Newbie Here(My Story Not Diagnosed Yet)
Posted 18 November 2012 - 02:50 AM
I've had test done on my heart, liver, gallbladder and kidneys all have came back negative. In July I was diagnosed with a hiatal hernia. I also have high blood pressure. Too this point all the doctors think I'm crazy I believe and they dont know whats wrong with me. My doctor was convinced I have venous innsufficiency in my legs. I tried wrapping them and they get very very red and painful(legs). Everytime I drank beer my legs would swell up with pitting edema and I would be on the toilet all night from diarhea(not pleasant) to say the least. Well I did an internet search of "diarhea when drinking beer" and it lead to me to celiac disease. I've tried this self diagnosing a hundred times with no luck at all. I decided 4 days ago(thursday morning) to go on a starvation diet just as a test run. First day little to no difference, 2nd day swelling down 90% in my legs. Everytime without fail I drank beer my legs would swell so I did an internet search of safe alcohol to try with celiac disease. A few came up but I decided on rum friday night. I consumed 1 1/2 pints of rum friday night felt fine no bathroom trips at all. Wake up yesterday morning with a typical hangover but to my suprise the swelling is now completely gone after 2 years of having pitting edema in lower legs. I've lost about 13 pounds in 4 days and cannot believe this. I'm so looking forward to going to the doctor and hopefully finally getting this officially diagnosed! My question is should I purposely start eating this way again or should I just keep eating like I've been doing no gluten? I couldnt be happier if this turns out to be true as I've finally licked the alcohol bug that has been on my back for 13 years and perhaps have figured out whats wrong with me. My entire family has treated me as if I'm making this stuff up lol.
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Posted 18 November 2012 - 06:35 AM
Posted 18 November 2012 - 07:30 AM
Good luck and I hope you have a clear answer with testing. Do make sure they do a full celiac panel on you as well as a total IGA.
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
Posted 18 November 2012 - 09:32 AM
Sounds ilke you may have a gluten sensitivty (NCGI) or celiac disease. Please start eating gluten again (hate to say that) and keep with it until the testing is completed. The antibodies to gluten start decreasing when you are not eating it. So to get the best test accuracy you need to contniue eating gluten. Tell your doctor you want the full celiac disease test panel, not just a a couple tests. They often do just one or 2 tests and skip the rest of the antibodies types. You may only be positive on one of the antibodies types so if they don't test them all you may get a negative.
Reactions to gluten can include edema, (swelling) and may other things. You wieght loss is very possibly reduced swelling. I had swelling in my legs, ankles feet, face etc also. Also my legs and feet were cold. They warmed up when I got rid of the problem foods and the swelling went away. For me grapes cause swelling. Other foods do too tho, it is not just grapes
There are gluten reactions that can't be identified with the currently available test methods also. So it is a good idea to try the gluten-free diet for several months even if the tests are negative.
Some doctors may tell you that you have to be skinny to have celiac disease, but that is not always true. About 20% of people with celiac disease actully gain weight.
Congrats on finding the trigger for your illness!
Don't worry about finding foods to eat or alcohol. We have plenty of ideas on that. But it may help to lay off all alochol while you are healing. Liver enzymes are often elevated in untreated celiac disease and it would be helpful to give the liver a break while recovering. Alcohol is hard on the digestive system so less is better when you are trying to heal the gut. Dairy may cause you some problems at first too.
Non celiac wheat sensitivity article
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Posted 20 November 2012 - 12:47 AM
Posted 20 November 2012 - 12:53 AM
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