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Gab/Chat Room - To Discuss Anything BUT Celiac Disease / Gluten-Free Diet
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General Chat Unrelated to Celiac Disease - Discuss most things here EXCEPT Celiac Disease / Gluten-Free Diet. Keep it light and avoid controversial topics like global warming, gay marriage, gun control, euthanasia, speed limits on the Autobahn, prisoner torture, etc.

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    • That was my story Rhian and that of many others here no doubt. I spent years on each and every anti-depressant under the sun whilst telling doctors that I thought something was physically wrong. I found out for myself in the end, so don't be afraid to back your own judgment, ultimately you are the world's leading expert on yourself   But, whilst the diet change made a massive difference to my mood, it doesn't preclude me from suffering from depression. I think in some ways all those years have made it a part of me.  I chose to go back on gluten for testing and it wasn't particularly pleasant. At the end of it I had a negative biopsy, although such was my reaction that the GI told me to avoid gluten for life. So I'm NCGS, or coeliac if I'm in a restaurant and want to eat safely.  To me you're like I was, with two choices. Given what your body is telling you, just assume coeliac/NCGS and work even harder on nailing any contamination. See the tips above etc. Maybe try elimination diets with your Dietician's help to see if there's any other diet based intolerance - it does go with Coeliac - I have a problem with dairy for instance, with others its fodmaps. Finally look into gut healing diets - bone broths, probiotics etc. If your super sensitive it could be that you have leaky gut and you could help to repair that with some diet choices which may make you less sensitive.  Or you can go to the GP and try and nail down a bona fide diagnosis. That would mean a gluten challenge and you'd need support for the 8-12 weeks of blood testing and possible endoscopy. This board would be a good place for that if you choose to go down that route. A good GP or GI consultant makes all the difference there and maybe you could quietly check via colleagues or the web to find someone you can build a good relationship with.  I think either of them would be a rational approach and in both cases you'll be taking action to improve your situation, which in itself is a good thing.   
    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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