• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • 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?  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
0
Razzle Dazzle Brazell

To Be Nosy Or Mind My Own

Rate 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

Yes looks like you know what to do

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

Sending good wishes

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

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

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

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
      108,911
    • Total Posts
      943,454
  • Member Statistics

    • Total Members
      67,049
    • Most Online
      3,093

    Newest Member
    lsmh5173
    Joined
  • Popular Now

  • Topics

  • Posts

    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
    • I've actually been glutened by shampoo with hydrolyzed wheat protein, and I wasn't even the one using it. It was my husbands! I swear I don't go around eating my husbands hair.  I am pretty sensitive though, so it's entirely believable that the trace amounts in his hair were getting onto his and my hands and then making its way to my mouth, etc. etc.  It was a slow and steady low grade glutening that eventually built up to something that I was able to recognize as more definitively "a glutening". Once we ditched the shampoo and I recovered, I realized that I'd been feeling it for weeks.  It's going to depend on your level of sensitivity, but even if you don't feel it, it could still be doing damage. Also... I second that. Starch is a carbohydrate, protein is a protein (obviously), there is no simple process that would convert one into the other. Also, as gluten is a protein, converting starch to protein wouldn't be expected to do anything to gluten ANYWAY.  Speaking as a biologist here. I call poppycock. 
    • I just want you to remind you that I just had a repeat endoscopy last week after my diagnosis some five years ago.   Even though my antibodies are still elevated, my intestinal tract has healed.  But why have I been feeling sick?  I have chronic gastritis.  Who would have guessed?   I do not drink (rarely), take any meds other than my thyroid replacement, and do not have H. Pylori.  That leave autoimmune as the most likely culprit.  I also have some other minor issues that I think is related to Hashimoto’s.  So, I am in an autoimmune flare-up, but celiac disease is not the cause of current my woes. My endoscopy results have validated that I have been doing a good job about avoiding gluten.  I can relax a bit now!   I think because the treatment for celiac disease is a burden placed on us, it can become overwhelming.  Sure, we all eventually master the diet and most of us go on to lead plain old normal lives, but if something is off, celiac disease is the first thing that many of us blame.  Actually, we blame ourselves, to be honest.  We have to remember that we are often dealing with other health issues too.   As far as hair, I buy gluten free shampoo.  It is from Costco and it says it right on the label.  Nice and inexpensive.   Do I really need it to be gluten free?  No.  I think the last time I swallowed shampoo, my mother was most likely bathing me and I did not heed her warning to keep my mouth shut (baby shampoo may not sting your eyes but it tastes awful!).   Like you, sometimes I think it helps to have one less thing to think about and that can be priceless.           
    • https://www.twinings.co.uk/hot-chocolate-coffee-other-drinks/hot-chocolate-and-malt-drinks/twinings-swiss-chocolate-drink Have discovered this drink - it's great, labelled gluten free and is also fortified.   I can't drink too much milk as I get bloated, but find it tastes really nice even made mostly with hot water and just a small amount of milk.  Thank you Twinings.
    • Ennis_TX, thank you for your response! I will take heed of all your nutritional pieces of advice, one by one. And yes, I am aware that a gluten marathon is on the horizon soon.   Before doing the test, however, I shall try to fortify my diet with the nutrients you mentioned, and report back in a week or two.   I think adding some iron supplement is wise too.    
  • Upcoming Events