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 believe a lot more people have it than they think, but because some have few to little 'noticeable' symptoms it isn't even considered! Some physicians, believe it or not, no very little about the disease or understand it!
You can always try to call around about your situation and find out who would be willing to look into your situation and do the testing. Since you have no insurance, do you not qualify for any aid from the state? The only other option would be for you to go gluten free until you get a job again then reglutenize yourself and get tested.
You have to take care of yourself mentally though do you can get your life back on track. Once you do that, everything will work itself out! If you can accept that this may be what you have, you can work from there and things will improve, but you have to stick with it. Without an official diagnosis, I personally would have a harder time sticking to it since no one has actually told me I have it. You have to make the decision from the beginning that you aren't going to do that until you can get tested. It should be easier if you see improvements with the diet....... Oh and I would start with gluten first.... If you start getting rid of soy and diary and gluten all st once. You won't know what is actually doing the trick!
Find a good doctor ( not necessarily someone you would just go too on the dour if the moment for the flu)!!! Tell him/her your concerns and symptoms and ask for a full celiac panel. Go from there. You are ahead of the game with the realization that food may be making you sick! I believe once you can accept that the rest will be a piece of cake. It will be difficult at first ( you are learning how to read labels doing research) but after a month or so it will be so much easier. Start out first with food you know have no gluten.... Salads, meats, rice, orators, fruits .... Ease yourself into products that are labeled'gluten free'.
Oh and I forgot... At my sons first dr appt since his diagnosis ( he goes every three months because of his ADHD) he grew 3cm ( this was a month and a half after his celiac disease diagnosis) and his BMI had jump back to above normal. His BMI had started to drop in the prior year .... Even though he was gaining weight... And the celiac disease explains why!!) she was amazed at the difference a short period of time made in his growth!
On the hubby, no he hasn't been back to that dr because he hasn't been having any trouble in that area. He's has gained weight and has had no pains or other bathroom issues. In fact, according to my husband, he hasn't had any D since he started the diet. He goes to his diabetic dr every three months ( or more often than that -- he has had T1D for 35 yrs) and he has had extensive blood work each time, and do far no levels of any kind have come back concerning. I don't think they check antibodies though. He has no stomach aches, no gas ( never points anymore in fact), no weird colored poop. He was told that he would heal ( it is obvious he has because he has gained weight he never gained before because he wasn't getting all the calories he needed because his food wasn't being absorbed in his intestines), but that it may be more than a year or more before he was completely healed. He is doing well--- I hope I haven't jinxed him now!
My son- he doesn't look Celiac at all!!! It really was just a chance thing that we had him tested. I could of ignored Glenn's Dr and said 'he has no problems, he's fine', but I didn't. This past summer at his 9 yr physical we ( his ped and I )decided it would be best to check him. She totally agreed that he should be checked regardless of symptoms! She spoke of lymphomas and other problems that arise from untreated celiac, so we had no problems there. His antibody level came back a 25 ( a little above where they start to get concerned-- his GI said they begin to worry at anything over 19)so we were sent to a pediatric GI. He looked at him and said... No he doesn't look celiac. My son is solid not skinny at all. He said because he has some risk factors ( my husband, blonde hair, fair skin ... There would be a chance but he said only 10%). He said that some antibody test are not accurate so he did a more extensive test. This time his levels came back at 65. It was about a month and a half later - I don't know if he ate more gluteny items before that test or just because some time had past but regardless it wasn't a good sign. They scheduled the endoscopy for a week later. That went well. I was scared or course, but it needed to be done. His pediatric GI will not do an official diagnosis without the biopsy. I was no more scared than when he had his tonsils out!! Sure enough he had silent celiac sprue( no obvious symptoms with intestinal damage). As I said the doctor was surprised. He had partial atrophy. The doctor explained the villa like this ( which is probably because he is dealing with kids- adult drs probably font feel the need to explain it as well). The villa are like little fingers. Normal villa pick up the nutrients like fingers would and andorb them into your system. Skylar's villa were "chopped" off a little so they couldn't pick up the nutrients as easily- kind of like if you chopped half your fingers off-- it would be more difficult to pick up things. Basically after that that was it. We started the gluten free diet and we are due up for our first antibody test in February. He requested that his pedatrician do an antibody test every six months for now but said unless we were having issues he would see he wouldn't need to see him again. He has done really well on the diet. He is very concerned about eating things he shouldn't ( I think the drs said cancer one too many times to him). Every once in a while he will eat a snack at his after school program that he fist realize he could have ( like lays BBQ chips) but we talk about it and he now knows those things are off limits. He is 9 and is just learning about what he can and can't have... So there will be a learning curve. He had his Christmas party at school and he are very little ( the room mom told me this) because he was so uncertain about what he really could and couldn't have. This is a good thing I guess but it still made both of us feel bad... We did have things for him, but since I wasn't there to help he didn't want to take a chance. He is a trooper and has been really mature about it. Every once in a while he'll say. I miss burgers, zaxby's , etc. but then we talk about it and what could happen and he is fine!
His symptoms-- he had no obvious ones- if he had stomach aches he didn't realize it ( he didn't know his stomach shouldn't feel that way) no stomach issues serious at least. But once we started the diet he was a bit more perky! We thought he was calming down because he was getting older. So there were symptoms just nothing we could see. There were a couple of other things though... He has ADHD( he's been on meds since he was 5) and he has asthma..., both of those things are symptoms/ side effects of celiac disease. And we recently found out that he has a possibly learning disability in reading ( another side effect) his overall iq is 118 but his reading comp and memory both scored a 92 ( 20 pt difference signals LD--- but the psy at his school doesn't diagnose with just that ( I work at a school and my psy looked at results and said that he does have one--- so right now we are just monitoring and understand that he will probably not be making A's in reading. So I find that interesting. It explains a lot possibly!!
Overall both are fine, my advice to you is to insist on the testing. It is just a blood test. They shouldn't object if they really have an understanding of the disease and its genetic capacity. If they refuse, find another dr that will agree to it. Basically I would accept no. I would go in and insist upon it! I would say I want the test! It is your right to do that. You could always stoop to their level and threaten malpractice if something should happen to your child because they refused to give you a simple test. I know that sounds terrible but whatever you need to say to get those tests done. If that does work go to a pediatric GI ( if you can) and explain your situation. Surely they will test then. I would make sure it is a pediatrician or GI though. Not just some doctor that serves any person that comes off the street.
Well book two is now complete! Please ignore all my mistakes. I too did this on my phone!! 😄
Any help at all I don't mind helping. My name is Marti and my email is firstname.lastname@example.org if you'd like to email instead. Either way is good for me.
He is pretty good! It has been a year and a half since he was diagnosed. He is finally able to gain weight. He also has type 1 diabetes so we always thought that was part of the reason why he always hovered around 145lbs. Then in April of 11 he got really sick for a week. Throwing up and D. We thought it was a virus. It cleared up but then it struck again on Memorial Day weekend. At that point he was probably 130lbs ( he lost 20 lbs with first illness). This time there wasn't as much throwing up but he went to the bathroom about 20-30 times a day or more. He has every test in the book. He was even scheduled for colonoscopy when finally after three more weeks his diabetic doctor ( this was the lab he had the blood test for the GI doctor) called and said... It looks like it could be celiac. By this time he was down to probably 105lbs. We stopped weighing a week and a half prior when he was at 115. He couldn't eat anything and was basically trying just ensure. He didn't even have to take much insulin because he couldn't eat anything and when he would get low it was forever before it would come back up. We if course had to wait for the GI nurse to call but I had already done my research about celiac. When she called us finally he had pretty much begun to lose his voice. He explained his weight inability to eat anything and she spoke with the doctor and he agreed that he could start the diet. It was very scary... I'll tell you that. To this day I have never understood why they never put him in the hospital. It was terrible because I basically was watching him starve to death. Anyway. With in three days he was gaining weight and thd bathroom issues were 90% better! He had some symptoms ( minor bathroom issues he didn't think anything of, seizures with low blood sugars, and during the year prior terrible smelling gas) but nothing that he would ever go to the doctor about. His GI said he has probably had celiac for many many years! Now he follows a strict diet and weighs 185lbs! He sleeps all night long and doesn't feel as tired.
Oh and we got my son (9)checked too at the advice of my husband's GI. And sure enough he has it too. He has about three years worth of damage according to the ped. GI. He had zero symptoms that were noticeable!
Well that is enough of my book, but it is a detailed story!
By the sound of it I would say you possibly did have total atrophy. My husband got really sick before they realized what his was. He got do sick they too went ahead and told him to start the diet. When they did his endoscopy two weeks later, he still have total atrophy. The doctor said it was one of the worst he had ever seen. I am not sure he could have lived another three days if he hasn't started the diet. Be thankful your doctors were sure enough to go ahead and let you begin the diet. Most wont suggest that, so they probably already knew the damage was extensive.
This is exactly why anyone who believes they or their children have this disease should get an endoscopy ( the only true way to determine whether or not you have full blown disease)! With a DX, you qualify for a section 504. Anything you need with regard to education and maintaining your health has to be served!
Are these 'real' rice krispie treats? If so, I've never seen them. My husband makes his own using gluten-free rice krispies and different flavored marshmallows. Cheap and makes more than what you would get on a box.
No people with celiac can have certain grains. The protein in the grain sets off an autoimmune reaction which can make them very sick. Long term exposure can even lead to different types of cancer and other diseases and possible even death. If you do go grain free you need to make sure you take a good vitamin to make up for vitamins lost from not eating grains.
Tests can vary too. We had my son tested for same reason. He had NO visible symptoms... Which really just men's none that were obvious to us ( because we live with him and we just thought he was doing 'normal' stuff. The ped tested him and his reading was 25. A month and a half later, the ped GI tested him at it was up to 67. Biopsy revealed about 3 years worth of damage to intestines. After 1 week of diet, we could see a Difference in personality. He even gained some weight ( he was already a healthy weight though) and gained 3 cm ( apparently a big deal at his age) in less than three months.