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
Thanks for your thoughts and help!!
For me, my TSH is 1.15, and my Doc is know for treating subclinical thyroid issues, so I'm thinking that (I'm hoping that) he would've picked up on thyroid issues. Maybe the OP has an elevated TSH.
My lightheadedness is seemingly random. I do have the "dizzy upon standing up" symptom, but also I could be just walking around, or standing at the sink or whatever and feel like I'm going to pass out (eyesight goes, ears ring, heart races, feel weak, and feel a downward pulling) that only lying down helps. This also happens when trying to work out at the gym, so I don't anymore. I'm hoping that gluten-free (or even free of my known food allergens) will solve this symptom because it is really limiting and irritating.
Thank you very much for your help once again!! I may check out Tractor Supply (we have one near us)even after de-glutening my grandma's pan. I have a feeling we will need one gluten-free, and one that can be used with gluten containing products.
Just my 2 cents.... We are now in a society that is awakening to health. As a result some people take supplements, drink expensive juices, follow rigorous workout schedules, avoid carbs, sugar, processed foods or chemicals, and the list goes on. This is all done in the hope that individuals will feel great and live long, healthy lives.
So now, I have to ask.... If you end up finding that you feel much better and healthier from avoiding gluten, and whatever symptoms that you are having subside on a gluten-free diet, then what makes not eating gluten so different from all of the other things that the rest of society do to help them feel optimally healthy??
FYI... I have had a negative blood test, and perhaps my biopsy will be negative too, but if not eating gluten makes me feel like a human being again then that is how I will eat. There is no shame in doing what you need to do to take care of your body, and only you know how you feel. HTH
I am also really light-headed and dizzy. Is this a common symptom of celiac or not? I also suffer from constipation and have started having a hard time swallowing. My blood tests showed a low level of TSH. Is thyroid related to celiac?
*****I don't know why the above didn't show the OP's text in the quote block, hmmm******
Hi there! You aren't alone with this symptom. I don't know how much help that I can be because I am still awaiting biopsy results and had a negative blood test, but near the top of my symptoms list that need to go away is dizziness and light-headedness as well. I can go a week without much of a problem with it or I can go a week without being able to stand upright without feeling like I'm going to pass out.
Assuming that they have ruled out other possible causes of this for you (i.e. heart or neurological problems), my understanding is that Celiac can cause this to happen.
For me, I have had many tests and my heart and brain are fine. I am convinced that my problems are a direct result of either Celiac, food intolerances, or food allergies. Maybe even all of the above. Hugs, I hope you start feeling better soon!!
I don't know that I would have thought about that! I guess eventually thinking about all of the possible sources of cc will be second nature.
Also, does anyone know where to buy a cast iron pan that isn't pre-seasoned? I have old cast iron from my grandmother, and before she gave it to me we purchased a pre-seasoned, cast iron pan (wasn't cheap) in which the "seasoning" promptly flaked off. It looked more like a coating of teflon rather than a seasoned cast iron pan.
Thank you so much for all of the information!! I think making sure my levels go up to mid-range will be attended to just as much as avoiding certain foods. Hopefully the combination of these things will make me feel human again!
Thank you both for your help!! I had a follow-up with my PCP and he also told me to go ahead and go gluten-free regardless of biopsy outcome, and I also found out that I have some IgE mediated allergies to many foods including soy and peanuts, so I will be excluding them as well. Hopefully I will see some good results!
So, I am a little miffed I think at the lab personnel. I know my Doc ordered a tTG, Gliadin Antibody, and total IgA, but when I was getting the blood drawn one of the lab ladies commented to the other that she was going to change the order to the complete Celiac panel. Well, it appears she changed it to only the EMA without total IgA. My result for EMA is "negative" (that is all it says). Am I right that without the total IgA this result really doesn't mean much?
The good news (I think) is that I had the endoscopy yesterday, and have an appointment to get the results in 9 days. They were also looking for Eosinophilic Esohpagitis, but the GI said he couldn't see any damage to the esophagus or small intestine. Honestly I have mixed feelings about getting these biopsy results. Celiac really seems to encompass all of my problems, and I really want to finally have an answer for all of my problems so I can work toward feeling well, but it would be nice to think that I could keep enjoying bread all of my life.
I know from my reading that people with Celiac often have low vitamin B and D levels, but I was wondering if these are normally "off the chart low" or if they can be low-normal range. Over a year ago I was told to take Vitamin B6, B12, and D supplements because my levels were at the low end of normals (I don't have the B levels or reference, but the D was 42 (ref 30-100) and I was tanning a lot at that time (should've helped Vit D levels). Now, after taking 5,000IU of D3 daily my D level has dropped to 33 (ref 30-100). The Doc didn't check B levels this go-round, so I don't know what they are. To me it looks like my potassium and sodium are low-normal as well (even though I eat tons of salt because of low BP and pre-syncope) with Potassium at 3.8 (ref 3.5-5.5) and Sodium 137 (ref 135-146).
Anyway, just curious if the mal-absorption of Celiac shows drastic depletion of these things, or if low-normals are common among those with Celiac.
Sorry for the half vent, half needing info/support. All of this waiting and no real, new information to make me know one way or the other is really getting to me.
Gosh I hope you see this...I know it has been a few weeks since your post. I live in the Fredericksburg area and have found a Doc that I think is fabulous in Stafford if you don't mind driving! Mind you I've only been seeing him for a month or so, but I really appreciate that he welcomes (and expects even) the patient to be informed and do research. He is the doc that after 10+ years of no one being able to find anything "wrong" with me immediately honed in on food being my problem. He is a Family Practitioner, but specializes in hormone imbalances and allergies. He listens (both appts. I've had w/ him so far have been about 30-50 minutes with him talking to me and educating me in the exam room, and I always leave with a book that he would like me to read (which I appreciate). He also is very great at email communication, and expects that you email him (and he will email you to check on you). He wrote a book (self-published) that he gave me on my first visit, and the end was very revealing to me....his thought is that if your doctor does not immediately know and picture who you are when hearing your name, or upon getting a call from you then you don't see your doctor enough! This guy, imho, is very different than any other doc I've ever seen, and although not for everyone I'm sure, is exactly what I expect when I see a doc rather than the more clinical, quick in and out without really listening to you kind of doc that seems to be so common now days. If this guy interests you send me a PM or email, and I'll forward the info on. I should add that although he has run the Celiac (along with other) blood panels, he has referred me to a GI doc to have an endo done to look for Celiac along with a few other things that could be my issue.
Thanks so much for your help! After I did some reading around here I realized that I might have been cc myself by using wooden spoons and non-stick cookware that have previously been used with gluten containing foods (washed afterward of course).
This is such a learning process with a huge curve it seems! I'm still trying to find out if you can get glutened from eating grain-fed chicken or beef. The last couple of days I've stuck with wild-caught fish and feel pretty good, while when I was eating chicken and beef I was beginning to be convinced that I was allergic or intolerant to anything because there seemed to be no pattern to what I was eating and how I felt. I know it will get figured out, but sometimes I feel like there must be an easier way! LOL Honestly, I don't know if I want my blood work and biopsy to come back positive so I know what the problem is and know how to fix it, or whether I want them to be negative because it would otherwise be such a pain to deal with family, functions surrounding food, learning how to eat out, and just plain changing the way I think about food (my family is and always has been food oriented).
Thank you to you (and everyone) for sharing your knowledge and being so helpful and comforting! I can only imagine that this process would be very confusing, frustrating, and difficult if it weren't for the internet allowing the connection of people. Regardless of my diagnostic and dietary findings, I feel very fortunate and blessed to know that I'm not alone in this, and I hope that with time and experience I can be just as helpful to everyone else as well!
Sorry for the late reply here--things have been crazy in my house the last couple of days with holiday company!
Honestly I'm starting to wonder if coffee isn't a culprit. Typically I feel really yucky after my first cup of coffee in the morning and start drinking tons of water afterward (don't really know if that helps), but I LOVE coffee....the taste, the smell, the warmth. I have GERD and I know that coffee irritates me in that way as well. It will probably be the most difficult thing for me to cut out of my diet, but I think it is time. I'm very grateful for your input about coffee! Honestly, although I know it makes me feel pretty cruddy I would never actually taken the plunge to delete it from my diet until you mentioned that it can pose problems for Celiac/Gluten Intolerant individuals. Thanks a million!
It is nice to know that I'm not alone! Coffee? Really? That will be a toughie for me!! I guess I'll take that out as well. I have to say that I feel very similar to you...the desire to find out what is going on with me is greater than the desire to eat whatever I want. I will say though that I got rather frustrated in the two weeks that I was trying to eat properly because just when I would have a pretty good day I would have an equally horrible one. It really made me question whether I'm going down the right path. Having you (and others) reinforce that this can take a lot of time to start really feeling better, and knowing that accidental cross-contamination can make a huge difference as well I have found a refreshed sense of hope in eliminating these things from my diet. I just have to get over the mental hurdle of making sure that I am consistent and strict during the holidays when company comes since I'm more apt to want to cater to their dietary desires (not needs). Not eating out with company will be different for my family--we are all very food oriented, but I know it will have to be done until I figure this out.
I'm glad to hear that you are doing so well since you were able to fix the cross-contamination issues!! Thank you so much for your reply--you really have inspired me!!