Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What About Remission?

seattlecdfriend

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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 ?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Bebygirl01's topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...
    2. Bebygirl01
      - Bebygirl01 posted a topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...
    3. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than ...
    4. knitty kitty
      - knitty kitty replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1. Thiamine is needed in the immune response and production of antibodies. Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease. Thiamine can be destroyed by sulfide...
    5. knitty kitty
      - knitty kitty replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      Increasing symptoms after going gluten free

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,005
    • Most Online (within 30 mins)
      7,748
    anjie patterson
    Newest Member
    anjie patterson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
×
×
  • Create New...