Hi My daughter and myself were dx about two weeks ago. My stomach hurts everyday and am so tired!! Where do you start? Is there a book anyone likes. My son is also diabetic , he is tested yearly for celiac but so far it has come back negative. His stomach hurts all the time, I swear he has it too. Thanks Tara
I would start by throwing away any and all products in your refridgerator and pantry that contain gluten. I would also check out this web site. There are archives that you may search for tips. Also I would sign up for the email list that is offered there. I would reccomend once you get the confirmation email to set the list to Digest, as it is very active 10-20 emails a day, and the digest will give you one or two emails a day, much better on the email inbox.
http://www.enabling.org/ia/celiac/indexnew.html
Some good recipe's can be found at http://glutenfreeonashoestring.com/
Also for restaurants http://www.allergyeats.com/
The one rule I have is "If unsure of GF status, do not eat!"
I hope this is a good start for you, best of luck and ask as many questions as possible.
Has your son tried going on the diet? I know a lot of people who havn't been formally diagnosed with celiac but who have gone on the diet and after being on it for a few months have felt a lot better. I know its not the easiest diet to try out, but it could be worth it if his stomach is always hurting
I switched to the GF diet in January after years of false positive blood tests and negative endoscope tests. I haven't had any migraines, no stomach pain and my hair doesn't fall out nearly as much as it did.I was able to come off my migraine meds altogether.
I just kind of put myself on the diet as a trial thing. I have read a few books, Gluten Free for Dummies was helpful, and a few others I can not think of off the top of my head. I looked around at websites and my biggest help though was talking to some of my friends who have Celiac disease as well. I also went shopping at a health food store and bought whatever I could that is GF (pasta, bread, snacks, and lots of fruits and veggies). I found things that I liked.
The hardest part for me is either eating only salads or nothing at all if I am out. I always pack some GF snacks with me and eat before I go somewhere. I have found tricks and ways to turn the meals I normally loved to GF. Like anything, it gets easier with time.
As far as symptoms go, I have heard that you can have them for up to 6months to a year after diagnoses.
I would also like to add that our kitchen is not 100% gluten free. My boyfriend still eats wheat bread, pasta made with wheat flour and so on. With that said, we use two toasters, two pans to cook everything in, two peanut butter jars etc. If it can be crossed with wheat, we have two.
[quote user="tara m"]
Hi My daughter and myself were dx about two weeks ago. My stomach hurts everyday and am so tired!! Where do you start? Is there a book anyone likes. My son is also diabetic , he is tested yearly for celiac but so far it has come back negative. His stomach hurts all the time, I swear he has it too. Thanks Tara
[/quote]
My mom, my cousin and myself(I'm the only diabetic in the family) all have sensitivities to gluten, without testing positive for ceilac. That could be what is causing his stomach problems, not actually ceilac but a sensitivity to come foods.
If I eat bread more than two or three times a week my stomach pains come back(they just developed last year, and it got to the point where i had to call 911 cuz i woke up in the middle of the night in pain and couldn't get out of bed because of it!). same with beer, I can drink corona's fine cuz it's made from corn, but heavy wheat beer will instantly start to make my stomach hurt. I eliminated bread and a few other things from my daily diet that were causing my stomach to hurt and have found the stomach aches are gone or at least less frequent.
I am newly dx with ceilac myself but i recomend calling your local hospital and finding out if there is a diatician you can see or a support group you can attend. Im going to a small group meeting and they apparently tell you recipis and other things about celiac diseas.
Ok so I went to the doctors and they said that I most likely have the wheat and glyuten allegy and I was just wondering, I have no symptoms at all Im totally healthy and never feel sick. So if I do have it would I really have to go on the diet??? I mean im not having any symptoms...
~Thankyou~
[quote user="brookel"]
Ok so I went to the doctors and they said that I most likely have the wheat and glyuten allegy and I was just wondering, I have no symptoms at all Im totally healthy and never feel sick. So if I do have it would I really have to go on the diet??? I mean im not having any symptoms...
~Thankyou~
[/quote]I am just like you i dont show any symptoms of it but i have tested positive for it twice now. You are better off going on the diet weather your showing symptoms or not. Going on the diet is alot better than haveing the things in your intestines that get the nutrients your body needs getting slowly killed off to the point you dont get nutrients anymore. Im going on the diet to stop that from happeneing since im already on alot of vitamins. And from what i have been told is when you do get the syptoms there very painful.
My friend has cyliac and her blood test showed up negative, So they dont always show it. Have him go on a glyuten free diet and see if he feels better. Hope he dosnt have it.. Good luck n hope he feels better. By the way I was doagnosed w/ it yesterday n i have diabeties any good advice????
Brookel,
You may have it. The gold standard for diagnosis of Celiac is an intestinal biopsy. They take a sample of your small intestine and then can tell if you have CD or not. The blood tests that are out there are less than 50% accurate for false positives and false negatives.
I saw an interesting speaker at my area's celiac support group in May, by Dr. Kenneth Fine of Baylor University and the Intestinal Health Institute. They have developed a bowel movement test that is very accurate at dx celiac. he stated that less than 5% of celiacs are true celiac, and a majority (I don't remember the numbers) are gluten sensitive. He had many good points that he brought up and did a history lesson on gluten in the human diet from ancient times.
From their website where you can order tests https://www.enterolab.com
Can I have gluten sensitivity if screening blood tests for celiac sprue are negative or indeterminate?
The answer to this question is definitively yes. Originally screening tests for gluten sensitivity/celiac sprue consisted of blood tests against the damaging protein in gluten called gliadin (antigliadin antibodies). However, with heightened awareness of the possibility of gluten sensitivity in family members of diagnosed celiacs, or in people with syndromes associated with celiac sprue, it has become clear that not all people suspected of being immunologically intolerant to gluten have positive blood tests. This is problematic because these individuals are told outright that they are not gluten intolerant based on negative blood tests. Many times patients themselves are able to deduce that it is wheat that causes them to feel ill or have intestinal symptoms, but when blood tests are negative they are diagnosed with irritable bowel syndrome or sometimes "wheat allergy". It is not surprising to me that blood tests in the early phase of gluten sensitivity are negative. This is because the immunologic reaction to gluten begins and occurs inside the intestinal tract and not in the blood per se. For this reason, I had an idea about a year ago that these antibodies should be more frequently detected in the stool of gluten sensitive individuals rather than in the blood. This turned out to be the case based on extensive analysis of more than 500 normal people or people with various medical syndromes (including bonafide celiacs, patients with microscopic colitis, a form of colitis genetically and clinically related to gluten sensitivity, and patients with chronic diarrhea of unknown origin). Based on this research and its importance, I have brought this new test to the public directly via the internet from www.EnteroLab.com This new stool test can detect antigliadin antibodies in stool whether a person has symptoms or not. It is ideal for children who do not have to be stuck with a needle. Samples can be mailed from your home without having to go to the hospital or a doctor's office. Furthermore, you can decide if you want to be tested and do not have to beg a doctor to test you for gluten sensitivity.Thus, because the antibodies produced as the result of gluten sensitivity are mainly secreted into the intestine rather than the blood, analyzing stool turns up many more positive tests than blood tests. It is only when the immune reaction has been present for long periods of time and/or the process is far advanced that antibodies are produced in quantities sufficient to leak into the blood.
Ya I have it I was just diagnosed Monday night. Were so clueless and of course they cant get us into a dietition until July 1st.
If you havent had the biopsy done dont go on the diet or you will mess it up. If you stop eating gluten befor the biopsy the problem fixes itsef and you get a false negative but when they symptoms come back you have to go through it all over again.
Yahh myy moms making me stay on the diet only because myy blood is alottt better!!! they never did a byopsy (idkk how you spell it) all they did was the blood test and it showed positive but they said it could be wrong but my mom had me go on the gluten free diet before they ever did the byopsy soo its too late now but o well... && about the symptoms they said that they might have caught this early enougph so that I never got symptoms soo that might be why me && you never got symptoms!!