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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About sadsickgirl

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    1. sadsickgirl added a post in a topic Negative Blood Tests - Can I Still Have Celiac Disease?   

      Hi Mushroom, yes the gliadin blood testing, at least for the second blood test was for DGP. It is interesting that I have quite a few of the common vitamin deficiencies that are associated with celiac, low vit d and low b 12. 
      Seeing as I can't get any doctors to take me seriously I thinking of adopting the diet after easter. From those you have experience how much of your kitchen utensils need replacing? I know about the patsa strainer and toaster, but what about bread boards, wooden spoons , frying pans, stainless steel pots, cutlery etc?
      The diet seems easy enough but it's the cross contamination that I'd love some tips on how to eliminate/avoid. Thank you to everyone for being so helpful  .
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    2. sadsickgirl added a post in a topic Negative Blood Tests - Can I Still Have Celiac Disease?   

      Hi everyone thank you for your replies. If anyone would care to look over my blood test results to see if the complete testing has been done I'd really appreciate it.
      Original coeliac disease serology:
      Gliadin IgG  3 Units (<20)
      Total IgA      2.63 g/L (0.69-3.09)
      Transglutaminase IgA Ab <4 U/mL (< 4)
      More recent coeliac disease serology:
      IgA 2.55 g/L (0.7-4.00)
      Gliadin IgG Abs <1 U/mL (<7)
      tTG     1 U/mL (<7)
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    3. sadsickgirl added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Negative Blood Tests - Can I Still Have Celiac Disease?
      Hi I came across this forum early last year and was in despair because I thought my body was falling apart and had suspicions that I may have celiac disease. 
      More than a year on I feel my list of ailments is worse than ever.
      - I have a feeling of nauseousness and anxiety in the pit of my stomach which is completely unrelated to mood.
      - I have random short bursts of pain in my stomach
      - My hair is falling out in clumps and has become so thin
      - I have joint pain/ stiffness that feels like arthritis in my elbows, knees, and fingers
      - I have very painful upper back pain in between my shoulder blades
      - My sleeping is constantly screwed up, I'm either massively over sleeping or I'm not able to sleep at all
      - I have bad acne
      - I have a long history of severe depression
      - I also have an old (8+ years)  undiagnosed sports injury above my left hip that has stopped me from participating in any sport.
      Sorry to bore you all with my complaints but I'm at my wits end. I'm youngish (23) and I can't keep living like this - it's ridiculous. I have been tested by a couple of GP's for celiac and each time my blood tests have come back normal. I want to know whether anyone has been in the position of receiving a negative blood test and a positive biopsy, or other confirmation of celiac disease?
      I asked my GP today whether there is any chance of someone receiving negative blood work for celiac, but testing positive in the endoscopy? She said no, she has never experienced this. Please share your stories I'd be interested to hear if she is wrong. 
      Also given my symptoms list is celiac a real possibility, no doctor seems to think so, but I'm just not sure. 
      • 8 replies
    4. sadsickgirl added a post in a topic Please Help! Could I Have Celiac Disease?   

      Thanks for the info Mushroom, I'll have to see if I can request that test when I next see my doctor.
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    5. sadsickgirl added a post in a topic Please Help! Could I Have Celiac Disease?   

      Thanks for everyones suggestions and support, I really appreciate it. For those who asked I have been tested a number of times over the last six months for celiac. The doctors didn't tell me at the time as it was done as a routine screening for abdominal pain. Anyway I've since got hold of my blood test results. Whats interesting is in comparing the results it doesn't seem that the same tests were done and it seems like, whilst all three tests were negative, the results may be getting higher (the results are difficult to interpret, so I'm not sure). Anyway if anyone could offer any insight the results are posted below:

      Nov/2011 results:

      Gliadin IgG 3 Units (<20)
      Total IgA 2.63 g/L (0.69-3.09)
      Transglutaminase < 4 U/mL (< 4)

      March 2012 results:

      IgA 2.55 g/L (0.70-4.00)
      Gliadin IgG <1 U/mL (<7)
      TTG IgA 1 U/mL (<7)

      April 2012 results:

      Gliadin IgA Ab 16 Units (0-20)
      tTG IGA/IGG 8 u/mL (0-24)
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    6. sadsickgirl added a post in a topic Any Good Doctors From Sydney, Australia?   

      Hi everyone, thanks for the suggestions. I've decided to follow up with Dr Hungerford and hopefully will be able to see her in July. I really appreciate the help .
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    7. sadsickgirl added a post in a topic Please Help! Could I Have Celiac Disease?   

      Hi everyone thanks for all your advice. I'm just bumping this up at I'm still having problems. Whilst a number of you did suggest trying the diet, I'm hesitant to give it a go without being tested further. The reason for this is mainly because I know my family will not be supportive of me going gluten free unless I have a medical diagnosis to back it up and even then they'll probably complain about it. They think I'm a hypochondriac and making everything up and should just do more exercise and get out more. The exercise is hard due to my joint pain. At the moment I'm really struggling with doctors - none of them think I have coeliac disease. I had an appointment today where the doctor told me I had IBS and should go on the FODMAP diet. Can anyone give any advice on how to find a decent doctor with knowledge about coeliac disease? I'm in Sydney Australia and have tried googling for coeliac specialists to no avail. I've also posted under the doctors section asking for recommendations in my area but nobody has responded yet. I'm really at a loss as what to do. Is there anyway for me to convince my doctor to recommend me to a gastroenterologist? I don't like me chances but you never know. Also does anyone know of a coeliac gastro in Sydney? Sorry for the rambling post but I just don't know what to do at the moment.
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    8. sadsickgirl added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Please Help Me With Diagnosis
      Hello everyone,

      I'm mainly after Australians advice, specifically those in Sydney that can recommend some doctors that understand coeliac disease. I'm having a terrible time at the moment. Basically I've tested negatively for the blood test a number of times but I feel like I may still have coeliac disease and want to potentially have a biopsy done. The problem is there are no doctors that will take me seriously when I suggest this and say that if the blood test is negative then I don't have coeliac disease and theres nothing to worry about as I'm not really skinny.

      I don't think my symptoms are classically coeliac disease but I'm so sick of feeling awful all the time I want to get this investigated.

      - Severe hair loss - last 8 months.
      - I have severe fatigue, tired all the time for the past 3 years.
      - Severe depression for the past seven years, haven't responded to antidepressants at all.
      - Moderate - severe back and neck pain for the past 8 months. I've been seeing a PT and have experienced no relief.
      - Moderate joint pain which seems to be getting worse, for the past 8 months.
      - Mild to moderate to occasionally severe GI symptoms, but these seem very random and I can't really find a pattern or connection with what goes on.
      - Mild tingling/ numbness in hand and feet which like the GI symptoms is really random and follows no pattern. (I haven't told anyone about this as I pretty sure they'd think I'm mad).

      Basically I feel like I'm in my 8th decade of life, not my second. If there is anyone, anyone at all that can recommend to me a doctor that will take me seriously I would be eternally grateful. I really feel at my wits end at the moment. I just got back from my doctor who said I have IBS and should try the FODMAP diet . Part of the reason why I'm desperate for testing is my family thinks I'm a hypochondriac and won't support me going gluten free unless I have a proper diagnosis.

      Thanks for your help. Sorry for the ramble/rant.
      • 1 reply
    9. sadsickgirl added a post in a topic Any Good Doctors From Sydney, Australia?   

      Hi I'm just bumping this up. I'm in Sydney and am having a really hard time with doctors at the moment. I feel like I have some celiac symptoms such as joint pain, fatigue, flatulence, nausea, depression, sporadic tingling in hands and feet, random unexplained stomach pain and that this could potentially be celiac disease. However I've been to see a number of doctors about my symptoms and have had the blood test done which has always come back negative. Its got to the point where no one will take me seriously and I'm beginning to think that maybe I'm just crazy and should see a psychologist. I'm really not keen to just try the diet and see how I feel before trying more testing as my family most definitely won't take me seriously without a proper diagnosis (they already think I'm a hypochondriac). Sorry for the long ramble but if there is anyone in Sydney that can point in the direction of a knowledgeable GP or celiac specialist I would be so, so, so grateful. Thanks in advance for your help .
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    10. sadsickgirl added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Please Help! Could I Have Celiac Disease?
      Hi everyone,

      I've just joined up and am hoping I can get some answers to my questions. Thanks for all help in advance . I have been feeling significantly unwell for the last six months or so and haven't been in optimal health for close to seven years. I'm not sure as to whether my symptoms could be caused by celiac disease or not. I have spoken to a number of doctors about what I've been experiencing and when asked about celiac disease they have dismissed the possibility. Despite this I begged one of my doctors to do celiac blood work for me and it came back negative.

      So my symptoms are:

      - In the last six months I've started to develop horrible joint pain. My wrists, knees, ankles, fingers, elbows, neck and upper spine seem to be affected. I have had blood tests done for rheumatoid arthritis and they came back negative.

      - For the last two years or so I have been experiencing extreme fatigue. I always seem to feel tired and have little energy. I can sleep for a very, very long time and still wake up feeling tired.

      - Some what worryingly I have noticed that recently I seem to be experiencing small episodes of memory loss. This is very scary as I used to have a fantastic memory.

      Now on to less debilitating/ scary symptoms,

      - In the last two years or so I started getting headaches. Before then I never, ever got headaches. They're not migraines and aren't terrible but they are certainly there and can be annoying. (I don't know if this is relevant).

      - I get mouth ulcers. I had braces on from 12-14 and got terrible ulcers then, but I am still getting them. They aren't the kind that hurt particularly badly, but I do have them.

      - For as long as I can remember I have had some stomach upset after eating. Its not severe in any way and I presumed that it was normal, but its something that I've started to notice. Often I will need to release gas after a meal and my stomach will be ok (sorry for the TMI).

      - In relation to this I do suffer from flatulence, late nate nausea (not severe) and a small amount of heart burn.

      None of my GI symptoms are severe and I presumed that everyone felt like this.

      Now on to more obscure symptoms:

      - For a long time now I have had a terribly itchy, inflamed scalp. Its not dandruff and dandruff shampoo doesn't work but I'm listing all my symptoms so I thought I'd wack it on the list.

      - Chronic yeast infections from the last year or so. (again sorry for the TMI).

      So basically I don't feel very well at all, but my doctors and family are treating me like a hypochondriac. As I mentioned my celiac blood tests came back negative so I wanting opinions as to whether its likely that I do have celiac disease? I don't think any of my doctors would be keen on sending me for a biopsy as they are treating me like I'm making my symptoms up/ they are not important.

      Please respond as I would love to hear about other peoples experiences. Thank you for taking the time to read my waffle.
      • 15 replies

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