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To Be Nosy Or Mind My Own


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10 replies to this topic

#1 Razzle Dazzle Brazell

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Posted 05 December 2012 - 01:55 PM

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
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

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#2 Celiac Mindwarp

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Posted 05 December 2012 - 02:33 PM

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
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#3 Razzle Dazzle Brazell

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Posted 05 December 2012 - 07:02 PM

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
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#4 JDThornton

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Posted 06 December 2012 - 05:39 AM

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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#5 Celiac Mindwarp

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Posted 06 December 2012 - 06:34 AM

Yes looks like you know what to do
Good luck, what an asset to have your knowledge in the family.

Sending good wishes
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#6 guest134

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Posted 06 December 2012 - 10:56 AM

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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#7 Razzle Dazzle Brazell

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Posted 06 December 2012 - 10:33 PM

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.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#8 Razzle Dazzle Brazell

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Posted 13 December 2012 - 05:39 AM

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?
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#9 Celiac Mindwarp

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Posted 13 December 2012 - 09:26 AM

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
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#10 guest134

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Posted 13 December 2012 - 03:29 PM

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....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.curecelia...es/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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#11 Razzle Dazzle Brazell

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Posted 14 December 2012 - 01:15 PM

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.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.


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