Recently diagnosed. Age 52. Female. USA. My symptoms prior to diagnosis were abnormal ANA (Anti-Nuclear Antibodies) labs, joint pain, fatigue, peripheral neuropathy (numbness and tingling in arms and legs) and brain fog (lack of concentration and memory recall). I had no typical GI symptoms which is why it went undiagnosed for 3 years. In fact, I spent 18 months seeing a Rheumatologist who at least ruled out Lupus, RA, etc. Finally, went back to GP who ordered Celiac panel as that was the last of the Autoimmune disorders we had not tested for. I was seronegative for antibodies (up to 10% of celiacs are because the antibodies do not cross the mucosa into the blood stream) but positive for Celiac Genotype HQLA2. Given my symptoms and the positive HQLA2, I went on a gluten-free diet. It's been 4 weeks now and I feel like a new person. Can't believe it is such an 'easy' fix -- something within my control and no pills. Still waiting for initial consult with GI physician (she's booked out for another 2 months). Not sure if she will recommend a biopsy. But if I have to do a Gluten challenge to do the biopsy, I will probably refuse because I feel so good now. Other than absolute confirmation, are there any other advantages to doing the biopsy? Hope my story is able to help others.
My Celiac Story. Recently diagnosed. - Gluten Free Guerr...
My Celiac Story. Recently diagnosed.
Well done on getting a diagnosis. So many fall into the camp you are in with negative blood tests and shunted around for years. I had similar, and I am still angry at how messed around I have been for years, and how coeliac is still not on my notes. Had to battle for 15 years to get the gene test, and even then made to feel I was being offered something that is above and beyond the expected healthcare. I appreciate you feel happy to have issue resolved, but I feel angry reading these posts where such a common illness still goes so long for want of proper diagnosis and for lack of public knowledge on the range of symptoms. It just should not be this way. It is still seen first and foremost as a digestive condition and no doctors seem aware of the wider range of symptoms. I'm happy for you, but equally furious that the knowledge and learning just isn't getting through to the consultants and doctors. It's crazy. What the hell are our respective countries coeliac charities doing when no one has clue about the diagnosis and symptoms of coeliac?!
I agree, there needs to be more education about non-GI Celiac symptoms. Not only amongst medical providers but the general public as well. I will be educating as many people as I can about it. I consider myself lucky to have an answer. Sorry for your long battle. It shouldn't have to be that way.
Knowledge is power, and it's a big learning curve with coeliac/celiac. Upwards and onwards and speedy recovery for you.
I was dx last year at 51, with high bloodwork and the genetic marker. I had a a colonoscopy because I was having severe diarrhea and gluten free diet didn’t fix it in 3 months. I was also dx with colitis at that point. Originally by GI said an endoscopy wasn’t necessary because the celiac was obvious (my bloodworks were through the roof). He ended up doing one for another reason so he took samples (no gluten test). With 3 months of glutten free, there was no sign of the celiac which was a good confirmation that at least that part was healed up. So I would say if yiu are confident it’s under control, I would also refuse the endoscopy. I wouldn’t want to risk going back on gluten.
Thanks for your reply and advice. I will remain gluten free as long as I am symptom free. So glad you healed up with 3 months of gluten free.
Hi from the UK, MartiMac 👋 . Love the name, is that a ref to Back to the Future? Or coincidence? One of my all time fave movie trilogies. Wouldn’t it be good to travel in to the future and see the outcomes of our diet choices?!
Glad you’re feeling better gluten free.
Personally I have done a gluten challenge after being gluten free for 10 or so years due to female health issues.
Coeliac antibodies came back less than 2 (range 0 - 7). Positive for wheat allergy antibody. My doctor said it’s very possible to be sensitive to components of wheat aside from classic coeliac disease. Long story short I had on going ibs even though gluten free that lead to the gluten challenge and being tested for coeliac as never been tested before. The gluten challenge was hard to do and tmi but diarrhoea was bad.
Re the coeliac disease endoscopy/biopsy test to confirm. That’s up to you and you know your own body. It might be different in the USA, but the advantage in the UK to ‘official’ dx is monitoring of any vitamin deficiencies and tests for associated autoimmune diseases. Especially iron, B12, folate. And autoimmune thyroid disease.
Interestingly your symptoms seem to be the neurological kind. There’s a research centre in Sheffield in the UK that specialises in gluten ataxia and neurological gluten intolerance. They discovered another gluten antibody associated with gluten intolerance and a high proportion of celiacs have it but it’s also another standalone gluten related disorder. It’s part of the gluten spectrum of disorders. Coeliac disease blood test is for IgA ttg2 if I recall correctly. The skin manifestation DH is associated with another IgA ttg antibody. And neurological manifestations is associated with IgA ttg6 (discovered by the Sheffield researchers). It’s associated with later dx as not the classic reaction to gluten intolerance of digestive issues. It’s possible to have the biopsy be negative for coeliac but have the IgA 6 antibody. It’s been shown that the majority respond to a gluten free diet like coeliacs when started early enough. Might be worth looking into that.
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pubmed.ncbi.nlm.nih.gov/329...
Research by Sheffield researchers on different igA ttg antibodies. Prof Hadjivassiliou main researcher to look up if interested.
Researchfan - what a great source of information you are. Your name is very appropriate, indeed. I will look up the Sheffield researchers. There is so much to learn on this Celiac journey but I am not one to shy away from information. As Benjamin123 said in an earlier post, knowledge is power. Here in the US there is not much benefit to being 'officially' diagnosed with Celiac. At least for me, there is not. Personal health insurance plans are so vastly different in what they cover. Also, we can itemize gluten-free purchases on our tax returns with an official diagnoses. But again, itemizing is not an advantage for everyone's tax situation. Oh well, onward in my journey. So nice to have others who can relate. By the way, I love the the Back to the Future movies, too but name is purely coincidental.
I had exactly the same symptoms, still experiencing a little bit. Was diagnosed last year with endoscopy. Had endoscopy and colonoscopy because of the occult blood in my stool and after biopsy found out that I have celiac disease. Serology test was negative as well. Positive genetic test and positive biopsy was consistent with celiac disease. I’m 40 and was having symptoms for 2 years but had no idea about celiac. It all started after I got COVID in 2020 and I’m assuming corona virus triggered my celiac gene. Also have very high ANA,being monitored for that since 2017. Now I think if it could be related to celiac. Because I also get checked for Lupus and RA since 2017 and so far negative for both ( thank GOD). Can I ask how high is your ANA?Saba
biomedres.us/fulltexts/BJST...
Here's an interesting article I found about ANA and Celiac.
It's so validating when someone shares your same symptoms. We are not alone. My ANA was checked 5 times all of which where abnormal. My values were: 1:1280, 1:640, 1:1280, 1:1280, and1:320. (Normal is considered < 1:40). Since Celiac is an autoimmune disorder any number of things can set it off, from stress, to other illnesses, to aging, etc. Science is still not sure. So, in your case it could have been COVID. Not sure about mine. All I know is I'm glad to finally have an answer.
Thank you:). Mine is 1:640
One more thing I have learned is that there is a strong correlation between Celiac and Primary Biliary Cirrhosis/Cholangitis (PBC), as well as, other immune disorders. My Mother had PBC over 15 years before she passed away at 82. Thinking back on things, it's possible she may have been undiagnosed Celiac. Her physicians never told us that reciprocal screening for both is crucial. It is sad that Celiac education of physicians is lacking and that patients have to needlessly suffer without the correct diagnosis.
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