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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

If Your Doctor Won't Order Testing...

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My mom decided to go ahead and get screened, finally. But she has Kaiser and they had to be convinced. Finally they used their screening protocol and ordered only the anti tTG IgA, despite the detailed list I had given her, with specific info on how important it was to also get total IgA for any tests that look at IgA.

Apparently, their protocol also does not allow for running the EMA, or anti-Gliadin Deamidated Peptide IgA or IgG. First they do genetic screening and take family history IF the tTG comes back positive before they will approve those tests. How much do you want to bet their genetic screening only looks for DQ2 and DQ8 and doesn't even look at HLA-DQ alpha?

Genetic screening is more expensive than the blood work. My kids were covered by their insurance for the genetic screening and we couldn't put our son back on gluten, so we did it. I did not get mine done because I was paying out of pocket and was able to extrapolate my results from theirs. I can't remember the cost, now, I think it was something like $360.

What I do know is that I paid only $169 plus a $15 blood draw fee for a combined celiac panel including Total IgA, anti-tTG IgA, EMA, and anti-Gliadin Deamidated Peptide IgA and IgG!!!

These tests can be ordered online (in most USA states) without permission from your doctor, without insurance, for a bit more than I paid through my doctor. http://www.ineedlabs.com/Product-search.html?keyword=celiac

This might be very worth doing if you can't get in to see your doctor or can't get your doctor to approve your blood tests. A couple hundred bucks is plenty, especially if you are poor like we are right now. But the costs of staying on gluten longer in hopes of a doctor finally ordering the tests could be much higher. I was surprised at how reasonable the cost was to get a full standard screening.

I have a friend who is very concerned about the cost and only wants to order the tests if she first uses up her high deductible/health care savings account and can get her doctor to order it and insurance to pay. What is her deductible being consumed with right now? A slew of medications that attempt to control symptoms which could be caused by celiac! I'll definitely be sharing the low cost of getting blood work with her, now that I know!

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rosetapper23    236

I'm sorry that your mom has Kaiser. When I asked for my son to be tested by his Kaiser pediatrician eight years ago, he told me he'd never ordered tests for celiac in his career (and this man was probably around 45 at the time), so he would need to check with other doctors to be able to order the tests. I recall that he only ordered one test, but it came back positive, so I didn't pursue any more testing. After years of being treated by Kaiser doctors who had no idea what celiac was about, I finally did some research and came up with the name of a celiac expert who worked at the San Francisco Kaiser. Unfortunately, he wrote me back saying that he no longer worked for Kaiser and that there were NO doctors in the entire Kaiser system who could be considered experienced in treating celiac. I felt very disheartened at that point. Finally, I found a doctor at the Walnut Creek Kaiser who was honest about it--he said that he had never had a patient with celiac (yeah, he'd probably had dozens and didn't know it) but that he was willing to learn. He ordered every test I wanted and ordered intravenous iron when necessary, even though he'd initially never heard of the procedure. In the end, though, Kaiser misdiagnosed my breast cancer, totally flubbed the breast cancer surgery, and then supposedly lost ALL of my medical records (probably to hide their errors in case of a lawsuit). By the way, if your mother is diagnosed with celiac and ever needs to stay at a Kaiser hospital, she should bring ALL of her own food. During the three days I was at Kaiser following my surgery, they refused to feed me anything (because of the celiac) and then glutened me with generic medications that contained gluten--they simply didn't understand that they couldn't just give me pills without checking for gluten first. My mother, who also has celiac, was hospitalized at Kaiser last year for a fainting episode. While they were doing tests, they insisted that she eat even though she kept telling them that she couldn't eat gluten. They assured her that they "thought" the food probably didn't contain gluten. They fed her a Mexican spicy enchilada, and the end result was that she became so ill from being glutened (and there is usually a heightened response to gluten with peppers), she had to remain at the hospital for another three days because they said she was too ill to be discharged. As they continued to make her sicker and sicker, she demanded that they release her. She was very ill for almost a month afterward. Anyway, I left Kaiser a few months after the botched surgery and paid an integrated medicine doctor full price until I could change my insurance carrier to Blue Shield. It was one of the best decisions I've ever made. Now, I know that this forum does not appreciate posters speaking badly of companies or products, but all of the experiences described are factual occurrences.

If your mother is retired, then I know her insurance options are limited. However, if she tests positive for celiac, the testing is only the first hurdle she will encounter at Kaiser. She will need to be her own advocate.

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How sad, rosetapper23! That is really unacceptable. I wish it didn't take such a monumental effort to mount a medical malpractice suit because your story and your mother's story definitely warrant a couple.

I actually had improved my opinion of Kaiser in the past few years. I had a friend who was a breast cancer survivor. When it came back, her doctor and many others she went to for pain misdiagnosed the return of her cancer for at least a year. When she switched to Kaiser, it was finally diagnosed. She received top of the line treatment (and participated in a study) for the rest of her too-short life.

I am appalled at the completely lack of information my mom's doctor had! My mom does not have symptoms and all her other blood work came back fine (no osteoperosis, good metabolic panel, etc), and her tTG was low. It's so frustrating that they wouldn't just run the d*** panel once she finally got around to asking for it! I'm more suspicious I got my genes from my dad, anyway. I take after him in a number of ways, including many health issues. No chance of him getting tested, though :(

Fortunately for us, my kids have CIGNA health insurance through their dad. It's spendy, but we only paid $100 when our son was hospitalized for 4 days and had to undergo orthopedic surgery on his hip, lots of labs, and IV antibiotics. The actual bill was in the $100,000 range! We can take them to any health care provider we like, and they will pay a percentage out of network. PPOs are really the way to go, IMO.

My partner and I, on the other hand, have no health insurance. Maybe Obamacare will eventually come through for us but I'm not holding my breath.

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rosetapper23    236

I'm glad your friend received good treatment for her breast cancer at Kaiser. My biggest problem with them is that they refuse to deviate from a particular "standard of care" methodology where they refuse to allow for the latest techniques and medications to be used for cancer. When I questioned my Kaiser oncologist about using alternative methods, she opened the door and told me to get out. My oncologist through Blue Shield welcomes innovative techniques and researches anything new that I suggest. He even tests me regularly for side effects to taking certain natural supplements that are standard fare in China for treating cancer. You see, my breast cancer returned a year ago (four tumors, to be exact) because it appears that the Kaiser surgeon may have missed some of the cancer. She told me that my type of cancer was hardly even considered a "true" cancer, but, rather, it used to be considered a precancerous condition. After she did her sloppy job (and failed to perform a sentinal lymph node dissection as I had requested), it turned out that the cancer was invasive and considered a rare, highly aggressive, highly metastatic, and recurrent type. Since Kaiser exhausted the chemos for my type of cancer, I'm only able to use alternative means to fight it now that it's recurred. Currently, my surgeon and oncologist both believe I'm in remission, having removed the tumors and nearby tissue....but I sleep with one eye open.

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mushroom    1,205

I used to work in medical malpractice litigation, and I have heard some hair-raisers, many involving Kaiser. I won't elaborate, but Kaiser members have my sympathies. When their care is good it can be vey good with the right doctor, but the general level stinks. At one point it looked as if Kaiser would be our only insurance option, and the one we had to select wasn't much better, but I have always avoided them. :ph34r:

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