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Friend Says She's In Remission?

KSLMom

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KSLMom Newbie
KSLMom
Posted

A friend of mine was diagnosed about 18 months ago. We recently went out for lunch and she was eating bread and other obvious non gluten-free foods. When I asked her why, she said she was in remission and could eat wheat until her symptoms came back. Huh? Is this possible? I am waiting for test results on my 3 kids, and just thought that once diagnosed, that was it...no gluten forever. None of my business, just curious.

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Roda Rising Star
Roda
Posted

She has either gotten very terrible advice from a bad doctor or she does not understand what she is doing to her body. I hope you find out what you need on your kids. Hopefully someday soon she will realize what gluten will do to her again and stick to it. If you have celiac then you need to be gluten free for life.

Lisa Mentor
Lisa
Posted

A friend of mine was diagnosed about 18 months ago. We recently went out for lunch and she was eating bread and other obvious non gluten-free foods. When I asked her why, she said she was in remission and could eat wheat until her symptoms came back. Huh? Is this possible? I am waiting for test results on my 3 kids, and just thought that once diagnosed, that was it...no gluten forever. None of my business, just curious.

I am in remission as long as I maintain a 100% gluten free diet.

If I ate gluten for an unknown period of time, I would be sick again, destroy my intestines, risk malnourishment and it's unfortunate collateral damage.

Your friend is deluding herself, I am afraid.

elle's mom Contributor
elle's mom
Posted

Your friend is deluding herself, I am afraid.

Agreed. This is so sad because either 1. she actually believes this, then she is terribly misinformed from someone who doesn't know what they are talking about or 2. she just isn't following the diet and making excuses.

The bigger problem than just your friend and her health is that either way, she's passing on bad information. Those uninformed/unaware of the severe effects of gluten are likely to actually believe something like this and wonder if anyone really has to stick to the gluten free diet. Then the rest of us who are breaking our backs to stay gluten free have to explain to (or take criticism from) people that there are not shortcuts, there is NO cheating, and YES any little tiny bit really does matter. This is flawed in so many ways it is just so sad. I think you should set her straight.

I had something similar happen to me last summer, although I was not in direct contact with the person. We were at a bbq at my uncle's and I was reading the ingredients on some burgers he was grilling before giving them to my daughter. My uncle noticed me and then he goes into this spiel about "his friend" who he goes fishing with having issues with gluten but "as long as he takes his medication before/after he can eat whatever he wants". I asked for the man's name and phone number but never got it; same type of thing though. Like I said, the bad part is that my uncle actually believed there was some such medication and wondered why I didn't just have my daughter on that rather than worry about the ingredients in everything she eats. So much education and awareness is needed.

Maggie Mermaid Apprentice
Maggie Mermaid
Posted

Well, no, I'd never heard of that. Frankly, she should be aware that silent damage could be occuring while she's knowingly eating gluten.

sannep77 Newbie
sannep77
Posted

A friend of mine was diagnosed about 18 months ago. We recently went out for lunch and she was eating bread and other obvious non gluten-free foods. When I asked her why, she said she was in remission and could eat wheat until her symptoms came back. Huh? Is this possible? I am waiting for test results on my 3 kids, and just thought that once diagnosed, that was it...no gluten forever. None of my business, just curious.

Also some people have celiac disease, but they have no symptoms at all, but the same damage is being done to there body as it is to someone with severe symptoms. You should tell your friend to talk to a specialists in celiac disease if she really does believe that. So even if she doesn't have symptoms for 10 years, the damage is being done and all the complications of celiac could happen to her. It is dangerous. It never goes onto remission and you have the disease your whole life. Gluten free is a lifestyle change, because you can never go off of it. I hope she listens to you!

camprunner Apprentice
camprunner
Posted

Agreed. This is so sad because either 1. she actually believes this, then she is terribly misinformed from someone who doesn't know what they are talking about or 2. she just isn't following the diet and making excuses.

The bigger problem than just your friend and her health is that either way, she's passing on bad information. Those uninformed/unaware of the severe effects of gluten are likely to actually believe something like this and wonder if anyone really has to stick to the gluten free diet. Then the rest of us who are breaking our backs to stay gluten free have to explain to (or take criticism from) people that there are not shortcuts, there is NO cheating, and YES any little tiny bit really does matter. This is flawed in so many ways it is just so sad. I think you should set her straight.

I had something similar happen to me last summer, although I was not in direct contact with the person. We were at a bbq at my uncle's and I was reading the ingredients on some burgers he was grilling before giving them to my daughter. My uncle noticed me and then he goes into this spiel about "his friend" who he goes fishing with having issues with gluten but "as long as he takes his medication before/after he can eat whatever he wants". I asked for the man's name and phone number but never got it; same type of thing though. Like I said, the bad part is that my uncle actually believed there was some such medication and wondered why I didn't just have my daughter on that rather than worry about the ingredients in everything she eats. So much education and awareness is needed.

My mother just informed me that she always figured I had a sensitivity to some type of food but "figured I'd be ok with lots of vitamins". Uh yeah so 20 years later, here I am with serious health issues. Thanks Mom.

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lizard00 Enthusiast
lizard00
Posted

I know a mother and son who are also 'in remission' and eat whatever they want. I make my usual "celiac is an autoimmune disease that never goes away" statement, but what are you gonna do? It's up to them to make their decisions. I just hope they don't get terribly ill in the process. But, as everyone else has said, they are terribly misguided.

Jestgar Rising Star
Jestgar
Posted

Celiac is an immune response, just like a response to a vaccine. When you get a vaccine, your body learns how to produce antibodies against those proteins. Then it keeps a few cells around that know how to do this. The next time you are in contact with that disease, the cells that recognize it start dividing, and also start calling their friends immediately. This allows your body to fight off the disease without you getting sick enough to recognize that you are fighting a bug.

Your body has learned that gluten is a disease that it must protect you from. You have memory cells that recognize gluten. Each time you are exposed you reinforce to your body that these cells must be maintained (you are re-vaccinating yourself).

So yes, technically it's possible to be in remission, but it would take ten years or so, with out ever ingesting the tiniest scrap of gluten. Without stimulation, the memory cells would die off and eventually you would have no more cells that are prepared to protect you against gluten.

Squirrelflight Rookie
Squirrelflight
Posted

I was first diagnosed 8 yrs ago with the blistery rash. After 2 years gluten free I found that eating gluten no longer caused the rash. After a few yrs on gluten I started itching and having a milder rash if I over did so I kept to moderation.

In Oct 09 I started having the bowel issues, followed by edema and now have a multitule of malnutrition / malabsorption issues. so the moral of the story being that even though my styptoms changed/ became milder didn't make it go away. It still damaged my body. And ignoring didnt make me stop being a celiac. I was just a celiac in denial. I'm back to gluten free and will stay so this time. Lesson learned. ;)

Lynayah Enthusiast
Lynayah
Posted

I was first diagnosed 8 yrs ago with the blistery rash. After 2 years gluten free I found that eating gluten no longer caused the rash. After a few yrs on gluten I started itching and having a milder rash if I over did so I kept to moderation.

In Oct 09 I started having the bowel issues, followed by edema and now have a multitule of malnutrition / malabsorption issues. so the moral of the story being that even though my styptoms changed/ became milder didn't make it go away. It still damaged my body. And ignoring didnt make me stop being a celiac. I was just a celiac in denial. I'm back to gluten free and will stay so this time. Lesson learned. ;)

Excellent post, Squirrelflight. Thank you -- I hope your post will help many others, which means your lesson has a reason.

I am sorry you had to find out the hard way that you needed to stay gluten-free. Medical science has soooooo much to learn where we're concerned. How wonderful it would have been if someone knew how to counsel you appropriately--to warn you not to try to go back to "the dark side." All too often, we must learn the hard way, or no way.

Thank goodness you are now on the other side of things.

Squirrelflight Rookie
Squirrelflight
Posted

Excellent post, Squirrelflight. Thank you -- I hope your post will help many others, which means your lesson has a reason.

I am sorry you had to find out the hard way that you needed to stay gluten-free. Medical science has soooooo much to learn where we're concerned. How wonderful it would have been if someone knew how to counsel you appropriately--to warn you not to try to go back to "the dark side." All too often, we must learn the hard way, or no way.

Thank goodness you are now on the other side of things.

Thanks.. My doctors have tried to keep me gluten free and so has my dh. I'm just hardheaded and didnt want to give up foods I wanted. I realize now that it wasn't worth and am really feeling better gluten free. :)

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