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
I had my appointment with Dr. Kelly last week. I was very pleased with her. She said that even if it isn't celiac there are a number of food intolerances that are not well understood yet. She ordered an endoscopy/colonscopy and an u/s as well as a bunch of blood tests, including the TTG IgA, DGP, Total IgA.
Thanks so much for that feedback. I called yesterday and asked if they had any earlier openings (my appointment is the 18th) and they said only with Dr. Sheth - for this week. I think its pretty telling when a doctor is so available and yet their colleagues are booking months out...
That is what I'm dealing with too - my Vit D was 13, and that was after 2 months of daily supplements. I'm torn between just doing the diet now and waiting, but we are investigating some other possible causes too, so I think I'm going to wait since I don't want to be confused about what the problem is and what fixed it, etc.
I am very sensitive to perfumes and have that exact reaction - sinus headache. I've eliminated as much perfume from my life as possible and my regular headaches are now much rarer. I can actually tell what i'm sensitive to, as soon as I breath it in my sinuses hurt. The laundry detergent aisle in the grocery store and BJs is extremely difficult for me. As such we don't burn any candles or incense. It's so hard to find unscented soaps and things, so I have to just be careful with those - I stick with ones that I seem to have the least problems with.
Hmm, not sure that is it, it feels like the back of one of the cervical vertebrae is sticking out much further than the rest, I can feel around it on all sides. For me it isn't as severe as the picture of the hump (then again I can't exactly see it properly either), but it hurts regularly. Could be something completely different. I feel like I have so many freaking issues I don't know what to concentrate on, but since none of them are life threatening I just get the brush off from everyone. I haven't even tried to figure this one out yet.
I'm looking into celiac for myself, but I also am wondering if my son might have it too. We have been having attention, anxiety and other behavior issues with him. He is in Montessori school actually, which makes his attention issues that much more puzzling, because he has so much control over what he does, it isn't like he's being asked to listen to the teacher repeat something he already knows, etc. Once I get a hold on whether or not gluten is my issue, if it is, I'm definitely going to work on finding out if he might have it as well. I'll let you know how it goes.
Is it hard or soft tissue? I have that too - it feels like a bump in my spine is sticking out, and often hurts - pain radiates up and down my spine and out to my shoulders from that spot, I feel like I am hunching too much and need to stand up straighter or lean my head back. I always figured I had bad posture, not sure what it might be though.
I don't think we've checked my Vit K specifically, but the doc ran a CBC and I believe that includes my platelet count and that came back 'normal' (again, I haven't gotten the specific numbers) I've seen lupus come up in a few of my attempts at figuring out my symptoms. I guess I hadn't considered it as seriously because I don't have as many of the primary symptoms (face rash, fever, joint pain), but I am keeping it in mind.
So, I have my appointment at BIDMC in a month, so I figured I had better gluten it up until then to give myself the best chance of getting a good answer. I am making sure I eat 4 pieces of whole wheat bread every day. Yesterday I had that and I ate a bunch of crackers. I was looking at threads on this forum about the DH rash, just thinking to myself 'Well I don't have anything that sounds like that'. Then I got up from the couch and something on my butt/back of my leg hurt, when I check it out I have a small patch about 1.5" in diameter of red bumps that look suspiciously like DH. Nothing on the other side, well maybe a bump, but I'm also pretty positive that I didn't have this the day before and I don't have a lot of spots elsewhere. We'll see if that develops further I guess. I am going to try calling BIDMC every few days to see if any earlier appointments have opened up too.
I'm starting to see what people on this forum are talking about with respect to family members and support etc. My family all looked at me like I'm crazy when I told them I think it might be celiac. Including my brother who says he hasn't had a solid BM in 5 years, but its colitis (confirmed by a GI through a colonoscopy apparently). I asked him if he was tested for celiac and he said yes, but who knows how long ago and with what tests. I wasn't saying I am sure I have it, just that it seems like a possibility.
I have had my thyroid tested so many times. My TSH levels were pretty much smack dab in the middle of the reference range last time I had them tested. I might pursue that too if this road doesn't help.
I missed the call from my doctor's office friday afternoon, they said on the voicemail my labs came back, Vitamin D was still low (it was only a few days after the previous test) but everything else was 'normal'. I need to call monday and make them send me the actual results, since I don't even know what test they ordered for celiac. I'm beginning to despair as this fatigue is getting unbearable. Last night I slept 12 hours and napped one hour and was very tired all day.
Any experience with Dr. Susan Kelly at BIDMC? I made an appointment there, they gave me Dr. Sheth (with an appointment for Monday on Friday) who I saw a lot of bad experiences with mentioned on this forum (wonder why he's so available? ;P ) So I called back and I switched and they gave me Dr. Susan Kelly, but I have to wait a month. I would rather do that then end up with a bad experience, if I'm hauling myself all the way into Boston. The Medical Director Dr. Ciaran Kelly, is I think the one most people are referring to when they say Dr. Kelly at BIDMC, so I was wondering if anyone had any experience with Dr. Susan Kelly.
It's very hard, because I'm an outgoing person and so when talking to folks I can rally - I don't seem tired, because I'm an animated speaker, etc. But when I sit down to get something done, or try to do housework, I just can't. It's aggravating.
I decided to heck with this crap - I made an appointment at the Beth Israel Celiac Center. I'm tired of futzing around with people who may or may not know less than I do about something. I am just going to go right to the experts and they can tell me. That way if its something else I can really feel like I've properly ruled it out, not gotten one misguided negative blood test.
Yes, I need to ask for copies I haven't done that with this doc. I have had some gastro symptoms, but they never seemed like a huge problem. Every so often I will get a sudden bout of diarrhea which seems to be something I ate, like my body is trying to desperately purge it. No fever or other symptoms, no one else gets it, so it isn't a food poisoning issue or a virus. It usually lasts an hour maybe and then its done. My stomach does hurt almost all the time, and often it hurts bad when I eat first something in the morning (that has been happening a long time - before all the medications). I have had some blood in the stool or on wiping, but I assumed it was more of a hemorrhoid-type issue - it was always bright red and never very much. I also do often have bad gas pains. The totality of those symptoms never seemed bad enough to pursue with my doctor. The fatigue is what has pushed me over the edge - it is reaching a debilitating state. Much of these gastro symptoms I have brushed off as probable side effects of the medications I'm taking, and I think my doctors have done the same.