Do I have Coeliacs, gluten intolerance or what?

15 years ago I was diagnosed with a non food related chronic condition. I have to take medication for that daily and a common side effect is diarrhoea. I'd had no GI issues before that.

10 years ago the situation suddenly changed, really from one week to the next, I had severe constipation. I ended up so swollen and bloated that I couldn't breathe and it caused an umbilical hernia.

I had all the usual tests - endoscopy, colonoscopy, blood tests, but they came up with nothing. I was eventually diagnosed with IBS, but none of the IBS drugs helped. By chance I discovered that anti-histamines gave some relief.

I was never convinced by the IBS diagnosis and felt it was some sort of reaction to food. I tried gluten-free then lactose-free and it seemed to help for a couple of weeks, but then the problems came back.

5 years ago I met my siblings for the first time (I was adopted). My half brother's daughter has Coeliacs and my half brother has since been diagnosed (in his 50s). My full sister has gluten issues.

Putting two and two together I thought I would try gluten-free again. You know, previously, I'd cut an awful lot out of my diet, but didn't read every label for all the hidden stuff.

I've tried to be gluten-free for the last 18 months. OK it's not easy and I have lapsed on occasions. The constipation and bloating is less severe mostly, but hasn't gone away entirely.

Have others had similar experiences?

18 Replies

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  • I have upnabout. It's taken me several years to sort it all out and I'm still learning. I have multiple food, drug and environmental allergies, intolerances and sensitivities. I also have the diarrhoea and constipation form of IBS. I'm gluten and lactose intollerant (and probably a Celiac although have declined the gluten challenge). At the end of eating gluten free for a year, I felt much better, but still had symptoms. It took me another 2 years of rotation and elimination diets and allergy testing before I was able to nail down all the foods I can safely eat. I focus on what I can eat because the other list is just too long. Finally, I have more energy and less problems than ever before. Stress can still trigger an IBS flare, but then it also triggers fibromyalgia and arthritis flares as well. Weather can also be a problem. Don't give up ...just keep looking for foods that your digestive tract won't tolerate. It takes time and persitence, but it does pay off. Get yourself a good team of supportive physicians to guide you through the process... my team is amazing and I don't know what I would have done without them!

  • I'm unsure about the gluten challenge test - I couldn't face being so ill again just for a diagnosis. Before I discovered that anti-histamines helped I was practically suicidal - even took up smoking again - despite what they say it does make you go to the toilet! I guess the only benefit would be the free prescriptions and being taken seriously.

    Because I have other medical conditions it's very difficult to get to the bottom of what is causing what, whether it is illness or side effects of the medications. I've been on so many and had so many side effects - both physical and mental - and it's always difficult to convince the doctors. Even once you stop taking them, you don't know what long term damage has been done.

    The last 5 years I have had difficulty walking. My calf muscles suddenly go really hard and it's so painful that I have to stop and wait 15 mins till it eases off. It's not always, but often I cannot get to the shop or bus stop. It's meant that I only really go out if I have to. Had various tests but they don't know what it is. The only clue so far is that it is not circulatory. Could be related to my genetically abnormal liver, but so far it's inconclusive. I was rather hoping that it might be related to food, but haven't managed to find a link.

  • Do you take statins as a side effeect of some can be muscle cramps and weakness .

  • Not any longer - I took them a few years ago and they had no effect on my cholesterol. The endocrinologist said it was genetic. There's some sort of lipid disorder in the family. I now take ezetimibe and fenofibrate. My cholesterol was not that high and I mostly take them because my hospital specialist wanted me to. They brought my cholesterol down a bit and they've stopped nagging me!

    Funnily enough it was the endocrinologist who asked me if I had leg pains - not because of the statins but because of my abnormal liver tests.

  • My first comment would be about the blood tests,,,,IgA was my first and can be positive or negative. A positive leads to an Endoscopy/biopsies and investigation of the Duodenum. A DNA test for HLA-DQ2 & HLA-DQ8 or both are markers for CD. The use of anti-histamines it is known that coeliac's secrete more histamine because of the elevated number of mast cells. But the IgA and anti-histamines are also markers for an allergy.

    My personal advice is to start with a food diary writing down what you ingest, foods, drinks and medications and list any symptoms over a short period of time this might through elimination give some indication as to causation. Like yourself I have half relatives as well as natural with gluten issues but mine also through elimination/research found an allergy as well.

  • Thanks for your replies.

    I've already had two blood tests for coeliacs which were negative (I don't know the details of what they actually tested for). I'm not sure if they did a biopsy for coeliacs when I had the colonoscopy/endoscopy - I think they were mainly looking for bowel cancer or crohns disease. When they found nothing they diagnosed IBS. I disagreed at the time, but once they do that, they pretty much refuse to entertain that it might be anything else.

    I did a food diary a few years ago for the hospital dietician. He decided it wasn't food related (I was so swollen and constipated at the time that even water made it worse).

    A year ago I saw another hospital dietician. She was a fan of the FODMAP restriction diet. As I had only been seriously gluten free for two months, and had seen some improvement, I decided not to do it at that point. I was already struggling finding things to eat and hardly ate any of the restricted things anyway. Even so I started to avoid the things on the list and eventually ended up eating just grilled meat and mash almost every day! Not good.

    Your advice is good though. I think I must start a food diary again. Now that my bloating is not so severe I might be able to detect more. I'm fairly convinced that gluten was causing me the worst reaction - really within 30 mins of eating my gut was hard - like really hard - it was like I had the creature from Alien inside me :-) Now I still get swelling a lot but it is different, uncomfortable but not painful and not nearly as hard. I also seem to have a bit more energy than I have done for years. I'm trying to cook more and am cleaning and clearing out junk. I haven't been up to it for so long - all I wanted to do was sleep!

  • A good way of testing is to go gluten free for six weeks and then eat a bowl of pasta, if this makes you ill it is a good indication that you are Gluten intolerant. Also you can be Gluten Free (just a part of wheat) or Gluten and Wheat Free which then includes Barley, Rye, Malt etc

  • A reaction after 30 minutes sounds more allergy than CD. My symptoms are next morning and neighbours watch my stomach blow up and decrease up to 6". I tried the FODMAPS and not for me so am now left with Atrial Fibrilation, COPD CD related, taking 6 piriton per day to keep the allergy in check but does not always work. My BP goes well up the scale 210/108 Allergy related. Went out yesterday and had a carvery all seperate utensils, nothing that went near gluten but stomach not good today.......high histamine levels does react like CD. Luckily no Urticaria as yet.

    According to some doctors Coeliacs only have to read labels and chicken chips and peas every day will not harm you.........needless to say a complaint was made and last heard that doctor retired.

  • Oh poor you. Reading your story takes me back to 25 years ago when I got so ill I had to sit to make dinner, or hang out washing, and crawl up the stairs. i would fall asleep in the car so driving more than 10 miles was a challenge.....no doctor took me seriuosly, then we moved and my new gp knew of an NHS trial at a food clinic...I was off! I had at least 30 seperate food or additives that i was allergic to. In those days only thing was food diary an elimination. However after 4 days on a very restrictive diet i felt better, and after 7 i jogged across half our village and was on cloud nine!

    Coealic developed later and 8 can now tolerate some foods I didn't use to ..citrus, coffee, vinegar, but mostly i still have a resricted diet, no medication.

    The point is...its a long haul, but i now have 3 lovely healthy children and am fit. Apart from usual problems trying to eat out, and the need for a fridge full of fresh veg its not an issue. STICK WITH IT do a food diary...hard to see wood for trees....but hopefully get you started. After such a bad time it will take years for your insides to heal, but they will......GOOD LUCK! And see someone privately, the nhs have no time ....or money

  • My heart goes out to you reading your story. It must be totally miserable to be in so much pain and discomfort and to feel that you are not being fully helped or understood by the medical profession.

    I can only reiterate what others have said. Do persevere with the gluten-free diet and keep tabs on what you are eating and what reactions occur. Do lots of fastidious label reading if you're buying anything processed, and try to cook as much from scratch as possible, using simple, basic ingredients.

    Incidentally, like you I find I get almost instant reactions (severe pain and bloating) when I eat gluten, so bear in mind that people respond very individually to gluten - and indeed to other foodstuffs. You are the only one who really understands what is going on with you, and the only one who is truly able to get you back to full health.

    I do hope things improve for you soon.

  • The "Gluten Free diet" is there for those who can tolerate it but is considered by the medical profession as the treatment for coeliacs. The medical profession do not understand that there are a minority of coeliacs who cannot tolerate even these small amouts or the permitted ingrients from gluten origins. The term gluten free is misleading and refers to a level of 20ppm per kilo per finsihed products, Very Low Gluten refers to levels of gluten up to 100ppm per kilo per finished product.

    However no considerations are in place for any individuals level of sensitivity, once diagnosed the patient then finds their own sensitivity level by trial and error.

    My own diet is TOTALLY FREE OF GLUTEN.

    Coeliac Disease is not a Type I reaction but a Type 2. Anyone who reacts very quickly to an allergen should continue asking Why?

  • Hi UpanAbout, My heart goes out to you, its a really confusing and painful journey! Here's a few things I'd like to pass on that have helped me along the way thus far.

    Along with an elimination diet, look at what else could be affecting your immune system and what you can do to calm it beside anti-histamines. Has your doctor run thyroid tests? If you look up how to carry out the basal temperature thyroid test yourself, you might get an idea if that is implicated. Thyroid and coeliac disease are both auto-immune illnesses and are known to co-exist frequently. Thyroid disease can also cause gastro and aching joint symptoms.

    The fact many family members have gluten issues as well as your symptoms is certainly pointing towards gluten as a big culprit. I have wheat/gluten intolerance, related to my grass allergy, and in this case you can have bad reactions to other plants in the grass family, including things like corn, which have their own form of gluten. Soya can also prove an irritant in IBS I found.

    The aches and pains in your legs are very familiar to me, and mine only eased fully when my immune system began to heal after being gluten free for a while. Other good "helpers" I found were transdermal magnesium (great for banishing joint pain!), sublingual vitamin D and regular (every 6 hours) doses of Vitamin C (does the same thing as anti-histamine by calming the immune system, but also strengthens it). If your system is irritated you may not be absorbing vitamins/medication properly which is worth bearing in mind too.

    Have you eliminated all the lesser known sources of gluten from your diet, i.e. wheat and barley additives in processed foods and been careful about cross-contamination (wheat crumbs in the butter?) It's amazing what even a tiny regular amount can do when your system is still inflamed.

    I find rice and buckwheat based wheat substitutes the easiest to digest and you can get pasta and breakfast cereal with them as sole ingredients. Apparently, rice has the smallest amount of gluten-like protein and buckwheat is a member of the rhubarb family, which probably explains why they are more suitable.

    My experience of the medical fraternity in the UK has shown that they are still lacking greatly in knowledge about allergy/intolerance and diet. The best way back to health for me has been via self-education and support groups like this.

    Good luck with it all and please let us know how you get on.

  • Thanks for so much useful advice! I'll try to answer in one post.

    Before taking anti-histamines the constipation was pretty permanent - to the extent that shoving a hose up my bum was the only way to clear it (sorry!). I was so constipated and swollen that I went to A&E and begged them to give me the laxatives they give you before a colonoscopy (anyone who's taken them knows that they DO work) - I would even have welcomed surgery - . It was so painful that I could feel my abdomen being ripped apart. I can only imagine it's what pregnancy is like.

    After taking anti-histamines it wasn't that severe and I'd rather go that route than laxatives which can be damaging long-term. Even so, my 'output' varied a lot, particularly in colour. The options seemed to be black/green/fishy smelling or yellow, never anything approaching normal.

    Since going gluten free the colour has mostly returned to normal. Now when I react and swell it's usually the normal colour, but longer and thinner - a bit like a pasta machine :-) When I have knowingly eaten a lot of gluten (pita in a kebab or burger in a bun) it's back to black or yellow. In fact the last pita I ate come out so white I wondered if it has passed through untouched! Sorry to be so graphic, but how else can I explain what happens?

    I realise that even gluten free products may contain some gluten (thank you pretender). Perhaps I am particularly sensitive at this time. I certainly seem to react more, although not so extremely, but perhaps to lower levels.

    As I live on my own cross contamination is not such an issue. I haven't knowingly bought gluten containing products in over a year and have thrown out any suspect stuff. Yesterday I revived the breadmaker - cleaned it etc and made a gluten free loaf a la mrs crimble. It actually turned out quite well. Even so I reacted, could have been the prosciutto, could have been the eggs. I thought maybe it was the toaster, so I cleaned it thoroughly.

    Last week I had a bit of a gluten free shop - beans, pulses, flours. We will see! It's not like I can't cook.

    In some ways I am quite lucky with the medical profession. My hospital consultant is more than willing to refer me to other specialists. However there is a major disconnect between hospitals and GPs. My GP has, for me, mostly become a prescribing service. Over the years, the things I was prescribed by the hospital have been forced onto my GP.

    The most recent squabble was vitamin supplements. Hospital had prescribed them as a preventative measure. NHS rules changed and it had to be prescribed by GPs. GP refused saying it was a waste of money. One year later I had Vit D deficiency and anaemia. Hospital sent letter to GP. GP suddenly said 'you have a reason to take them now'. Well that was the whole point of taking them in the first place!

    Sorry I am have rambled!

  • Upnabout, don't worry about the graphic, it's really good to be able to talk about the stuff that actually goes on - let's face it, people don't talk about it!

    The consultant I saw asked how many times I went a day, put on the spot I said 'three' and he replies 'oh, that's fine, 3 is within tolerance' - blow me, what secret guidlines do they have in place on what's deemed as 'normal'.

    Having been asked this question I can now say generally between 1 and 6 times - most days it's once or twice but there's probably a once a month day that I don't go and probably about once a week that I go at least 5 times!!! I think if I'd given this waffly response then it would have further cemented the IBS opinion!

    I have thought about keeping a diary but I'm suspicious it would take a huge amount of time and might take years to really establish anything - I can eat an identical meal 2 weeks in a row with hugely different results!

    Ramble away :)

  • You made me giggle!

    I've never counted the number of times I go. It's so unpredictable. I've learnt to err on the side of caution. If I get the slightest urge, even if it might be wind, I go to the toilet. Just too many accidents in the past! It can be normal one time, then diarrhoea 30 mins later, then constipation 30 mins after that. I'm in the bathroom at least once an hour, even if it turns out unnecessary.

    The IBS diagnosis is very annoying. When things have been really bad I've got a patrionising 'well IBS can be very debilitating'. When I asked my GP for allergy tests (on several occasions) she refused to refer me insisting that I had IBS, and allergy tests would be a waste of money, even though I have a history of allergies, eczema and asthma.

    I did once think of collecting all my various 'outputs' over a couple of weeks and taking them to my GP for her opinion :-)

    I don't see my GP very often, only really for an annual review - kind of boycotted the surgery for years - 15 years ago I was really ill - had been to the surgery 3 times in 2 weeks and just got worse. Finally I could barely move - asked the GP (a previous one) to visit me at home - she refused. I spent 24 hours literally crawling around the flat to pack a bag and then called an ambulance. I nearly didn't make it and was in hospital for 2 months.

    Since then I have been seeing my hospital specialist every 3 months. They didn't expect me to survive, so I was something of a medical miracle. Because of that they've used me for research a lot. It's really been a long haul, but they know much more about my health than my GP. In fact I know more about my health than my GP. Unfortunately the hospital has generally assumed my GI problems were caused by the often trial medications I have taken over the years. I don't expect GPs to be specialists, but I have sometimes had to even spell things for them they'd never heard of!

    Keeping a food diary isn't that difficult really. Last time I used Excel - just columns for date, time, what goes in and what comes out. As I was mostly at home I just kept it open all the time. When I was out I just used my phone for notes. It's probably easier now that smartphones and tablets do much more. Maybe I should write an app :-)

  • I'm glad I made you giggle, you made me giggle too but likewise you made my jaw-drop, you have certainly been thru the wars!

    Ha ha, an app would be handy actually. I spend a great deal of time trying not to make my husband lose the plot. On the one hand he is really supportive and great at giving the quack's an ear-bashing when I struggle. On the other hand I know he wants to shout and swear when I ask to stop at the service station on the way to work!

    I totally get it, as a grown woman I have literally only confided in a small handful of people, the full extent of it all. My fave manouvre is to go to the loo, give up... then change my mind and rush back in when I've barely dried my hands. It does literally change day to day and hour to hour, it drives me bonkers!

  • I've found that most people don't want to hear the details - I usually leave it at them knowing I swell up and react to things!

    Since we spoke I managed to find a free android app. It's called Allergy Journal. It's not perfect, because you can't export all the data, but it does allow you to look at foods and reactions within various time frames.

    3 years ago I was in a bit of a rut. Never went anywhere because I needed to be by a toilet. Also have 2 house cats and it's always difficult finding catsitters. They get depressed when I go away and are very clingy for weeks when I get back.

    I had a brainwave - how do you combine a toilet with a way of taking the cats with you? A campervan! Now I can go places at the drop of a hat. I can stop anywhere when I need the toilet and can visit people without staying with them. The cats soon got used to it - it's just a mobile living room to them with lots of windows to look out. Unfortunately, I was on a tight budget, so the van is 25 years old and has more health problems than I do!

  • Thought I would add an update.

    Yesterday went to see my hospital specialist (non food related). Ended up seeing a new doctor (it's a teaching hospital, it quite often happens). When it came to discussing my ongoing gut issues I was pleased that my usual specialist had already told the new doctor about it all! He's the specialist who sent me for all the tests originally.

    I'd already decided to ask him to check what exactly they had looked for 10 years ago with the various tests and biopsies. It turns out they did a biopsy for coeliacs, but it came back negative. At the time they were mainly looking for bowel cancer.

    Because I have seen such an improvement by going gluten free he's decided to send me to the GI specialist again. It's the same one who diagnosed me with IBS all those years ago. Will have to see if he will change his mind :-)

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