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
The answer is Yes, you absolutely should get tested. For you, and for your children. The hazard of self-diagnosis is you might be wrong, and overlook another serious illness. Or you might be wrong, and unnecessarily subject your son to a life of rigorously avoiding gluten.
And as several others on this thread pointed out, there will be times when you and your son will need an official diagnosis in hand. Airlines and schools are the least of your problem. If you or your son need medical treatment, you need to know - definitively - whether or not you have Celiac Disease. To health care providers there is a significant difference between someone who says, "I have Celiac Desease," and has genetic proof on record, versus someone who simply says, "I don't eat gluten." A definitive diagnosis on record may make a critical difference in treating complications to Celiac Disease, which include autoimmune thyroid failure and certain types of cancer, to diagnosing and treating other related and unrelated illnesses.
There are two labs highly recommended, Prometheus in San Diego and Kimball Genetics in Denver, that use the most current testing technology. Both allow you to request the tests directly yourself. It is worth asking them if they have programs to help patients afford the testing, as more companies are doing this.
I definitely recommend doing it. It will give you a high degree of certainty one way or the other.
It's been a month since you started this thread, so don't know if your insomnia has resolved or not. I had increasingly severe problems with it until I was diagnosed with Celiac Disease two years ago. At the time, the doctor who diagnosed me made several recommendations to address it. First, no caffeine, at all. Second, nutrient deficiency messes up everything in your body, including sleep regulators. My doctor recommended taking calcium+magnesium supplements a few hours before bedtime. You will also want to pair that with Vitamin D to help absorb the calcium. She also recommended having a cup of camomile tea an hour before bedtime, too.
Another thing I did that made a significant difference immediately was to download all episodes of "The Meditation Podcast" from iTunes onto my iPod. It is guided visualization with binaural beats, so you must wear headphones. Several episodes are outstanding, but my favorite is "Falling Asleep." The binaural beats underneath the meditation and music bring your brainwaves into sleep mode. The first time I tried it, I was out like a light. It is only 20 minutes long, but it was weeks before found out how the meditation ends. This was an invaluable bridge to use until my body began to heal and my body chemistry began to normalize. I still keep my iPod by my bed so I can plug in on those nights when I can't sleep. They also do some excellent episodes on healing.
Biopsy is considered the gold standard for celiac diagnosis. If you've been gluten-free for five weeks, that could skew the results, depending on the degree of damage you may have had prior to going off gluten.
You may wish to also ask for a genetics test in addition to the biopsy, since that won't be affected by what you've been eating. The most highly recommended labs are Prometheus and Kimball Labs. You can find more information on the genetics testing here:
I highly recommend you get tested again, this time with the newer antibody and genetics tests from a leading lab such as Prometheus or Kimball Labs, or their Canadian counterparts. There is an excellent set of essays by Dr. Scot Lewey elsewhere on this website that discusses genetics testing, which with your family history sounds like a must. You can find those essays here:
As Rebecca's Mom said, you will stick to the gluten-free diet better if you have the certainty of a diagnosis. You may also need an official medical diagnosis in hand when dealing with doctors and hospitals in the future, since they don't give much credence to self-diagnosis.
And if you already know you have other family members with it, you will want to know whether you carry the gene(s) before you have children, if that is what you choose to do.
I agree, I will be stunned if you are not diagnosed with celiac disease. My story is also very similar to yours. The bad news is you will need to keep eating gluten until you can get tested again. I highly recommend you do this, as you will want an official medical diagnosis in hand if you can get one. You may need this dealing with doctors and hospitals in the future, as they will not give credibility to someone who self-diagnoses.
There are new anti-body tests on the market now, as well as the new genetics tests, which have higher levels of reliability and accuracy than what you likely had a few years ago. I had the full battery of tests, and tested negative on the older style tests, but quite positive on the newer tests and the genetics. You will also want to have the endoscopy done by a good gastroenterologist with experience treating celiac patients.
You need to keep eating (and drinking) gluten until all of these tests are complete so they test you in a full blown reaction, since your antibody level will begin to drop rapidly once you go completely off gluten. Don't put any of this off. The sooner you get fully tested, the sooner you can begin to get well.
The TTG test seems to have a higher level of reliability. Biopsy is considered the gold standard for celiac diagnosis, so you are doing the right thing in getting that done. If those results are also positive, your son, you, your son's other parent, and any of your other children should also have the genetics test done to determine who else in the family carries the gene(s).
Although you may have to wait a few days to get the lab results back, your gastroenterologist should be able to share the pictures they will likely take and discuss them with you immediately following the procedure.
I also recommend getting a referral now for a good dietician experienced in treating celiac children from either your doctor or your gastroenterologist. If you get a positive diagnosis from your gastroenterologist, schedule an appointment with the dietician as quickly as you can. You will need their advice and support to navigate how to raise your child (and family?) gluten-free.
My recommendation is that you knock yourself out eating all your favorite gluten foods. That's what I did in the last few weeks before my endo, which was the week after Thanksgiving 2007, because I knew afterwards I was never, ever going to eat them again. I ate at my favorite restaurants and said goodbye to pie and pizza and flour tortillas. I went home for Thanksgiving and we did all the trimmings one last time, just like when I was a kid. I hurt like hell, but I savored every painful bite.
Once you wake up from the anesthesia you may be gluten-free for the rest of your life. In these last few days, enjoy your favorite foods one last time so you can embrace your new, gluten-free life with no regrets.
Welcome aboard. I was diagnosed just 15 months ago, and I sympathize with you. Researching celiac disease rapidly becomes a crash course in immunology and genetics. I highly recommend that you ask your doctor for a genetics test, either by Prometheus or Kimball Labs, which are two of the best. There are several very good, in depth essays on genetics testing for celiac disease by Dr. Scot Lewey here:
I also recommend you ask your doctor for a referral to a good gastroenterologist with experience treating celiac patients and discuss with them doing an endoscopy to biopsy your small intestine. That is considered the gold standard for diagnosis of celiac disease. You will not want to go completely gluten-free until you have that procedure done, as you will begin to heal rapidly, as you've already learned. Given your extensive medical problems, I urge you to get all of this done as quickly as scheduling allows.
Why go to all this trouble, if just going gluten-free seems to do the trick? Because celiac disease can be serious, even life threatening, and if you do indeed have it, you want the medical proof in hand in the form of official medical diagnosis. You may need this when dealing with doctors and hospitals in the future, since they will not give much credence to someone who is self-diagnosed. The other reason is that if you are celiac, you must follow a very strict gluten-free diet, and this is not easy. It is well worth it if you are celiac; but it may be an unnecessary burden if you are not.
More importantly, if all the testing indicates you are not likely to have celiac disease, you will still want to pursue answers about what you do have, particularly if living gluten-free helps. Gluten may or may not be the culprit, but it may be a clue. Getting these answers brings burdens and responsibility, but it also brings immensely liberating relief, too.
I wish you all the luck finding answers and getting diagnosed. Hang in and persevere. You are worth it.
I very highly recommend Dr. Jolanta Lukawski, who is director of the Hoag Hospital Women's Health Center and has a private practice in Alisa Viejo. She is an outstanding physician, and if your toddler is outside her scope I am confident she can refer you to someone with the necessary skill to treat your daughter. Her office contact information is:
26671 Aliso Creek Road Suite 304
Aliso Viejo, CA 92656
I was just diagnosed in December, and understand how you feel. Unfortunately, like most Celiacs, I've found the medical community is woefully short of doctors who understand Celiac Disease, much less specialize in it. The best resource I've found on how to adjust life and cope is a book by a woman Celiac named Jax Peters Lowell entitled The Celiac Bible. With great humor Ms. Lowell goes into great deal on how to adapt all aspects of life and how to cope with grace. It was one of the first books I bought, and has been indispensable.
I was diagnosed in December at the age of 44 and years of health problems. Like others, I can attest to the mental issues that go hand in hand with Celiac. Here are a few thoughts that I hope may be of help.
First, the reason you may have tested negative on the antibody test is because you'd already eliminated the most prominent sources of gluten from your diet for a certain duration. This could have been enough to throw the antibody test off. I agree that you should seek out the genetics test. Realize, too, that not all celiac tests are of equal quality. Prometheus is one of the very best, and I can recommend it. They also have a more advanced, very high sensitivity antibody test that is highly recommended. I also agree that you need to find a good GI with experience treating Celiac. Given your history, you may wish to ask for them to do an endoscopy and colonoscopy, which is the gold standard for diagnosing Celiac.
Since you are reacting to gluten-free foods, you should know that it is not uncommon for people with Celiac Disease to also be sensitive to soy, and, like gluten, it hides everywhere. When I went gluten-free, I was also taken off dairy, so I tried substituting soy milk. I rapidly found I have just as violent a reaction against soy as I do against gluten. Now, I eliminate both gluten and soy, and severely limit dairy, and am improving rapidly.
One way I am coping with these restrictions is to avoid most processed foods and eat very elementally, and when I do eat processed foods I read labels meticulously to avoid even foods processed on the same equipment as wheat, rye, barley or soy to avoid cross contamination.
Know that if you do have Celiac Disease, it will take your gut some time to heal. I was told a year to two years. It will also take the rest of your body and mind time to heal, too. Accepting that and embracing that helps me considerably to ease the frustration and despair of dealing with the challenges of chronic illness.
That and large doses of a cross section of gluten-free vitamins. You should find a good, gluten-free under-the-tongue B-12 supplement, which will help repair your neurological system. Also, iron, E, C, calcium & magnesium, the works. If you pee clear, you're not getting enough through your gut and into your blood stream. Just remember to space them all out through the day so they don't upset your stomach.
Don't give up, and don't give in. You will get through this. Keep looking for a good doctor. If you can, you may even want to contact the Mayo facility in Arizona to see if they can help you, or recommend a doctor in your area.
I am not suggesting that people who go through all the testing, but who seem to match the Celiac profile, shouldn't try the gluten-free diet as a form of elimination testing. My concern is that there are far too, too many people on this website waving people away from getting the blood work and endoscopy done at all. And that is a mistake. If someone has been advised by a doctor to get tested, they should, and we should all support them doing so.
Because the testing coming on the market now is far more sophisticated now than it was even a few years ago, and we should all take advantage of that if we can, and encourage others to do so, too. If someone finds a doctor who has enough sense to recommend the tests, we should support that doctor's recommendations, too, because there are so few doctors that recognize the symptoms and make the right call to pursue that line of inquiry and testing.
If we want the medical profession to pay attention and support us, we must be willing to support them when they do the right thing. All too often doctors don't make recommendations when they know they should because, in their experience, patients don't take their advice, so they stop giving it. We shouldn't promote that kind of environment with Celiac Disease. We should advocate for good science so good science will advocate for us.
That said, if all the most sophisticated testing a person can get their hands on turns up negative, or if they can find no competent medical care anywhere, then trying the diet as a test can do no harm, and may do good. But, because doing a gluten challenge is so much more painful and disruptive once a person has gone gluten-free, and because the results are much more likely to be inaccurate, I could never advocate that a person try the diet first before trying the formal testing.
I am 44 years old. I've had "stomach" pain since I was 17. I've had increasing cold sensitivity and joint pain since I was in my mid-20's. I've had chronic earaches and sinus infections since childhood. Since then, I've been tested several times for Lupus, in addition to several autoimmune panels. I tested positive for sky high auto-antibodies, but not Lupus or rheumatoid, so it got brushed off as undefinable with no explanation. In response to increasingly severe and persistent abdominal pain, I had ultrasound several time to check liver and kidneys, which came back "fine." I've been shot with cortisone, proscribed prednisone, and taken an array of arthritis drugs that only made my stomach pain worse.
In time, I developed thick calluses on my feet, and then began to feel the pins-and-needles. That progressed to my feet and legs "falling asleep," then my hands and arms. Then shooting pains all over my body. I became peri-menopausal at age 40, and started hot flashes by 42. I had increasingly disturbing and embarrassing bouts of urge incontinence, which eventually progressed to bowel issues. I began losing my hair. I became forgetful, and easily confused. I could not hold an item taken out of the freezer without severe bone pain. Then deep aching bone pain became constant, and unrelated to cold. I self-diagnosed Hashimoto's Thyroiditis at age 42 based on my own research of my own lab results, and my doctor gave me the credit. He'd started the lab results in the face, signed them, and never saw what was developing.
I thought taking thyroid replacement hormones would be the miracle cure. It wasn't. Some symptoms improved, but not for long. By last year, I was beside myself. My doctor was useless. My body was failing fast. My ankles swelled. I had hot flashes constantly. I couldn't wear most of my dress shoes. I couldn't button my jeans without pain. I felt like I was losing my mind. I was short of breath too easy. I felt arrhythmia frequently. I had sinus infections for weeks on end that couldn't be touched by antibiotics. I had a a double ear infection that lasted two months, and responded to nothing. By last August, I was desperate, but didn't know where to turn. Both my ob/gyn and my primary care physician were useless.
I wound up researching the best place to obtain a digital mammogram, because in the middle of all this my ob/gyn thought he felt a breast lump. By accident, I came across the Women's Wellness Center at Hoag Hospital in Newport Beach, CA, 45 miles from where I live in Riverside. After an absolutely wonderful experience at their Breast Care Center, I called the Women's Wellness Center and made an appointment. Since they are considered "alternative" medicine, my insurance didn't cover it, but I didn't care.
I went to them and told them everything that was and had been going wrong with me for 20 years. They took lots of blood. The poked me all over, and took readings of everything. I sat in the psychologist's office, exhausted and scared, and talked and cried for 45 minutes. I want back a month later and went over the lab results and their recommendations. I was seriously vitamin deficient, had no female hormones to speak of, very high indicators of inflammation, borderline anemic, and tested positive on multiple tests for some disease I'd never heard of. They strongly recommended I see a GI.
Which I did. He retested me using the Prometheus Celiac Plus panel, and scheduled me for dual endoscopy/colonoscopy the week after Thanksgiving. By Thanksgiving Day I was in so much pain every meal hurt. But I went home to Colorado and we fixed a big traditional Thanksgiving feast with all the bread stuffing and plumb pudding I could take. A week later, the genetics tests were back and the biopsy was in done. At the age of 44, after a lifetime of chronic illness, I was diagnosed based on the antibody levels, the positive genetics, and cobblestone bunting of my villi. I've attempted to be gluten free ever since.
The Hoag Women's Wellness Center is not oriented to primary care, and the physician there is 50 miles away, so today I am without trustworthy primary care here in my home town. My physician treated me for bronchitis in April with an antibiotic that, while gluten free, messed my gut up badly. I am struggling day to day with the peripheral neuropathy, fallout of malabsorption and recovering from the antibiotics. As of today, my joints are so swollen I cannot wear my wedding ring.
There. I said it. Is that enough of a war story for you?
Or, if you don't get tested and conclusively diagnosed, you could be reacting to something else that tends to be combined with gluten, like soy. Or, you could actually have any number of other problems that won't get adequately treated.
From 10 minutes reading these pages it is evident that there are myriad reasons why peoples tests come back negative, foremost among which is the fact that they go off gluten first, then get tested, which is almost guaranteed to throw false antibody results. The other trend is that people self test with outdated testing methods.
The best medical scientists in this field, the ones who are on our side pulling for us, recommend high-sensitivity antibody and genetics testing, and endoscopy. I prefer their expert opinions over guessing.
I agree with Meline. Although it is hard to do a gluten challenge, a week is not a long challenge period. If I were you, I'd try it, since it is necessary to be in a full gluten reaction to get accurate test results. Remember, too, that the gold standard for diagnosis is endoscopic biopsy, and all the best research recommends doing this while on gluten.