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Gluten Free Guerrillas

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Confused.......

Andersn1974 profile image
7 Replies

I am new to this forum and have read through the posts with interest. I first suspected I had an intolerance 20 years ago, but didn't do anything about it. It was a bit of a new fad then! I suffered with just feeling bloated and run down until eventually about 9 years ago I saw someone who diagnosed me as having a sensitivity to wheat, tea, coffee and chocolate. My entire diet blown out of the water in one fell swoop! I carefully followed an elimination diet and felt much better, then when reintroduced wheat and was violently sick. Like the worst food poisoning I had ever had. Over the subsequent years, I got lazy and slowly it crept back in.. but I have been mainly gluten free since. I do feel better when I am very careful, but still can feel very sluggish, bloated and headachy. However, I realised tonight that although I have cut out the obvious things like bread, pasta etc... I am not checking for hidden gluten. Wondering now if thats the problem- do I need to go totally GF??? Concerned about this though as not diagnosed coeliac.

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Andersn1974 profile image
Andersn1974
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7 Replies
Regalbirdy profile image
Regalbirdy

Hi Anderson,

I hope you have discussed this issue with your GP. If you haven't, you need to! Please do not try to go it alone on a GF diet without getting all the proper tests done first to rule out things like Coeliac. If you need to be tested for coeliac disease, then you will need to continue to eat gluten foods in reasonable quantities until this process is completed.

That said, if you are serious about wanting to relieve your symptoms fully (and all the tests are complete), then yes you do need to check for hidden gluten. Gluten turns up in the most surprising of places, such as stock cubes and certain brands of cola and so on.

Cross contamination of non-gluten containing foods can also be a real pain in the bum - literally! This can be due to foods being processed on the same line in the factory etc.

I hope this helps you a little. Btw, welcome!

pretender profile image
pretender

Hi andersn74, If you mean that you want to be "Free of Gluten" and not just GF then take a look at Commission Directive 2007/68/EC Annex IIIa also check out the European Food Safety Authority (EFSA) putting gluten in the search box. These will give you the basics on what is permitted/exempted regarding gluten. Hope it helps I am "Free of Gluten" (FOG)

upnabout profile image
upnabout

Hi Andersn1974,

As regalbirdy says, it's probably best to go through your GP if you can. However, the medical profession do not seem very good at diagnosing food issues in the UK. I had all the tests 10 years ago and they came back negative. I was diagnosed with IBS, but none of the medication helped. 3 years ago I discovered there was a family history of coeliacs and decided to go gluten free. Like you, I had tried gluten free and lactose free before but hadn't done it properly, so didn't see a benefit. Once I decided to make the change it really was a long haul and I didn't feel the benefit for several months. Partly that was because I think I became more sensitive to gluten - even a small amount set me back for a week or so. Gradually things became better. I made fewer mistakes and started to feel better. I also had rather bizarre reactions to stopping gluten, so for some of the time I actually felt worse.

The downside of the go-it-alone approach is that medical professionals often don't take it seriously. They like their labels and diagnoses. My GP refused me allergy tests 'because I had IBS'. Her only comment when I told her that since going gluten free my so-called IBS had improved immensely was 'you know you have to stop eating it for life'. I felt it was really condescending, as if I didn't know that. Of course it also challenged a previous diagnosis and they really don't like that.

The only way you will get a diagnosis of coeliacs is if you continue to eat gluten and have the biopsies. There are benefits to a diagnosis - prescriptions for g/f food and certain regular health checks. For me a diagnosis is not that important. I know that gluten makes me ill, so I don't eat it. A couple of weeks ago a GI specialist tried to convince me that I should eat gluten again prior to another endoscopy and colonoscopy. I asked him how a diagnosis would actually help me, considering I wasn't eating gluten anyway. His reply was that I would get 'help' with my diet - after 3 years I don't think I need that - and that they would monitor my health. I commented that they could do that anyway, with or without a diagnosis. I just got the impression that a diagnosis was for their benefit rather than mine!

Andersn1974 profile image
Andersn1974

Thanks for all the comments. I have had a number of colonoscopies in the past ( family history of bowel cancer). Nothing ever mentioned to suggest coeliac, but I don't know if they would have as that's not what they were looking for? I have seen my GP who just told me to eliminate gluten and see what happened. If I felt better- great. Part of the problem, by limiting my gluten intake, is that my symptoms now are not severe, and I have lived with them for so long it's hard to recognise what is 'normal', what is down to the food and what might reasonably be due to something else!

Louisejr profile image
Louisejr

I have had exactly the same issues, I had a negative result 10 years ago, I was told by the consultant that I was possibly intolerant to wheat or possibly had IBS. I consequently cut wheat out of my diet but not gluten. 10 years down the road, my health issues have compounded and I now have fatty liver disease. I have a new GP who thinks that my issues stems from gluten and wanted me to go back on a gluten diet to have another biopsy. I have however decided that this is not an option as I know I would be so ill, and it would greatly affect my day to day functioning. I have instead being doing a great deal of research on diet as I now have to eat foods which will hopefully reverse any damage that may have been done to my liver. I am now in my third week of following a mainly paleo diet and apart fom a few minor hiccups am feeling a lot better. The biggest difference has been my energy levels, I feel less sluggish and more alert.

So I may be un-diagnosed and to some extent going it alone but I do feel a whole lot better too.

All the best

Louise

reelingenious profile image
reelingenious

I've been wheat free for 15 years, had 2 neg biopsies for CD. Recently I have had boughts of weakness, aches and weight loss. Symptoms were particularly bad on Saturday, after my friday night out for meal. Thinking it was more wheat sensitivity and beer was the problem, so changed to wine............no change. A nurse friend suggested it might be yeast overgrowth after 3 courses of antibiotics and NSAI's. The GP wasn't interested in this theory but I cut out sugar, starches, alcohol, vinegar etc., and symptoms improved. If I lapse for any period of more than a week, I'm back to losing weight, aching joints, fatigue etc. I wonder how often food intolerances, IBS etc., are in fact a yeast problem. Considering how often we wreck our gut balance with antibiotics and NSAI's, often i would think, but GP's have a blind spot there as well!!

Andersn1974 profile image
Andersn1974

Funnily enough reelingenious, one of my colleagues found the same. She thought she was wheat intolerant but has through trial and error decided it is in fact yeast. The realm of food intolerance is a bit if a minefield!

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