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Negative Blood Test But A Lot Of Symptoms

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I am brand new and I'm so thankful to have found this site. Forgive me if my post shows up twice. I had it all typed once and then it disappeared! I am welcome to any comments or suggestions. Please help! Here is my story...

I'm 38 years old and for 2 years now I have been dealing with an array of problems. I am always very tired and have zero energy. It got so bad that my employer laid me off a year ago so I could try to get control of myself. I am back to work now but only working about 30 hours a week. Most days I have to nap as soon as I get home because I'm so exhausted. For the past year I have been dealing with a lot of stomach issues. The main one being abdominal bloating (I once had a nurse ask me when I was due because she thought I was six months pregnant!) along with abdominal pain, diarrhea, constipation etc. I have been diagnosed with fibromyalgia, CFS, and hypothyroidism. I had my gallbladder removed thinking that was going to solve at least some of my issues but nothing changed. I have muscle and joint aches and feel very depressed. I get migraines, I have noticed hair loss, irritability, panic attacks and lately I've been bruising easily. I've had a colonoscopy, endoscopy, hydrogen breath test (negative) and a ton of blood tests. The colonoscopy showed lymphocystic colitis. My blood test for Celiac was negative. My blood work did show some vitamin deficiencies. I am scheduled for a lactose intolerance test this Friday but to tell you the truth, I'm so tired of being told that nothing is wrong with me. There is something going on and I don't know where else to turn! I'm at my wits end with the gastro doctor. He keeps telling me that he can't find anything and that fibromyalgia can cause abdominal bloating. It bloats shortly after I eat just about anything. By the end of the day I can't even button my jeans. Can I have a negative Celiac test but still be sensitive to gluten? Is there another test that I could ask for or should I just try to go gluten free to see if it makes a difference? I know eating gluten free will be a lifestyle change but I'm at the point where I will do anything to feel better. Where is the best place to find information on gluten and non gluten free food? Please help!

Sincerely, Staci

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Hello, and welcome to the board.

You ask: "Can I have a negative Celiac test but still be sensitive to gluten?" and the answer is ABSOLUTELY!!!!! Read the following articles:




For the three years I have been posting on this board we have been saying that celiac disease is not the beginning and end of gluten intolerance. Finally the research is starting to catch up with this. Is there any other way to get a diagnosis? Well, I don't know if your doctor did an endoscopy when he did your colonoscopy, and took biopsies to test for celiac, but that is really the only other testing that would give a celiac diagnosis. There is currently no test for non-celiac gluten intolerance - it is just a process of elimination. Many posters on the board have had years of symptoms and been through all the testing and have no diagnosis. They stop eating gluten and they get better. So we all know it, but the doctors aren't quite there yet. Some will tell you to try the diet anyway, and nine times out of ten you will get better. If have heard of very few who have come back and said, I am absolutely no better. There are some occasional posters who actually have undiagnosed lyme disease (about as hard to get a diagnosis for as celiac, unless you have a "lyme literate medical doctor" known as an LLMD, The only other test is if you have the skin form of celiac called dermatitis herpetiformis, in which case a biopsy of the skin adjacent to the lesion can be taken and, if positive, is a positive diagnosis of celiac disease. You can have the genetic testing to see if you carry one of the two major genes associated with celiac, but there are others not tested for in the U.S., and it is not diagnostic if you test positive, only predisposing you to develop it. There is a test you can order online at Enterolab which will test for IgA antigliadin, as well as the genes for both celiac and non-celiac gluten intolerance, and will also test for intolerances to casein, soy and something else I don't remember now, as well as giving you an indication of how your digestive system is functioning. This test is not normally covered by insurance.

Okay, so all that being said, if you just want to feel better you can start eating gluten free today if you wish. It needs no doctor's permission or prescription, you can self-diagnose yourself as gluten intolerant and start feeling better today :P It is of course your decision which path you choose to follow. If you want to start learning about going gluten free there is no better place to start than celiac.com. :D

I hope this has been of some help. Come back with any other questions.

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Dear Mushroom,

Thank you so much for all the information! There is no question that I am starting a Gluten free diet today. I have nothing to lose! I need to do some further research because I understand that gluten can be "hidden" in things. Also, after reading some other posts I understand that sometimes you actually feel worse for a little while when first starting gluten free? I'm worried that I won't know what to eat that will give me a little energy. I'm a HUGE coffee addict but I'm going to try to limit that a little as well. Thanks again and I'm excited to see if this works!

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