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Body Aches And Pains


magso

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magso Newbie

Hello, I am new to this forum and would appreciate any replies to my question please. For some time now i have various symptoms of Coeliac one of them being very bad body aches and pains. I have been to my GP numerous times and asked to be tested for Coeliac, I have had blood test done and she has just said no it


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YoloGx Rookie

Hello, I am new to this forum and would appreciate any replies to my question please. For some time now i have various symptoms of Coeliac one of them being very bad body aches and pains. I have been to my GP numerous times and asked to be tested for Coeliac, I have had blood test done and she has just said no it´s not that. I have seen a consultant re polyps in my gall bladder as I thought all the symptoms i am getting was related to that. He said no, the symptons are not related to the gall bladder problem and he wanted food intollerance tests done, the result came back and I have sensitivity to Rye, I also have an allergy to all types of grass and certain trees. As I have this intollerance and the allergies I really am wondering if it could be coeliac that is causing all of my problems. I really feel ill at times and the body aches are awful. I have tried cutting out certain foods from my diet, I do not eat any bread or biscuits or cakes and find that if I cut these out of my diet the aches do not seem so bad. Recently I have had chocolate and cake and the aches and pains are horrendous, along with other symptoms. I have to go back to see my consultant in January but thought I would see if I could get any advice from this forum as this really is starting to worry me now. Thank you in advance.

Welcome, you have come to the right place. Not everyone tests for celiac, however the docs often don't find it but it still exists, or people can have severe gluten sensitivity. There is a recent book out called Wheat Belly that indicates that many without celiac are still helped considerably by going off the wheat family. Aches and pains are often caused by undigested proteins that leak into the gut due to damaged villi, caused by the body attacking the intestines when one ingests gliadin from the wheat family which we shorten as "gluten".

More useful tests are those that test the stool by Entero Labs. Not all docs accept their findings, however many here on this forum swear by them. Blood tests are often far less accurate, and more invasive tests like endoscopies are just that, invasive and often inaccurate.

To figure out where you are at with this all more accurately, (i.e., if you have an auto immune condition) you need to go off all trace gluten. There are lists of unacceptable additives in the about section of this forum. You also need to either replace or stop using things like your old toaster, cutting boards, wooden anything. And take your iron pots and pans and put them in the self cleaning cycle of your oven for an hour. The same with the oven itself--it needs to go through this cycle to get out the old baked in gluten. If your oven does not have this feature, consider buying yourself a new toaster oven to replace it for now. Or just don't bake anything. You also have to look at your cosmetics and either stop using them or replace them with gluten free ones. Even lip balm is suspect. Petroleum jelly is a good replacement. Then there are the detergents, soaps, cleaners, shampoo, and laundry detergent. Be certain to thoroughly clean your kitchen. I even replaced the paper drawer liners.

I found by doing all this plus of course staying off eating gluten, my old aches and pains went away! I also became a lot healthier. I stopped getting colds and flu.

However I also soon discovered I had to be careful not to get cross contamination from gluten or I would get an often strong reaction, like diarrhea, intestinal upset, more aches and pains, confusion etc. This is part of the auto immune reaction. This would and does go away after one to three days but at first for me it often took far longer. If it happened often it would weaken me and set me up for possible colds and flu again. It was worth the trouble however to for the most part be far more healthy than I had been.

Meanwhile taking things like probiotics really helps repopulate the gut with healthier bacteria which in turn helps heal the intestinal flora. In my experience dandelion and marshmallow root go a long ways too towards healing the liver/gall bladder build up and intestinal and urinary tract toxicity and inflammation--which in turns helps out with lessening residual aches and pains. Nettle tea can also be of help to reduce the inflammation.

Good luck! There is much more to learn here. Be fearless in your questions and participation. We are all here to help each other. Also use the google aspect to help find out answers since it just may be someone else has asked the same questions before--which others here have helped them with. There are also good articles to peruse too as well as info on various gluten-free products.

magso Newbie

Welcome, you have come to the right place. Not everyone tests for celiac, however the docs often don't find it but it still exists, or people can have severe gluten sensitivity. There is a recent book out called Wheat Belly that indicates that many without celiac are still helped considerably by going off the wheat family. Aches and pains are often caused by undigested proteins that leak into the gut due to damaged villi, caused by the body attacking the intestines when one ingests gliadin from the wheat family which we shorten as "gluten".

More useful tests are those that test the stool by Entero Labs. Not all docs accept their findings, however many here on this forum swear by them. Blood tests are often far less accurate, and more invasive tests like endoscopies are just that, invasive and often inaccurate.

To figure out where you are at with this all more accurately, (i.e., if you have an auto immune condition) you need to go off all trace gluten. There are lists of unacceptable additives in the about section of this forum. You also need to either replace or stop using things like your old toaster, cutting boards, wooden anything. And take your iron pots and pans and put them in the self cleaning cycle of your oven for an hour. The same with the oven itself--it needs to go through this cycle to get out the old baked in gluten. If your oven does not have this feature, consider buying yourself a new toaster oven to replace it for now. Or just don't bake anything. You also have to look at your cosmetics and either stop using them or replace them with gluten free ones. Even lip balm is suspect. Petroleum jelly is a good replacement. Then there are the detergents, soaps, cleaners, shampoo, and laundry detergent. Be certain to thoroughly clean your kitchen. I even replaced the paper drawer liners.

I found by doing all this plus of course staying off eating gluten, my old aches and pains went away! I also became a lot healthier. I stopped getting colds and flu.

However I also soon discovered I had to be careful not to get cross contamination from gluten or I would get an often strong reaction, like diarrhea, intestinal upset, more aches and pains, confusion etc. This is part of the auto immune reaction. This would and does go away after one to three days but at first for me it often took far longer. If it happened often it would weaken me and set me up for possible colds and flu again. It was worth the trouble however to for the most part be far more healthy than I had been.

Meanwhile taking things like probiotics really helps repopulate the gut with healthier bacteria which in turn helps heal the intestinal flora. In my experience dandelion and marshmallow root go a long ways too towards healing the liver/gall bladder build up and intestinal and urinary tract toxicity and inflammation--which in turns helps out with lessening residual aches and pains. Nettle tea can also be of help to reduce the inflammation.

Good luck! There is much more to learn here. Be fearless in your questions and participation. We are all here to help each other. Also use the google aspect to help find out answers since it just may be someone else has asked the same questions before--which others here have helped them with. There are also good articles to peruse too as well as info on various gluten-free products.

Thank you so much for your reply. I did not reaise gluten was in so many products. I have only really cut out bread, cakes and biscuits as these were the foods I thought I should not be eating. My symptoms are numerous. Today for example I feel really ill, I have headches, bone and joint pain all over my body, everywhere from head to toe seems to ache. It

YoloGx Rookie

Thank you so much for your reply. I did not reaise gluten was in so many products. I have only really cut out bread, cakes and biscuits as these were the foods I thought I should not be eating. My symptoms are numerous. Today for example I feel really ill, I have headches, bone and joint pain all over my body, everywhere from head to toe seems to ache. It

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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