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
not sure if it was coincidence or not but dinner was the only meal my daughter managed to eat a lot of and also didnt feel sick...gluten free pasta. I am going to chart what is going on for the next little bit. We are supposed to go back to the ped doc early november so I may just bring her to our family doc and ask for those blood tests. Looking at my "list" again tonight makes me wonder how come I havent considered this before??
I have been here for a while because I live a gluten free lifestyle due almost entirely to skin issues. My daughter (adopted but biologically my cousin) is 10 years old and less than the 5th percentile for both height and weight. Over the summer, she has actually lost weight which is a bit of a concern for me. It dawned on me last night when she was complaining of a stomach ache, that maybe we should look at getting her tested for celiac disease. So, these are some of the reasons why I am starting to think that maybe we should get her tested:
her bio aunt (dads sister) has celiac disease.
Her bio dad had IBS
I (bio cousin-same side of family) have DH when I am on wheat although tested negative.
Stomach aches off and on that last for a few days and then fine again for a few weeks.
diarrhea when her stomach is bothering her. (she complains after she eats and it hurts intermittently until she eats again)
Behaviour has been really not good in the last 10 months and she is a very quiet natured sweet kid (irritable, anger outbursts etc)
Seems "in the clouds" and actually looking at considering add meds in the fall but holding off because I am not ready.
less than the 5th percentil for height and weight.
Losing weight in the last 3 months and hasnt grown at all in height.
often feels bloated (most dinners)
I guess my question is, am I questioning this too much because I am familiar or do we have good enough reasons to push for testing?
I actually have a great gluten free flour mixture that I have used and the kids love it but we had company today so I didnt want to throw foreign food items her way! So far though, I feel ok and my skin has not broken out...thank goodness!
I would suggest getting your b12 checked. I am not b12 deficient but my levels are in the low range. If you have mild villi atrophy, there is a good chance you are not absorbing b12. I also take a bcomplex vitamin for energy and stress. Seems to help
So, despite working so hard for the last 2 months to NOT contaminate myself, I went and ate the little pancake cooked droplets while I was talking on the phone with my mother in law. STUPID ME! I directly contaminated myself! THe amount was minute (only one tiny little piece) but still, so much for a clean system!
Now, I will see if there are any effects from it...
about 5 weeks ago, I had some bloodwork done prior to a CT scan for Pulsatile Tinnitus and so I asked my dr if she could test for B12 as it is often related to Pulsatile Tinnitus.
Long story short, I got an answer to my PT but also found out I have "mild cerebral atrophy" which (when I looked it up) is connected to low B12. My B12 results were around 345, deficiant being 200 or less and anything between 200-400 considered questionable and most average people being above 700. So, I started taking 2000 mcg of b12 under my tongue each day plus I continued my B Complex vitamin (called B Stress free) which I was on prior to the bloodtest.
I have been feeling really blah lately...lack of energy and really tired at times. I am on summer holidays and so I thought mabye it was just finally being able to relax but i am pretty sure its not that. Sometimes I feel totally fine and other times, just so drained.
I have been away for a week or so but I am glad I came back to read! I will make an appointment tomorrow to see my doc this week. I am usually really good at asking questions but she skipped over the "mild cerebral atrophy" line and went straight to the actual cause of the pulsatile tinnitus, which she didnt even understand! I cant seem to find a whole lot of info on it either so I hope that the ENT doc has some answers.
I did read, though, that low b12 can be the cause of cerebral atrophy. I am taking 2000mcg of b12 per day and am going to ask to be retested to see if my numbers have come up.
THanks for your words about asking questions...if only I had time to fill you in on my experience with my current doctor (who is NOT dealing with my now) regarding me asking questions...that was a case of me knowing more than her and her not accepting that very well. I am not a pushy person but I broke down and told her I am tired of being told to suck it up...it did get me a CT scan which DID get me a starting point.
so sorry that you had to deal with that outbreak! I totally connected with you when you talked about prednisone because I marched into my doc after 3 months of an outbreak and was willing to take anything that would possibly work. Prednisone was at the top of my list but at the bottom of my dr so I dealt with it for another 3 months before it finally cleared up. Glad that you finally have a diagnosis. I know for me, there were times where I would break out when I would eat gluten and then other times where things seemed fine so when I was trying to figure it all out, I wasnt sure of anything anymore. I am now gluten free for 6 weeks and not a rash to be found on my body. I know that I have been cc'd once or twice and within 2 hours, I am itchy from head to toe but it hasnt seemed to take hold and break out in a full blown DH rash but rather just itchy like an allergic reaction and then subsides through the night.
I would have stopped but I actually only asked for the B12 blood test on my way to the clinic prior to my CT bloodwork. I am going to increase my B12 fthrough supplements and see if I notice a difference of any kind.
BTW I think I ate non gluten free soy sauce last night. I broke out this morning in various itchy spots. Holding onto hope that they dont progress to a full blown DH breakout.
Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year!
Anyways, CT scan results:
-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system.
ok back to CT results:
-enlarged jugular bulb
-rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.
any insight??? So weird, so rare and so confusing!
ok so I also have the forehead bumps! I have never had an acne problem or a blemished face but for the past couple of months, I have had a really bumpy forehead. Not itchy or painful but noticeable to touch. My daughter even asked me why my forehead was so bumpy....oh the joys of sorting all of this out!
Glad to hear you are feeling ok today. I just made a gluten free yummy pizza and at times like this, I think I can handle gluten free easiy. Its when I am stuck having to eat out that I curse the gluten free life!
I actually only got the message last night. I will make the appointment today and who knows how long it will take to get in.
I have to ask, does anyone get rough, bumpy skin in spots? I have had this on my arms off and on for a very long time. It seemed to have cleared up but lately (the last week or so) it is back. ALso, my head has been so, so itchy in the last week. I don't know if there is something I am eating that is contributing or what but it certainly is not better than before, like the rest of my rashy body!
CT scan...done yesterday. They said it would take a couple of days to get back to my doc. GOt a call today wanting me to go in to go over the results. Now I am scared. They dont ever seem to call unless there is something to report but maybe because its a CT they would? ANyone have any thoughts on this one? Should I be worried??