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Newbie Here(My Story Not Diagnosed Yet)


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#1 Jadeezra

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Posted 18 November 2012 - 02:50 AM

Hi all, I figured I'd come here and see what all you guys think. I'm a 33 year old male who's had mystery ailments for about 6 years. I've always been a moderate drinker all my life until this year. Drinking 12-15 beers 2-3 times a week. Well this year I stuck to my new years resolution and have only been what I would consider drunk 3 times! Thats the good news anyhow onto the bad. At 25 I was 225 and a little overweight, I have a very muscular build and at an earlier time I weighed 190 with a 5% body fat. Well of course as life has it I've piled on the weight slowly over the years gaining a little more every year. I'm now over 300! Ouch it pains me to say that. I've been to the emergency about 8 times in the last 2 years and have been told I have anxiety every time. I've been suffering from palpitaions, dizziness, bloated stomach, cant think at all(foggy), fungal infections and spells of chronic diarhea.

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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#2 Skysmom03

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Posted 18 November 2012 - 06:35 AM

Yes you must be Eating gluten for the blod test to be accurate. You need a full blood panel too. And if they tell you to do the endoscopy... You should do that as well.
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#3 ravenwoodglass

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Posted 18 November 2012 - 07:30 AM

Welcome to the board. Do keep eating gluten until all your testing is done but be aware that there are false negatives even when we are on a gluten diet. Celiac can also have an impact on our liver function so make sure you get that tested as well. Kudos to you for being able to decrease your drinking as much as you have. It would be a good idea to tone down or stop the drinking to give your body the best chance to heal. Gluten itself can be addictive which can give some folks a double whammy if beer is their beverage of choice.
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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"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)

#4 GFinDC

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Posted 18 November 2012 - 09:32 AM

Hi,

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
http://www.celiac.co...ists/Page1.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
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

#5 Jadeezra

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Posted 20 November 2012 - 12:47 AM

Okay thanks for the info guys, its going to be really hard to do that. I cant get into the doctor in 2 weeks. I'm certain without a doubt this is what I have. My legs after 5 days have zero swelling and I've lost 20 pounds. Yikes right? I was so bloated I was having back problems and couldnt even button my pants. Now after only 5 days my pants can easily be buttoned and my legs and thighs have no pitting edema. The pitting edema was very scary as I've had it for almost 2 years and everything on the internet said, liver, heart or kidneys. I'd passed all those test but it wasnt really satisfying knowing I had it. I could literally press 3/4" into both my shins last wed and it was gone in 2 days after starting this. 20 pounds seems like ALOT in 5 days sometimes I could just feel the fluid seeping under my skin in my legs running to my feet. This all makes perfect sense now why I felt so bad after pizza nights or pasta nights.
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#6 Jadeezra

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Posted 20 November 2012 - 12:53 AM

Oh and I just had a liver test done(bloodwork) along with a ultrasound in July so I know its good :) kidneys then also, heart tests just a week b4 I started this diet due to the palpitations and getting dizzy(actually went to the er as I almost passed out). Yesterday was the first day I havnt been dizzy in nearly 2 years also. I started taking some b12, vitamin d and magnesium as I've been on prilosec for 8 years! I forgot to mention I had been expierencing tingling in my fingers and feet which is still there but seems better. I've had what doctors thought was athletes feet on my one foot for 6 years could that be related? I've taken several prescriptions for it and nothing seems to clear it up. I'm still having palpitations but they also seem to have gotten a bit better. They're mostly when I'm sitting on a computer or laying down and I suspect its the edema in my gut pressing on my hernia.
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