Coeliac Disease Symptoms. Advice needed.
Posted , 2 users are following.
Hi All
Wondering if any Coeliac sufferers could help me understand what happens when you get flare ups of your symptoms.
I've been diagnosed with IBS, however I have reason to believe I have an allergy or intolerance to Gluten, I'll explain why. Since becomming ill over a year and a half ago, I have made a point of cutting out Gluten. My reasoning for this was when about a year ago I ate a normal white crusty roll, within about 15 minutes my stomach / digestive system started going nuts, loads of churning, gurgling, bloating and associated pain. I then felt very ill for a few days after, until this eventually passed. I haven't touched Gluten since, and have to say that I do feel a bit ill most days, but not that bad that it'll stop me doing things. Anyway, I am currently on the fodmap diet at the advice of my dietician to try and find out whats causing me these problems. The fodmap was going well, and I was feeling quite good, so decided to eat one strawberry. This was a big deal for me as fruit has also proved to be a problem, and hadn't touched any for quite some time. I ate a strawberry that evening, which was only prepared by rinsing under a cold tap, and within about 10 minutes my stomach started going crazy, loads of churning, gurgling, bloating, burping that tasted of strawberries. I was feeling quite ill, so decided to go to bed. The next day the churning and gurgling was now around my belly button, I was feeling very ill, and would get bouts of feeling like I wanted to pass out. I felt light headed, disorientated, extremely nausious, and just generally very ill. My stools were also very dark, almost black, but they weren't tarry or smelly, just very dark in colour. This is unheard of for me as my stools are always lighter shades of brown, sometimes verging on being very pale. I researched why strawberries made me ill, and read someone's account of their problems with strawberries. This person was a coeliac sufferer and every time they ate strawberries it made them really ill. Then someone suggested trying strawberries that weren't grown on straw as Gluten from the straw could cross contaminate the strawberries. The person tried strawberries not grown on straw and did not have a reaction.
Its now 3 days since eating the strawberry and I am back to feeling normal, or as normal I can be considering I do have some digestive problems going on. I can't help but think I have an allergy / intolerance to Gluten, due to the strawberry and crusty roll incidents. I have, apparently, been tested for coeliac disease but this was a year and a half ago now, and way before the crusty roll and strawberry incidents.
I was hoping someone could give me some advice about living with coeliac disease, specifically how long it takes for reactions to occur if subjected to Gluten, and what types of symptoms they get with it. I'm trying hard to find answers myself as I'm so fed up with feeling groggy everyday. My dietician says I could be reacting to fruit sugars, but the 2 instances I have mentioned seem to have a link, which I believe to be Gluten. I also have to consider the pesticides that were used when growing the strawberries, have heard these can cause some people problems as well. Also, the fact that my symptoms started very soon after eating the strawberry and crusty roll suggests to me that this is more of an allergic reaction than an intolerance.
Any advice and info you can give me about coeliac disease would be greatly appreciated.
Many thanks in advance!
1 like, 4 replies
FA54321 paul75665
Posted
Your symptoms sound very much like typical coeliac ones, but like I said, everyone is different. To be sure you can either get tested properly (which involves an endoscopy - which by the way, would be a good idea so they can rule out other illnesses). Or not eat gluten at all and see how you progress. Did you know that some coeliacs can't eat oats? They have the same effect on the gut (i.e. Damage) as gluten/wheat. As for the strawberries, only by trying them again would you know for sure, but I would take the advice of your dietician with any elimination or re-introduction of foods.
paul75665 FA54321
Posted
I was tested for coeliac because of the problems a white crusty roll gave me, it was an almost immediate reaction to eating it, but from what I remember I was conscious of my diet at the time as well, so was on a very strict diet, whether it was totally gluten free is something I can't remember. From your comments, I don't have any problem eating gluten free oat products, porridge, flapjack, I'm ok with all that type of stuff. I did have an endoscopy last year, however I don't think they took any biopsies at the time, I think they were more interested in being as thorough as they could during my colonoscopy as I needed polyps removed. They said they couldn't find any problems with my stomach, duodenum was checked as well, could this have shown any issues? Also, didn't know if it was worth mentioning but at the advice of my dietician, I have been regularly taking multi vitamins daily. Could these have had any effect?
My dietician has said I need to have a blood test for coeliac again, and also she has said that I should try and get my GP to refer me for a formal skin prick test for allergies. Apparantly, she and a few of her collegues had discussed my situation and thought this was the best course of action right now, with a view of getting some biopsies. I don't fancy eating any gluten though, just in case it is the cause of my problems. I never felt so unwell as I did at the weekend, luckily I've been through it a few times before so knew what to expect, still no fun though.
Thanks again for taking the time to give me your comments, I do appreciate it.
FA54321 paul75665
Posted
If your dietician suggested having another blood test for coeliac disease, it's important to point out that you must eat gluten on a daily basis in order for it to show up, it's not just the endoscopy you need to be eating it for, as it's the same immune response that shows up in the blood work. so if you don't want to go back on to gluten, there's no point in having the blood test as it will show a negative response.
It's good that they are suggesting you have a skin prick test though, it might show something up you weren't expecting. The point you raised regarding the vitamins you are taking, have you checked that they are gluten and wheat free? You could be undoing all the good work by having vitamins that are not gluten free etc. It's surprising where gluten rears its ugly head. Also, do you double check the ingredients on all your food packets etc.? Also, to be truly gluten free, you need to make sure food is prepared separately and not cooked in the same oil (for example) as food that isn't gluten free. It's quite a thorough process, as anyone with coeliac disease will tell you that it only takes a very small amount of gluten in their diets to make them ill.
paul75665 FA54321
Posted
My dietician seems to think that even though I'm not consuming any gluten, the gluten antibody coeliac screen blood test should indicate if I have a problem with gluten, and then it will determine if I need a duodenal biopsy taken. Odd, because I thought as you in the fact that gluten has to be consumed for the test to be accurate, but my dietician is adamant that it will tell us if there is a problem.
From your comments I notice you have to be very thorough to avoid cross contamination of gluten as even traces can cause problems. Am I right in thinking that the more gluten coeliac sufferers are exposed to, the worse their symptoms become? Its not something we have thought much about at home, as I've been diagnosed with IBS, but your comment could suggest there are traces of gluten present everywhere in our kitchen, and perhaps the low level cross contamination could contribute to the constant mild nausea and abdominal pains I experience.
Finally, how could this have all come about? Up until the last year and a half I could eat and drink almost anything, now I can't seem to tolerate anything. I'm thinking that perhaps I have become sensitised to wheat and/or gluten. Continued exposure to things that our bodies don't agree with can lead to allergic reactions. I once worked in a factory making polyurethane, and there was I chemical there that was used daily. We were unaware, and not told of its health and safety data, and should have been using it with respiratory equipment, however we weren't given access to any, so used it normally. After years of use, I have now become allergic to it, if I enter the same room as an opened container of this stuff I will immediately react and come out in rashes and my face will puff up to the point where I can't see out of my eyes, or breathe from my nose, and this chemical was the reason for my endoscopy and colonoscopy, as it could cause cancer as well, looking back I think my scopes were more about cancer screening than anything. Anyway, I'm wondering if I've had too much exposure to wheat in my life. I've lived on farms most of my childhood, and was always keen to help out the old man on the farm, but this would mean plenty of straw work, as well as having fun making dens or hiding in and around the straw bales. I also worked in a cattle feed mill where the main ingredients in the feed were wheat and barley, and had to deal with articulated loads of wheat on a daily basis. My last job, and incidently where all these problems started, was working in a bakery, therefore plenty of wheat flour flying around the place. With that and a severe love of bread and baked foodstuffs before I got ill, perhaps I had too much in my life. Do you think this is possible?
Again, thank you so much for your help and comments. I will look into the coeliac blood test again, and make sure that its not going to be a totally futile effort having it done.