• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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

To Be Nosy Or Mind My Own
0

Rate this topic

11 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,160
    • Total Posts
      939,999
  • Member Statistics

    • Total Members
      66,143
    • Most Online
      3,093

    Newest Member
    honeyboss
    Joined
  • Popular Now

  • Topics

  • Posts

    • Pretty sure it's 12 weeks recommended by experts. Good luck to you!
    • Starch is gluten?  Ive been teaching all day and way too tired to make sense of this article.... http://healthyeating.sfgate.com/gluten-starch-same-thing-7317.html
    • I added some onion powder to my dinner today.After eating it i became curious and send an email to manufacturer.They told me its not gluten free they add starch to it.And on package it was saying we dont add anything else:( i dont have symptoms yet but they were selling a range of gluten free products so i remembered like it was gluten free and ugh im so tired of getting glutened by random and useless stuff like this i was doing great for more than a month then this happened im just exteremely sad right now Motivate me for tomorrow guys :((())  
    • Thank you both for the replies. The article is very insightful. Right now I am trying to reason with the thought of being miserable for 4-8 weeks to get a diagnosis. I feel so good right now it seems almost not worth it, but I also need to know if something is wrong and if there are potentially any other digestive system issues. I will likely go on a gluten challenge and deal with the side effects... after all, Thanksgiving is coming up 
    • Cheetah, We all have to make our own health decisions based on our individual circumstances.  There is not any “one size fits all” approach.  ☹️In your daughter’s case, she was asymptomatic.  I also would find it hard to believe that she had celiac disease despite confirmed biopsies and antibodies tests.  I get the denial.  I just had anemia that was disguised by a genetic anemia.  I was shocked at the suggestion of celiac disease.  My hubby had been gluten free for 12 and I knew exactly what the treatment meant — gluten free for life.  A total game changer.   Because we have bought our health insurance for over 20 years, we have lived through the times that I was uninsurable due to my Hashimoto’s, Rosacea and toe nail fungus (yes, that is right).    I never went without, but I could not freely jump from plan  to plan.  My premiums were higher than my hubby’s.  So, we worry that health insurance could change and I would be uninsurable again.  (Did I mention that our annual premium is $24,000?) However, the genetic test can be invaluable but is mostly used to help rule out celiac disease.  There are other genes associated, but they have not been studied well.   “So far, scientists have identified over a dozen possible non-H.L.A. genes that may be associated with celiac disease, but whether these genes actually play a role remains to be seen.”  (Sheila Crowe, now head of the American GI Association).   https://consults.blogs.nytimes.com/2010/01/13/genetic-testing-for-celiac-disease/ The antibodies test, in conjunction with the biopsies is the best means of diagnosing celiac disease to date.  The blood test is the least reliable as there are false positives (rare).    It is hard to dispute villi damage.  Too bad your Aunt did not get a biopsy, but understandably, an endoscopy can be costly if you lack insurance and there are many other reasons, so many are forced to forgo this procedure.   https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/   It is unfortunate that we must weight the risks and benefits of everything.    
  • Upcoming Events