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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...