intestines are damaged, and as a result you won't be absorbing nutrients from your food properly. My OH was a silent coeliac before diagnosis, but when we found out he had it, we discovered he also had: b12 deficiency, anemia, vitamin D deficiency, and osteoporosis, all relating to his coeliac disease.

Continuing to eat gluten would eventually have resulted in infertility, cancer, cognitive impairment...

We don't often buy gluten free foods, we tend to eat foods that are naturally gluten free (vegetables, meat, potatoes), so it's worth seeing what you can do? You might find more products online or in health food shops?

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Besides being silent.. it could also just be that the symptoms you have are your normal. You might be sleeping a couple of extra without knowing it. But I would guess that some do get energized when tired to, like babies and people with adhd.

I never had pain in my stomach, except for periods. I thought periodcramps was my normal, until they lasted for two weeks.

Now I only have pain in my stomach if I eat gluten. It's as if my intestines was completely numb.

I actually never even had much pain in my stomach if I had norovirus or similar either. I thought people were just way too sensitive..

I glutened myself on purpose this other day.. just to see if I really was sensitive or crazy. (After being pretty good at staying away from all of it for 8 months.) The morning after I woke up with a feeling as if my back was gonna break in half, and as if I was to deliver a baby. Throwing up and sleeping for 16 hours, with headaches and so forth.

I used to only feel an uncomfortable feeling in my back from time to time, mostly as if my back became tired.. thought it was due to something else.

I also used to have eczema constantly, and hives once in a while.. and lots of zits in my face as an adult. Redish, dry and itchy skin. Most of it vanished after a couple of months, even though it was said to be permanent "learn to live with it" eczema.

Today my skin hurts badly, it feels as if my nose is gonna fall off as all the skin on my body. Itchy scalp. A couple of zits, even on my arm. And I realized that this used to be my normal, I just never payed it much attention coz I had it 24-7 for as long as I could remember.

What I'm trying to say is that I never even could have imagined how affected I was because of gluten before I accidentally glutened myself after approximately 6 weeks off. I thought I wasn't that sensitive at all, that's why I accidentally glutened myself with cornflakes. But I am, I cannot even eat some safe stuff.. it's fcn ridiculous. I got rashes after eating vitamins too boost my body, their dextrin was derived from barley it turned out. Excluding it made the rashes vanish in a couple of days.

It's easier to know what to stay away from when the rashes speak their mind so clearly.

It's scary how much gluten there is everywhere though, not all of can handle the up to 20ppm gluten limits.

I'm hoping to cope with tiny amounts better when my skin is completely healed.

Reply

Hi,

You sound like you are still in shock. I remember finding my results quite a surprise too! - In my head I was expecting some sort of anaemia type diagnosis. Instead the doctor told me that I’d tested positive for Coeliac Disease. Looking back knowing what I know now, I suspect I was undiagnosed Coeliac for over 30 years. Like you, I had learnt to accept and live with all the gut issues I had grown up with all through my formative years.

The only effective treatment for Coeliac Disease at this current time is a gluten-free diet. In answer to your question, yes –IT IS worth pursuing the gluten free lifestyle (I promise!). For a start, you may find that you won’t need those tablets for that funny bitter taste in your mouth anymore.

Fruit, vegetables, fish, meat, rice, nuts, pulses and beans are fairly universal and naturally gluten-free. If you wish to Keep costs down, these are your primary go to options. Just ensure that they haven’t been cross contaminated with any wheat, barley or rye during transportation (or processing) as much as you can. Also look online for ideas on how to make your own gluten-free bread. It will be different in taste and texture to the gluten breads, but perhaps worth the extra effort and the cost.

Take care of yourself.

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Hi there,

I have silent coeliac, I didn’t have the classic tummy problems although when in my teenage and early twenty’s I had IBS. I am in my 50s and only had a diagnosis 3 years ago. I had been anaemia for many years and had many investigations, took supplements but to no avail. My gp suggested coeliacs blood test and the rest is history. It’s definitely important to maintain a gf diet as there are many health issues which can affect you in many ways. My father died at age 39 of bowel cancer. My consultant has advised that it’s highly likely that he had coeliac disease. No one else in my family has it. Take care of your health.

Good luck

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Yes, please do go completely gluten free! It’s great that you aren’t experiencing symptoms now but symptoms can start at a wide range of ages. Definitely start treating the disease now instead of allowing more damage to accumulate.

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