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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

To Be Nosy Or Mind My Own
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11 posts in this topic

So my grandmother, who has diabetes and lymphoma, is finally gotten so bad with keeping food in her gut that she is being tested for celiac. I just heard this yesterday. I am somewhat concerned that the fact she has been practically starving herself for so long would mean they may not get accurate results. I am hoping and praying that the test will come back positive so that many in our family can be faced with the truth and find healing from illness, both physical and emotional. It will help me too because I was not able to gluten for testing because I developed severe acute allergic-like symptoms to foods when I tried.

I am really hoping we can get an answer for the only other one who is desperate enough and sick enough to no longer be able to live in denial. I hope to be able to help her heal and have a fighting chance. I wonder whether it would be inappropriate to ask whether they are doing a full panel and get a genetics test if it is not quite clear. At least she has insurance. I do not want to cross the line though as I still feel as if people in my family think I am some sort of fanatic. Should I mind my own business and just hope everything comes back right? hhhh

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Can you ask her directly? Does the rest of the family need to be involved? Genuine questions, everyones family is different. Could you let her know you've been finding out more and would love to talk to her about it?

I have virtually been warned off talking to my grandmother who is having blood transfusions every few weeks because her iron keeps dropping, among a myriad of lifelong celiac symptoms. Her daughters are kind of the gatekeepers of her health. I am wondering...if this kind of thing is the case for you. If not I'd probably try her out.

It is a hard one, good luck

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Well her oldest two daughters go with her to the doctor, My grandmother is almost like a big child. You have to hold her hand for just about everything besides cooking, never learned to drive or balance a checkbook and pay bills. So it is like asking her to affirm to a doctor what she wants done, she will not understand and she just would not do it. To get it done I would probably have to talk to my aunt. You know it is not just about me. I have accepted gluten free. I should not be worried about what they may say. I should do it for my grandmother. She is so sick

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I think you just answered your own question. :) Everyone thinks I'm crazy too; my own mother has mentioned hypochondria a couple times. But it's real and it's out there. You don't have to turn it into an argument; just mention the basics and suggest a full panel. Good luck!

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Yes looks like you know what to do

Good luck, what an asset to have your knowledge in the family.

Sending good wishes

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Perhaps you should try an alternate approach to talking to them? I find that often when people speak of informing their family of possible celiac they do it in a way that will naturally attract a negative response. Face it, no one wants to be told they have a chronic disease, especially if they have very little or no symptoms, so you are already working against a natural defensive barrier. Not only that, but perhaps you should be more sensitive to her lymphoma right now, going gluten free will do nothing for the prognosis, instead of pushing something else on her and causing more stress let the doctors do their thing with the cancer. Hopefully she survives and if so then it would be a good time to bring it up with your aunts and her.

Just simply don't be condescending or act as if you are an educator to them, express your concerns and perhaps show them some print outs from credible studies on family members with celiac, diabetes and celiac, and lymphoma and celiac. Calmly explain to them the appropriate tests and say let's at least rule it out so we can move on, be supportive of their concerns and once again do not be overbearing. In the end it is their lives and if they are not willing to do anything you are just going to have to drop it. Bring it up calmly and effectively, if they choose to ignore the facts then you tried and that is all you can do in the end.

Remember, they are as strongly opinionated for NOT having celiac as you are for them having it. There is a conflict here and you will have to be the better person at the end of the day, don't let it get heated and keep your cool regardless what they respond with, getting upset or emotional will do nothing to help the situation.

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Yes I hope it goes well. I am going to talk to her this weekend. I know lymphoma can be caused by celiac because it is cancer of the immune system. I am actually hoping going gluten free will help her appetite. I know that Lymphoma can sit stagnant for a long period of time. She was diagnosed late in life and will more than likely liveout her old age. So, this is why I am hoping it will bring relief rather than continuing her current diet of one kiddie meal a day not finished and then running to the bathroom. She is so bad now that she does not even want to get up off the couch for fear she will end up on the toilet.

your advice ToWorry makes good sense. I do not want to come across as if I came with the intent to wage a holy war against gluten and have her feel like I am not just concerned about her but only with a predetermined cause. I will probably go about it by just asking how she is doing and whether they found anything else. Her lymphoma has not progressed in years and she is not undergoing treatment currently, just annual monitoring.

In the end I feel she will be glad to be able to eat at all without getting sick. Sometimes you have to hit rock bottom before your willing to sacrifice some things.

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Good news. My talk with my grandmother and aunt went well. She has an older gastro.. but from the questions I asked he seems to know what he is doing. They already did a celiac panel and they are going to redo a scope for celiac specific biopsies. They have her on prednisone already though; that somewhat concerns me as her scope is not until sometime in January. Should I be concerned? At least I know they affirmed to her to continue her normal diet but what good does that do when your surpressing the immune system already? Oh, and yes she got the panel bloodwork done before starting the medicine but still. What do you guys think about the whole prednisone thing?

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Great you got a good reaction from family and that her GI is clued in - well done you :)

Can't help on the prednisone, sorry

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Looks like you are on the right track. So she has a slow progressing lymphoma, I wasn't sure as there are about 70 different kinds of non-Hodgkin's lymphoma, the aggressive versions are the most treatable and require immediate action, I thought that was the case with your grandmother. Since she has slow progressing lymphoma I take back what I said, perhaps immediate treatment for Celiac (if she has it) will in fact help her prognosis. The ongoing inflammation of Celiac would most definitely affect recovery, do you know which specific kind she has?

"Prednisone is important in the treatment of acute lymphoblastic leukemia, Non-Hodgkin lymphomas, Hodgkin's lymphoma, multiple myeloma and other hormone-sensitive tumors, in combination with other anticancer drugs." - http://en.wikipedia.org/wiki/Prednisone

Prednisone is part of the Glucocorticoids family. Glucocorticoids (GC) are a class of steroid hormones that bind to the glucocorticoid receptor (GR), which is present in almost every vertebrate animal cell.

It looks like this is your standard treatment for NHL, it is a steroid, it is very important to note that prolonged use of steroids will effect blood tests.

"Would taking steroids cause the blood tests to be inaccurate?

Yes, but only if you have been taking steroids for a prolonged period of time." - http://www.cureceliacdisease.org/archives/tag/steroids

Now this is only my personal opinion in which I cannot back up with any medical literature so don't take it too seriously, just a thought but I believe it could affect biopsies as well. The natural course of a steroid is to dummy down inflammation in the entire digestive system which in turn could make certain areas look better than they are, perhaps causing the GI to overlook the area and not biopsy it.

I can with certainty say that prednisone and other steroid use suppresses the immune system, Celiac is basically an over-active immune system as with Crohn's. If prednisone has effectively suppressed Crohn's and the associated levels of Anti-Saccharomyces cerevisiae antibodies to improve colonoscopy results I see no reason why it would not effect the gliadin peptide reaction in your body.

In my opinion, the most beneficial test your grandmother could have at this time prior to the biopsy is the associated gene testing. Let us know the results of her Celiac panel, hopefully they ran all of the tests. I am sure you already know of the appropriate tests to run.

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Well we will see. She did have the blood test done before they put her on prednisone this month. As bad as she is, I am certain that if it is caused by gluten, she must have a really high reaction and especially at her age it would take quite a while for her gut to heal. I may be wrong but it makes sense in my head that a month probably wont mean her gut will heal that much before the biopsy, especially sense she is still glutening. I had a bad experience with prednisone once and one other person in our family did too. It sent our body so far into hyperdrive and messed our immune system up so badly that we went into a psychosis and then took a long time to recover. at first it made me feel awesome but then I did not sleep for several days. I ended up with bacterial and yeast overgrowth infections. I hope my doc was just an idiot and put me on way too high a dose orfor way too long.

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. 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But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
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    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
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