This Celiac.com 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 Celiac.com 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 Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thank you both very much! I feel much better now. I did specifically ask the pharmacist and he said "it has gluten in it" but I agree it didn't make much sense. Maybe he was confused? I appreciate the responses!
I'm looking for some thoughts and advice regarding gluten in injections. I have to take a new medication and my pharmacist said it does contain gluten. I have celiac disease so obviously it seems counter intuitive to give myself a shot which contains an ingredient my body hates. Unfortunately there are no substitutes for this medicine but I only have to be on it for 10 days. My GI doctor thinks that because I'm not taking the medicine orally, I shouldn't have a reaction from it. He didn't really seem certain though. Does anyone know more about this? I don't react topically to gluten, it's never affected my skin or anything. Hoping it won't be a problem!
I was diagnosed with Celiac back in September and just last week tested positive for primary hemochromatosis (I'm a C282Y homozygous, meaning I received the mutated gene from both parents). I never really got better despite going gluten free and I think it's because I have very elevated iron levels. I'm meeting with my doctor next week to figure out a course of action (if I need a liver biopsy or not). I'm only 27 so I'm happy I figured it out now I guess. Unfortunately, my father currently has stage four primary liver cancer, but I don't know if it's attributed to hemachromatosis or not. I hope not as his cancer might have been prevented if so.
Some of my symptoms include: bronzed/orange skin, irregular menstrual cycles, thinning hair, brain fog, metallic taste in mouth, joint pain, loose stools, depression and fatigue.
I am not thrilled that I have to get blood drawn.. but if it means I'll feel better then I'll try anything!
I was diagnosed with celiac disease last September and immediately eliminated gluten from all aspects of my life. I wouldn't even let my husband bring it in the house! I started to feel better.. but then I noticed weird symptoms began surfacing again about three months into the diet. Of course I thought it was CC or other food sensitivities so I became even stricter (stopped eating all grains and dairy). Still didn't feel any better. I had all my bloodwork retested and discovered I was vitamin D deficient so I started taking supplements everyday and didn't notice much difference there either. Aside from that the only lead I had was that I had very high ANA, macrocytosis (enlarged red blood cells, which wasn't from the obvious causes of alcohol, folate of B-12 deficiency) and I had high iron (my primary care doctor didn't even blink at that).
From February until now my hair has gotten extremely thin, my nails look totally wacky (the white part extends way down into my nail bed. They are also very brittle) my menstrual cycle isn't regular, I have constant brain fog, my skin looks orange (even though I rarely go in the sun), my joint hurts (especially in my hands and feet) and on any given day I'm an emotional mess. I had a colonoscopy and endoscopy done and my GI doctor said my villi are all healed from celiac. He also removed some benign polyps. Other than that I was fine. I went to an RA for the high ANA and he tested for every autoimmune disorder under the sun - including lupus - all came back negative. I was literally at my wits end!
My GI doctor mentioned that it was unusual that I had an elevated iron level considering I don't take supplements, I don't eat much red meat, and I menstruate. I didn't consider the high iron, because as a female you are always told you're going to be anemic and you always need iron. He ordered the test for hemochromatosis and come to find out I have the genes from BOTH parents (I'm C282Y Homozygous). Hemochromatosis matches almost all of my symptoms so I'm going to go to a hematologist soon for treatment. I REALLY hope that resolves everything.
I find it so strange that I developed celiac disease and hemachromatosis almost at the same time. Does anyone else have the same thing? I am also curious is this has caused my unexplained macrocytosis since iron plays a large roll in red blood cells. Still not sure why my ANA is so high, but hopefully that will resolve on it's own eventually. I want to he healthy again!
That's good to know Celtic! I'm sure it would be better to wait a year before I get re-tested, but it can't hurt to do it now I suppose. I've been gluten-free for about 6 months. Do you remember what your ANA titer and pattern was? Mine was 1:1280 with a homonegenous pattern. My doctor never even discussed this with me. I accidentally came across it when I was faxing my medical records to a new doctor. I didn't even know what it meant.. looked everything up online then freaked out!
You are so right about the grass being greener. All my life I was tiny on top and larger on the bottom. I just wanted to be more proportioned so I decided to get the surgery. Yes I look much better in t-shirts.. but I think it took me having larger breasts to know they don't really make me feel all that different. If anything, they are just causing me more pain than they're worth!
Thanks for that information Gemini. I wish I knew more about my body and genes before I had the procedure.. but what can you do..
I met with my doctor today and he was very supportive. He doesn't think the implants are causing me the issues, but he said that if my other doctors recommend I get them removed he'll do it free of charge and it's an easy procedure. He said I should bounce back because I'm young. Honestly I don't care about my figure.. I just want to feel better! I have an appointment with a new GI doctor at the end of the week and another appointment with an immunologist. I'll see what they say and will definitely get my ANA tested again. At the end of the day if I have to get them removed, I'm okay with that. It's my husband I feel bad for! haha.. he's amazing though and only wants to see me healthy too.
Thanks for all the support here. I really appreciate it!
Funny.. I've recently been having jaw pain too. It comes and goes but it's definitely annoying. Honestly though, I think a part of it has to do with anxiety. I tend to clench my teeth when I'm anxious and I don't notice it. Keep me posted though if you find an answer.. perhaps it has to do with a vitamin deficiency too?
I was on birth control for 4 years and about the same time I was diagnosed with celiac I stopped taking it (because by husband and I want to TTC eventually and my insurance no longer covered by birth control). My periods have been 35-40 days ever since and are super heavy and painful. Despite going strict gluten-free.. I still have some odd symptoms that lead me to believe I might be intolerant to other foods I don't know about yet? Either way I definitely notice a difference in that department. I'm becoming more regular (fortunately) because I'm finally putting on weight.. but man, I would die if I didn't have advil around that time of the month!
Thanks for looking up all the information Skylark! I've been doing some research too and there are a lot of reported cases similar to mine.. but I know that celiac disease can cause some pretty wacky symptoms too. It's just strange that I'm not getting much better, and actually seem to be developing other odd symptoms. It could be I have another underlying autoimmune issue or that the implants are just making me sick..OR that I'm taking longer than normal to heal. I don't think I'll ever know.. but I will definitely follow up with my doctors. I'm 27, pretty athletic, and very healthy from a dietary standpoint. I eliminated dairy, almost all grains, corn (although it's in everything so I have to be more careful) and I take a multi-vitamin everyday. I want so badly to be healthy and to stop thinking that I'm a "ticking time-bomb"..on a daily basis I never know if I'm on the road to recovery or just getting sicker.
I think you got it right Bubba's Mom.. we become anxious when we don't notice results right away. That's definitely where I am right now! Blah
Thanks for all your input everyone. I have an appointment with my doctor tomorrow and I'll let you know what he says.
Thanks for your input you two. I've been killing myself over it. I can accept that I have the genes for autoimmunue diseases.. but I can't cope with the notion that I've made myself sicker or caused my health issues by getting unnecessary surgery. The high ANA is what really bothers me.. but I had that test done when I was first diagnosed with celiac back in September. I've heard of it coming down after going gluten free? I guess I could get it retested and see..
To be honest I think I know exactly what triggered my celiac.. I started a new job, moved to a new town, got married, and found out my dad had stage four liver cancer all in one month. Bam.. stress upon stress. I wouldn't doubt I had it before that too.. but I never had major symptoms until around that time.
I'm still weighing my options about my implants though. I just have so much anxiety over it.. but I don't want to "disfigure" myself if I don't have to. At the end of the day they are uncomfortable so I should probably have another consult with my doctor. Arg... I know I just need to give it more time and see. Thanks again for letting me vent here!
Not sure where this post belongs but I wanted to reach out for some advise/opinions.
Two years ago I decided to have a breast augmentation. This decision took years to make and after I found a very reputable doctor I decided I should just go for it. I was 25. Fast forward two years, and I have full blown celiac disease, HIGH ANA levels, elevated liver enzymes, thinning hair, jaw pain, and my chest is just always uncomfortable. I thought when I was diagnosed with celiac, that was the answer to my health problems. I've been strict gluten-free for 6 months (recent bloodwork still shows elevated tranglut levels but normal gliadin levels).. but now I'm wondering if it's my implants. I'm sure autoimmune issues is in my genes, but now I'm concerned I just added fuel to the fire. In the next few weeks I'm going to run some more bloodwork and meet with a new GI doctor.. but I'm seriously regretting getting the surgery. Looks mean nothing if you're unhealthy and unhappy. My husband thinks I'm over-thinking it too much, but I just have this "gut" feeling that I can't shake. Any advise or opinions are appreciated. I know this sounds like a very "first world" problem.. but it's a big decision to get them removed.
I am so so sorry Jess. I know words won't do much good now but just know that when things happen that are out of your control there's always a reason. Nature is smart. I know everything will work out for you soon and you'll have the baby you've been trying for. As you know I'm sort of in the same boat.. I want to have a baby very soon but I feel like my body just isn't healing as fast as I'd like. These things take time unfortunately and can be so very frustrating. My heart goes out to you.
Thanks so much for all your VERY helpful information!! You told me 100% more than my own doctor.. who immediately scheduled me with a dietitian because he said I "wasn't following the diet." UGH! I have definitely cut out dairy and probably need to lay off all the fruits and veggies.. most likely over-doing the fiber lol. I feel best in the morning then it gets worse during the day (severe bloating, fatigue, feeling spacey). Can other autoimmune disorders cause an elevated Transglut IgA/tTg? Thanks again for your help!
Yes I'm still having some symptoms unfortunately.. bloating..brain fog..mood issues.. but they certainly aren't as severe. My BM's are a bit better I suppose? ...perhaps it's just all hormones too. I went out birth control a few months back and I know my body is still recovering from that too. I went off dairy so hopefully that will help!