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
Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere"
My original score was >200...they stop counting at 200. I have had two tests since then, and both have been >200, still. So, I guess, in reality, it could have gone down, since I have no idea the actual starting value...300, 400. Whatever it is, it is still reading over 200, which is why I think maybe other autoimmune disorders could be involved. Especially since I'm still not feeling 100%. I did have some of my bowel removed 11 weeks ago, so it's hard to know what symptoms are from what.
I'd like to know this answer, too. My TTG is still over 200 after a year. I asked my doctor for an IgA AND IgG, but at the lab, they just did the TTG (IgA). I want to ask about other autoimmune disorders, too, but would like to have some more info before I go back to him....since we have to do this on our own, it seems.
It's true, these are great....gotta tighten up those deep core muscles! They can also help prevent back problems..BONUS! I'm a Kinesiologist and personal trainer and this is always where we start...from the inside-out
Is it possible that she is constipated? It is tougher to get enough fiber on the gluten-free diet, so make sure she is...regular? I ended up in emerg once with a hugely distended belly and lots of pain and they took an x-ray (weird) and the doc told me I was "REALLY VERY backed up". Kind of embarassing I have found NutraCleanse to be the best gluten-free product so far to keep things moving. It's a blend of flax seeds and some other helpful ingredients. I also take flax oil. Another option that I have found helpful is a blended fruit and veggie drink. Just make sure you use a blender or Vitamix type thing and not a juicer, or you'll lose all the pulp...the fiber I hope this helps?
The surgery was for a rectal prolapse and sigmoid resection...the damage to my insides was pretty severe by the time I was diagnosed, and needed some repairing. My colon was repaired and he removed part of my intestines. I had a very positive blood test last February and went gluten-free because there was a long wait for an endoscopy. I didn't get the endoscopy and colonoscopy until late September...I only did a brief gluten-challenge which made me extremely sick, but I still had a positive biopsy. The surgery was November 17th.
But pre-surgery and post-surgery alike, I have not gone more than a couple days feeling "good". I definitely felt worse before going gluten-free, but please try to understand.
As for my bloodwork...I don't have a GI. My family doctor didn't seem to know at all what it meant when my TTG was still over 200 in November, before my surgery. I just had a full workup done (at my request), because I wanted to see if there was anything missing...maybe a vitamin deficiency, etc. Everything looks normal to me, except the TTG, which, again, is over 200. I am meeting with my doctor on Wednesday to discuss my bloodwork, but I am uncertain he will have much more to say than last time.
I have been told that you don't "treat" bloodwork. But if my antibodies were that high and I DID NOT have symptoms still, then maybe I would let it go.
I don't know, maybe I just need to stop trying to figure out what's wrong. All I really want is to feel better. I want my symptoms to be managed. Or I want to know that this is as good as it gets so that I can just accept it and learn to live the best I can with chronic pain and discomfort.
My head hurts enough right now that it is borderline difficult to even find the right words. I have been gluten-free for almost a year and I still have daily symptoms..ranging from mild to severe. I know that nobody is ever 100%, but I don't even feel close. I had colorectal surgery nearly ten weeks ago. It was major surgery, so I know that plays a part. I'm still unable to work or exercise much. But I'm just in pain and discomfort on a daily basis.
Going gluten-free all but eliminated my nausea, vomiting and diarrhea. But the symptoms that remain include brain fog, migraines, tummy distension, gas, constipation, insomnia, depression, anxiety, muscle and joint pain, extreme fatigue.
I am very careful with what I eat. My entire house is gluten-free and I have done tons of research. There is no hidden gluten. But my TTG levels are still over 200. From what I have read, this means my antibodies are still really high. Which generally would mean gluten in the diet...but there is NOT!
I've removed dairy. I have recently tried removing soy and corn...I barely ate any, anyways.
When does this get better? The chronic pain and/or illness is seriously wearing on my psyche. I know I have Celiac Disease, but I don't know why I only seem to be minimally responding to the gluten-free diet. Or is it just taking a really long time? I can't seem to find clear answers other than the Celiac diagnosis. I don't want to cut out any more foods. I'm already feeling depressed about what I've eliminated so far.......which I would NOT feel depressed about if it actually seemed to make a difference! Yes, I am WAY SICKER on gluten, and I will NOT go back.....but my health and quality of life are still not normal...not even functional.
I don't know if I'm really making sense, or what I'm even asking. I'm 29. At this point I'd say I could count how many "good days" I have in a month on one hand. This can't be right!
This is very true, one just has to ensure they're still getting all the proper carb-fat-protein ratios, vitamins, and minerals...logging your foods can really help with this, and, if necessary, as most have said..supplementation and probiotics.
I am almost 8months gluten free and JUST had my biopsy done, with only 7-10days on the gluten challenge (supposed to be 6-8WEEKS), and my biopsies were very positive. This tells me...STILL HEALING. And, as I even type, I have brain fog, headache, yesterday I was so bloated, which later turned into foul gas. I feel like I shouldn't still be having symptoms on a daily basis (although the damage has actual caused me to have a rectal prolapse and an intussusception, so it must be pretty extensive damage, as I require surgery). But still...I hate it. I'm SO careful! The ONLY gluten in my new household is fish food, and I'm going to be getting gloves to deal with that I'm still investigating my makeup, but what I put on my lips is gluten free. I've tried investigating other things, and I'm going to start again...soy seemed to come up as a possibility.
What I'm getting at, is that if I'm showing damage after 8 months gluten-free, then I think you're symptoms are normal. It's really tough not knowing whether it's gluten damage or something else, though, isn't it?
Also, with regards to grain-free, which a couple of you mentioned. I was really shocked when I went to a dietitian and she had me work with the Canadian Food Guide...wtf? I had completely forgot that we are "supposed" to have 5-7 servings of grains per day. I have started logging my food with myfitnesspal.com (great app and site), and I STILL struggle to get enough carbs, even though I eat lots of veg and some fruits. Grains give us energy, so it MIGHT be worth a shot adding some more grains to boost your energy. I haven't noticed a big difference, but I never thought of things that way. I had practically cut out an entire food group, and regardless of carb content, grains contain nutrients/vitamins that other foods don't...that's why there are different food groups!
Anyways, it's just "food for thought", if you will. I'm still not sold on it, I've never been a huge fan of the food guide, I usually just try to eat carbs, protein, and healthy fats with each meal/snack. But when I looked at it in a different way...the nutritional content...it sort of makes sense!
(PS: when corn is used as a grain, it is part of the grain group, ie. gluten-free corn tortillas)
Thank you for the responses! Now, I am not a quitter, so I feel a little like I "wimped out", but the intensity of my migraine the 3rd morning definitely changed my mind about the "challenge". I will call the doctor on Monday and see what he says. He did, after all, give me the option. And if I was asymptomatic then I could see staying on the challenge for sure. But I puked so many times yesterday that my throat is sore and that's just not healthy. The pain and the fatigue are not worth it, either. After they do the colonoscopy/endoscopy they are scheduling me for surgery, so I'm going to need to be as healthy as possible going into that. I think this is all the proof I need that I am indeed Celiac!
Why did I want the definitive diagnosis? I'm the type of person who needs to KNOW things. I thrive on information, numbers, facts...not so much theories and probabilities. I like certainty. I know life isn't about certainty, it's just what makes me comfortable. I feel weird saying I have Celiac Disease when I don't have the data to back it up, aside from a very positive blood test and very telling symptoms. I just graduated from university, so I guess I'm used to having to prove things.
So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!
I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.
If anyone found great ways to cope with the challenge...please...SHARE!!!