Gluten Free Guerrillas
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4 years of suffering, possible gluten intolerance

Hello,

I just wanted to share my story and see if anyone could give a little advice please.

In 2014 I began getting pains in my lower left abdomen sometimes radiating down my left testicle and leg. I went to my GP and asked him if he thought I might have a hernia or something as I’ve always been a keen gym goer and lift weights. He said he couldnt feel one and referred me for an ultrasound. At the ultrasound the radiologist said everything looked fine but my right testicle looked like it had a mass. I was referred to a urologist who told me I had testicular cancer in the right testicle and it needed to be removed asap and that was also the cause of my pain. So I had the testicle removed but 2 weeks later I was informed that they could find no cancer in the testicle. Unfortunately not only did I have to come to terms with losing a testicle unnecessarily but my pain in the left side was increasing.

Over the past 4 years I’ve had every test possible (many paid for privately running into thousands) and 2 exploratory surgeries to see whats causing my pain and stomach cramps and now also horrible constipation with diarrhoea almost every day. In January this year my GP suggested I get tested for coeliac disease as I had a particularly painful day after going for a big Italian meal one night. I had my bloodtest and immediately went gluten free and within days I felt 75% better. The pain was still there but I could finally have a normal bowel movement. The bloodtest came back negative for coeliac which I was disappointed with since I was and still am desperate for a diagnosis! I went to see a nutritionist who recommended the more reliable cyrex array test which also came back negative for coeliac disease but did flag up some other intolerances to wheat and gluten. She told me the test results mean I need to avoid gluten for the rest of my life. So after 3 months of being gluten free I finally feel 95% better! Unfortunately out of nowhere, all my problems returned. I’ve been back to square one again for around a week now and cant remember consuming any gluten other than possibly a sausage at a wedding or maybe some chips? Either way this week has made me question again the possibility that there’s something else going on. Surely consuming such a small amount of gluten wouldn’t give me a whole week of symptoms. Or maybe I ate more of it elsewhere and didn’t realise? I have generally been really disciplined with my diet so I’m not too sure what to do anymore. My left abdomen is cramping up so much that it makes my testicle retract so that it’s extremely tight and painful, but I can tell the pain is coming from my abdomen and not my testicle so it must be intestinal related?? Anyway apologies for the long post, any advice would be really appreciated.

Thanks

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It is possible for you to get a false negative on the coeliac blood test, and still have coeliac disease. But unfortunately a really small amount of gluten can really knock you off for a few days.

A few things I'd suggest: give it a few more days to see whether your symptoms settle, in which case I'd guess it was a glutening (also assess whether you've been eating anything else new lately). If not, go back to your GP.

Consider cutting out other food groups for a little while - many with gluten issues also have problems with dairy. If you're up for the challenge, the Whole 30 challenge is worth looking into.

Keep a food diary for a few days, and note down symptoms at the same time. If you get the same symptoms again,look at what you've eaten in the prior 3 days, and see if you have the same symptoms when you eat them again I'm future.

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Hi Paulp85,

It could be that you are sensitive to some other component of wheat, not specifically gluten. I am wheat intolerant and react to any wheat derived ingredient, even in minute quantities, but I am fine with rye, barley, spelt which all contain gluten. Sausages and chips can be tricky because many sausages contain wheat based rusk and many chips have a seasoning coating which also contains wheat. This also applies to potato crisps in UK. Unless you can check the label, it is best to avoid all these.

There are many wheat derived ingredients such as maltodextrin, often derived from wheat, but not labelled as such, which are common in many manufactured products. There is a useful list of these in a previous post on this forum which you could search for. Also look out for Codex wheat starch, which is wheat starch with most of the gluten removed (to less than 20 ppm), the legal limit for labelling something gluten free. Many gluten free bread brands use this, so take care with that. Worth noting too that that a low level of gluten is cumulative so best avoided for both coeliacs and wheat intolerant people. Non-gluten wheat sensitivity is a thing now, despite Coeliac UK dismissing it on their website, at least in part, as 'wheat aversion' which I do find irritating. I hope you can find your way through this.

BW

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Hi Babsy,

Many thanks for your reply. Yeah that could be a possibility. I did get the cyrex array bloodtest done and wheatgerm allutinin IGG came in quite high along with the gluten transglutaminase 3 IGG and 6 IGG which were also very high. According to the nutritionist the ones that identify coeliac fell well within the normal range. You could well be right because I do eat chips regularly, even mcdonalds chips sometimes if someone offers me some. Maybe I need to be a lot more strict with my wheat intake as well then. I’m going to try and get referred to a gastroenterologist because at the moment I’m under the care of a urologist but I really dont think this is a urological problem. The pain just radiates into that area and because I only have one testicle now its hard to tell whats normal down there even 4 years later.

Many thanks

Paul

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Sounds like you have a had a good range of tests. Good to have eliminated coeliac, but certainly seems to be something wheat related. It is quite surprising where wheat lurks. You can get gluten free / wheat free chips, but have to look for them. If you eat out, you can ask for the allergen menu, which catering establishments are obliged to have by law now. But they vary greatly and some are better than others.

Seeing a gastro is a good idea. In an ideal world, they would look at at the whole person, not just a series of seemingly unconnected symptoms.

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i'm sorry you had to go through surgery for a problem that possibly wasn't even there.

If you're sensitive to gluten, chips really are a no no.

they're either fried in the same oil as everything else, therefore contaminated, or dusted in a gluten product to make them crisp up.

I mostly cook from fresh at home and avoid using so called GF substitutes but when you're out and about it's nice to pick up a snack.

my local chippie will do me chips in a dedicated fryer but without the malt vinegar and all that battery flavour they're just not the same.

i go into McD at my local services and their version of a gluten free meal is double cheeseburger (2 burgers and a slice or 2 of cheese, no bun of course and i decline the piece of gerkin because the vinegar is inclined to irritate my already sensitive gut, can just about manage the squirt of ketchup) put that between a Tesco 'white GF bagel' (kept in the car or my handbag at all times for emergencies) and you're away.

hope things settle down for you soon

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great reply with loads of useful info, wish i'd seen this when my problems came to light

thankyou BabsyWabsy

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Thank you :-)

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Jesus ! This could b my story but im a women.

About two years ago started to get pains in left lower side, gp thought endo, sent to scan they found a mass, had laparoscopy and nothing!

Had a colonoscopy to to make sure nothing wrong in that region again nothing.

I started to get stomach ache all the time and i also lost a stone in a month!

I went to see a allergist and i was no ceoliac but i was gluten intolerant.

I stopped eating gluten and within 2 weeks felt alot better but i was still in discomfort. (I also chose to go dairy free as i felt that never liked me much either.)

It was suggesteted that unfortunatley i had two sep probs and mayb see a osteopath which i did and as a avid gym goer, runner and generally to active 44 year old my hips were not happy or my sciatic mass at back. Which can give u ibs pain and sciatic pain and pain in groin.

I have since got 90% better !

So mayb go see a osteo!

Also once u give up gluten and dairy u will never go back, my body has never been happier without all that bad stuff in it

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Hi Lulububs,

Thankyou so much for your reply. I’ve also given up dairy which has been quite easy to do since my fiancé is vegan and we always use rice milk now and tend to avoid products with milk in. I do think I’m a bit lactose intolerant as well because the last time I had icecream I was in agony the next day. I will look into seeing an osteopath, I’ve seen pretty much every other profession about this problem and so far the only thing that helps is being gluten free but I’m definitely willing to try other things as well so thanks again for your reply. Really helpful.

Paul

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It gets to stage where ur try just about anything to have some pain free time and i have spent thousands over last two years trying to get it.

I also take gluten/ dairy free probiotics , digestive-enzymes and peppermint capsules before eat( about half hour before) that all helps to keep a healthy gut bacteria.

Ostoes are fantatsic as if u get a good one not only will they check lower back they can also deal with digestive issue so mayb explain u have ibs but u not sure if it not lower back pain to?

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Our stories are very similar and I bet there’s so many others out there in the same situation. I’ve also spent a lot of money on private procedures and consultations. I had an exploratory surgery a couple of years ago which set me back around £5k because they suspected a hernia and I was desperate for answers. I’ve also had various scans and tests and it can easily run into thousands when you go it alone without the NHS. The NHS have let me down severely, not just with the testicular cancer misdiagnosis but also discharging me and basically fobbing me off for years while I was in a desperate situation. I will look into seeing an osteopath and see if my GP will refer me to a gastroenterologist. I think those are my best options at the moment.

Thanks again,

Paul

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I saw a gastro and she was crap( excuse language) i went to a actual allergist and he was fab. Explainedall about the gut and bad flora and when ur ill or stressed bad bacteria takes over gut and u need to put good bacteria into it. Stop poisoning body with dairy and gluten it hard to digest also red meat, stick to chicken and turkey. I learnt alot from him. More then anyone.

I need a mri on lower back as the osteo think i have a herniated disc which is causing all left pain and groin pain but they wont give me one as TO EXPENSIVE!!!

Unbelieveable

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Food contamination after being gluten free for some time can cause quite severe symptoms... even with just a trace. When you eat over 20ppm you are at risk of recurring symptoms. I would have a very close look at what you have been eating... check labels on everything watching out for all packets that are not labelled gluten free. Look out for vinegar, soy sauce, glucose syrup, modified starch etc. I hope you get to the bottom of it xx

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Have you ever being tested to see if you are yeast intolerant ?

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Hi Louise,

No I haven’t been tested for that. Do you know how I would go about getting that done? And is it worth getting tested for any other intolerances? I did mention it to my GP in the past but he said to me they dont do intolerance testing. He said the only way to test is by eliminating certain food from your diet.

Many thanks,

Paul

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