CeliBelli
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Ugh... That is SO TERRIBLE! I can't believe your friend would do that... unbelievable!
I'm moving to Georgia to be with a friend... he's SO nice. He's really caring and kind. Glad to finally be around that.
I'm glad to hear that you got out of that relationship though. Sigh, some people are just messed up.
Medicines don't usually help me. I dunno. I might have to get a prescription something if it continues. I've been laying in bed for about 3 hours... no sleep. Going on 2 hours now. So weird. I hope it kicks in for you soon though and you can get some sleep! Sleep well when you do.
Thank you though, for all the kind words. I'll keep trying. (= It'll get better with every passing day, I'm sure.
Lycopene,
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.
Good luck, and hang in! Things will get better.
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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:
https://www.celiac.com/authors/45/Dr.-Scot-Lewey
Good luck!
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Peggy,
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:
https://www.celiac.com/authors/45/Dr.-Scot-Lewey
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.
Good luck!
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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.
Good luck!
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I think it was this test: Anti-Tissue Transglutaminase (tTG-IgA). Does that help? The doctor said that normally two have to show up positive but only one was. She ordered the biopsy and said that there was an 80% chance it was celiac. Any idea's?
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.
Good luck!
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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.
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Here are the results:
Gliadin IgG/IgA Ab Prof, EIA
Deamidated Gliadin Abs, IgA 4.0 U/mL Limit: 0.0 - 10.0
Deamidated Gliadin Abs, IgG 0.9 U/mL Limit: 0.0 - 10.0
Endomysial Antibody IgA
Endomysial Antibody IgA Negative Negative
Can someone help me understand what this means? Does it mean I don't have Celiac? I feel so much better on the diet, I'm not planning on going back to eating gluten. But I'm curious if I can have Celiac with test levels like this. Thank you for any help.
Shaunta
Shaunta,
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:
https://www.celiac.com/authors/45/Dr.-Scot-Lewey
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.
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I am desperatley searching for a pediatric celiac specialist in Orange County
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
(949) 389-9409
Good luck!
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I was just recently diagnosed and I am a little in shock. From what I have read on the web, you need to change
everything from food to makeup to medicine. Does anyone know if there are doctors that specialize just in Celiac Disease and if there are any in the Austin area? I need more answers than my GI doctor gave me.
VBedford
Vickie,
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.
CeliBelli
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ABQ,
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.
Good luck, and hang in there!
CeliBelli
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If I had waited for a diagnosis based on blood work I would be dead now. Without positive bloods the endo was never considered even though I could have been a poster child for celiac. If I relied on gene testing I would by now be in a wheel chair still pumped full of drugs since my celiac gene is considered one for RA here. Unfortunately there is a great deal to be learned about celiac disease....
The truest test is the diet until the mucosal rectal or oral challenge starts being used. But wait they don't like that one because it is too often postive and can diagnose us before we are almost dead, ie. total villi destruction.
Raven,
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.
Celibelli
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The diet IS a test - not guessing.
False negatives on the blood tests are almost unbelievably common & numerous studies show this.
The genetics aren't yet fully understood.
Endoscopies are hit-or-miss.
Am I out of line to assume you found a good Dr w/out going through many years of misdiagnosis?
Isn't the average time to dx still ~11yrs?
Yes, you would be out of line.
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?
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Sorry, I disagree. It doesn't take 10 minutes reading these pages to come to the unmistakable conclusion that current tests are useless. Otherwise, how could the celiac diet be producing these astounding results in people who test negative?
The question is, do you have the disease characterized by wheat making you ill? And the answer is supposed to come from a panel of tests?
Your doctor is correct. Try not eating wheat. If the diet works, then you have whatever you call that disease where eating wheat makes you ill.
It's called celiac disease.
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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.
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....Thing is, Im concerned i might have it and he now wants to do the full Celiac Test Panel, but wants me to do a gluten challenge for up to a week and then run a bunch of tests. I'm really concerned about the effect this will have on my body but I also want to know once and for all. Any suggestions?
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.
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....So, has anyone else had swelling issues? Is this a real possible symptom of the disease? Am I right in figuring my course of action? Or, should I give the diet more time to see if the symptoms I do have subside?
Yes, absolutely. Other people do have it, and it is a telltale sign of Celiac Disease. I have been dealing with this in my hands and feet for years, and was finally diagnosed this December, after going to the next county to find answers when my ankles started swelling and I intermittently lost sensation in my hands, arms, legs and feet. That was all in addition to the abdominal pain and chronic sinus and ear infections, none of which I connected together. I am still in the healing stages and am currently dealing with a particularly bad round of swelling in my hands. Bad enough I had to take off my wedding band because my joints are so swollen.
The swelling is related to malabsorption and consequent vitamin deficiencies. You can treat that with vitamin and iron supplements while you sort out the rest. Based on all the best scientific advice I've read, from the National Institutes of Health (NIH) on down, you should absolutely NOT go gluten-free until you've had the antibody testing and the endoscopy. It is absolutely necessary for your body to be in full blown reaction to gluten to get accurate and complete results. I had the Prometheus company's Celiac Plus tests, which include both the high sensitivity antibody and genetics tests. I also had the endoscopy and colonoscopy done at the same time. The preparation for it is worse than the procedure, but it is worth it to get a complete understanding of the extent of the intestinal damage and to check for bowel cancer, which is higher in Celiacs.
If your doctor isn't keen on the testing, press them for it. Arm yourself with information from the NIH and insist on getting properly diagnosed. This is not a disease to be guessed at, particularly since it is genetic. If you have it, you want to know conclusively, and you want to be able to tell your blood relatives, too. If necessary, call you insurance company to get pre-approval from them, if that is possible.
Good luck. You are not alone.
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...I went to somebody who practices Chinese Medicine and he suggested Enterolab and US Biotek. We have been gluten free for 3 months and today I went to a GI. I wanted to know if we have Celiac or not. Enterolab said we don't have the main gene but we do have two of the secondary gene that could indicate celiac disease. The GI Dr. said Enterolab was a waste of money and to go back on gluten for 6-8 weeks and then she would do a blood test and then possibly a biopsy....I don't know who to believe. According to the Enterolab and US Biotek it is imperative that we stop eating gluten and dairy. Please advise.
I was just diagnosed in December via two Prometheus tests (antibody and genetics) and endoscopic biopsy, which are also crucial. From what I've read, that is the gold standard for diagnosis, and it does require being on gluten so the tests can pick up the full level of your body's reaction, since healing begins and the antibody levels drop very rapidly once you go gluten-free. You will also want to ask for full blood chemistry and checks for vitamin deficiencies, too, so you know what specific nutrients may need to be supplemented.
Why is this so important? Because the gluten-free diet is not easy, as you've already found, and it is for life. You want to be as sure as you can be that this is, indeed, Celiac Disease you and your family have, before undertaking such dramatic, permanent dietary changes. Also, you want to make sure you establish baselines so you can compare apples to apples later to track recovery. The endoscopy is crucial to determine the extent of intestinal damage, and to check for bowel cancer, which is higher in Celiacs.
Having all this very well documented is important, because Celiac is a very complicated disease, with many varied and potentially serious complications. If you have definitive diagnoses based on the best diagnostic methods, it could make a difference in the future as you navigate healing all the damage throughout the body. It is hard enough to get doctors to believe and understand, having medically respected tests in hand may help. No guarantee, but it may help.
I don't envy your decision. But there are sound medical reasons why your GI is asking you to do this.
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So....Between the GI Dr, my family Dr. and the Surgeon, I'm totally confused. All I know is to be gluten free. Can anyone provide any suggestions or know of any Dr.'s in the Detroit area (maybe I'll travel if I have to) that can clear this up for me. I would sincerely appreciate it.
GO RED WINGS!!!!! Sorry, had to throw that in.
I'm not a doctor, nor do I play one on TV. But I've also just been diagnosed in December, and am dealing with an array of Celiac-related problems. I am amazed daily at how delicate our body chemistry is, and how very badly messed up it can get from this disease.
If I were in your position, I would try treatment for Celiac Disease for several months before having surgery. You may find that not only does the abdominal pain resolve, but the gallbladder function may resolve as well. It may take some time, because healing your gut and reestablishing nutrient absorption takes time, but you might be pleasantly surprised how quickly your body can jump start some things.
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My doctor is of little help offering me the scholarly advice of
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I am looking for GI doctors specializing in DH/celiac in Virginia. My family doctor and dermatologist both suggested I get a GI w/u for suspected DH/celiac. So far, I've only found Dr. Sheila Crowe in VA. However, the first available appointment isn't until the end of July. Her office gave the option of seeing a Physicians' Assistant (specializing in celiac)...getting in a month sooner.
Not sure what to do?? Get in ealier with the PA or wait to see Dr. Crowe? Or, are there any other MD's in VA specializing in celiac that I should check with?
LizzieO
I googled Dr. Crowe, and I recommend you do, too. Summary of her presentation to the Charlottesvilli Celiac Support Group can be found here:
Open Original Shared Link
If I were you, I'd call them back first thing in the morning and schedule with her PA (physician's assistant) at the next available opening. The PA should be able to take your history and get the ball rolling with all the necessary lab work you will need to begin diagnosis. If you need to see Dr. Crowe, they will be able to arrange that, probably sooner if your labs come back strong for celiac.
From what is on the internet, she looks like a gem. Please let us know about your decision and your experience with her.
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I am a recently diagnosed celiac looking for an active support group for adults in or near Riverside, California. Any help will be greatly appreciated.
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Hi, I know that my husband is gluten intolerant. What doctor does he need to see for this? There aren't many alternative health care doctors here. He is also overwhelmed with what to eat when eating out....
Wendy,
He needs to see a good gastroenterologist, one who has treated celiac disease before. (This isn't considered alternative medicine by the way.) If you are reasonably near one of the university medical centers, you might try them. It would be worth the drive. You might also try contacting the support group contacts in your area for recommendations.
Celiac Disease Foundation: (Open Original Shared Link)
Celiac Sprue Association: (Open Original Shared Link)
If it is indeed Celiac Disease, you definitely don't want to let your husband to continue to harm himself. I went undiagnosed far, far too long, and am paying the price, as are thousands of us. Celiac is more than discomfort, it can lead to many other serious conditions, some reversible, and some not.
As for eating out, that is the toughest part for all of us. There are a few restaurants which have committed to providing a gluten-free dining experience for their Celiac patrons, but they are few. Outback is one of our favorites, and our local one is exceptionally attentive.
It isn't easy, but it is worth it. Keep trying, Wendy!
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I am a newly diagnosed Celiac in Riverside, CA. I was diagnosed at the Women's Wellness Center at Hoag Hospital in Newport Beach, CA, but need competent primary care close to home. I am looking for a new doctor in or near Riverside experienced in treating Celiac Disease. I'd be most grateful for any recommendations.
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Anyone else with celiac have swollen lymph nodes sometimes that you think are just from the celiac?
I've had swollen nodes for years, since I was kid (40+ years). For years it was mostly in my neck and groin. Several years ago I began getting deep, painful, cystic abscesses in my face. That was one of the things that finally drove me to the next county to find medical care that cared. I just couldn't stand having my face torn up any more.
Once I went off gluten, my face cleared up, and I've had hardly any abscesses. I'm just getting over a miserable round of bronchitis, so my glands are swollen somewhat, and I've got some inflammation going. There is undoubtedly a connection between the systemic autoimmune response of celiac disease and the swollen glands.
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I was told by many that I should quit eating wheat ect right now. Never touch it again. Then my doc told me to slowly ween myself off it so its not such a shock to my system. Who do I listen too??
I was just diagnosed with Celiac in December. The day of my endoscopy/colonoscopy I felt better than I had in years, despite being famished and dehydrated to the point of disorientation. Or I should say, because I was famished I felt better. I hadn't eaten gluten in two days, and already I had begun to feel better. The pain, bloating and inflammation were already receding. The endoscopy, of course, left me feeling a bit sore, as they took nine snips of my gut, but in a week that was gone and I felt great! I was glad to be off gluten cold-turkey, and haven't looked back since.
In all my research, I've never seen a recommendation to "ween" off gluten. Quite the contrary. Every encounter with gluten will create a full immune response, whether you feel it or not. And every time that happens, you are damaging your gut. The sooner you stop the damage, the more quickly you will heal.
It does take time to get used to the new diet and the new routine, but that is in the mind, not the body. If you go off gluten cold turkey, your body will likely thank you for it.
GO RED WINGS!!!!! Sorry, had to throw that in. 
Should I Even Bother?
in Doctors
Posted
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.