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What About Remission?

seattlecdfriend

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seattlecdfriend Rookie
seattlecdfriend
Posted

My friend has also had a time of remission, so she has been on a "modified" diet since then. Anybody else?

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AndreaB Contributor
AndreaB
Posted

There is no such thing as remission. If your friend has been diagnosed with celiac disease or gluten sensitivity/intolerance than he/she is always going to cause some damage to the body if gluten is ingested. It may take some time for really obvious symptoms to occur but damage is being done.

Your friend needs to be gluten free for life. No ifs, ands, or buts about it.

Your friend is setting himself/herself up for other autoimmune diseases including cancer and possible neurological problems.

2kids4me Contributor
2kids4me
Posted

It is a misconception from years ago that there is "remission". Once a celiac always a celiac.

Some people may not show outward symptoms but the damage is being done to the villi if gluten is ingested.

I think the misconception stems from the lack of outward symptoms - they don't have stomach aches or diarrhea - so it must be better right? But then they get achey joints, fatigue, headaches that they may not associate with ongoing damage. Plus as stated above - eating gluten becasue you think you are in remission sets the stage for additional autoimmune disease

penguin Community Regular
penguin
Posted

I like to compare celiac to type 1 diabetes. In both, the body attacks it's own tissue, and in both, lifetime maintenence is required.

Just like a type 1 diabetic can't go into remission and never have to take insulin everyday, a celiac can't go into remission and stop eating gluten-free. The gluten-free diet is a celiac's insulin.

(sorry to all of you that have to deal with gluten-free and insulin :unsure: )

jayhawkmom Enthusiast
jayhawkmom
Posted

I had digestive and gastro issues as a child.

Once I hit my teenaged years... they stopped.

Then I had kids, and they started again.... worse.

So, I believe there IS a period of remission. But, if you KNOW you are not supposed to eat Gluten, it's not license to go ahead and start. I had NO idea...due to the fact that my parents didn't bother to pursue any issues to try and get me healthy again. Ok, I have issues! =)

seattlecdfriend Rookie
seattlecdfriend
Posted
  • Author

Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

Pondering the next step... ;)

jenvan Collaborator
jenvan
Posted
Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

Pondering the next step... ;)

That's hard... Telling her the truth in a graceful way is usually the best thing to do. What about still being friends, but letting her know you can't share in her food b/c _____ and that you will be providing your own ?

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CarlaB Enthusiast
CarlaB
Posted
I had digestive and gastro issues as a child.

Once I hit my teenaged years... they stopped.

Then I had kids, and they started again.... worse.

So, I believe there IS a period of remission. But, if you KNOW you are not supposed to eat Gluten, it's not license to go ahead and start. I had NO idea...due to the fact that my parents didn't bother to pursue any issues to try and get me healthy again. Ok, I have issues! =)

I think it's common for the symptoms to stop during the teenage years, but the damage is still being done.

Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

Pondering the next step... ;)

Joint pain in the hands and knees was one of my main symptoms as was "brain-fog." That shows that your friend is having a reaction.

You are a very good friend ... I definately wouldn't support your friend in eating gluten, but I wouldn't avoid those situations either. Tell your friend what you've learned, then in each of those situation, nothing will need to be said. Never provide glutenous foods for your friend ... you might even go so far as to not eat gluten around him/her and provide a gluten-free alternative for both of you.

Continuing to be there for your friend may supply the support he/she needs to be gluten-free. It's difficult to be gluten-free in a gluten based world!

jerseyangel Proficient
jerseyangel
Posted
I think it's common for the symptoms to stop during the teenage years, but the damage is still being done.

Yes, the symptoms can wax and wane over the years--some of us who had it for many years prior to Dx can look back and remember periods of time where we were symptom free.

For me, it was the teenage years, up to my late 20's. I also had periods of feeling well after being given Decadron (long acting steroid) injections for "inflammation"--in my 30's. That effect, of course, was only temporary since no one knew what the underlying problem was.

Even though the *symptoms* may abate, the disease never goes away.

jenvan Collaborator
jenvan
Posted
Even though the *symptoms* may abate, the disease never goes away.

Good way to sum it up !

Jestgar Rising Star
Jestgar
Posted
My growing difficulty now is my friends denial,

I have friend who's doing the same thing and I am very open about the future dangers of untreated Celiac and casually mention them, or at the very least, raise my eyebrows when she has a beer.

I doubt she will ever take her health seriously, for a variety of reasons, and so my choices are:

1. keep being mildly annoying and hope she'll clue in

2. give the big lecture whenever I see her doing something inappropriate

3. shut up and let her live her own life.

and I guess I'm doing some combination of all three. I don't know what else to do.

KaitiUSA Enthusiast
KaitiUSA
Posted

Some people may have symptoms at one point and then not at another point but there is no such thing as remission. If she/he is on gluten now...they are still doing damage to their bodies.

seattlecdfriend Rookie
seattlecdfriend
Posted
  • Author
I have friend who's doing the same thing and I am very open about the future dangers of untreated Celiac and casually mention them, or at the very least, raise my eyebrows when she has a beer.

I doubt she will ever take her health seriously, for a variety of reasons, and so my choices are:

1. keep being mildly annoying and hope she'll clue in

2. give the big lecture whenever I see her doing something inappropriate

3. shut up and let her live her own life.

and I guess I'm doing some combination of all three. I don't know what else to do.

Bottleworks on 45th is scheduled to have gluten-free beer some time in October... I relate to the choices, just wish there were more persuasive ones.

She just got the Dummies book from Barnes and Noble. Couldnt get beyond the intro..

Thanks...

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      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
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