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 Celiac.com!
    eNewsletter
    Donate

How Much Gluten Is Going To Set Me Back?


ip87

Recommended Posts

ip87 Newbie

So I have a kind of unique situation, but I guess everybody does, to a certain extent.  I was totally asymptomatic when I was diagnosed with Celiac Disease about two months ago.  I was skeptical at first, but, to my doctor's urging, I started a gluten-free diet.  I've been on the diet for about a month.  It's definitely been difficult at times to feel like I am missing out on so many delicious things, and causing so much hassle for the friends, family and restaurants that I eat out at, especially when I know that I could simply forgo the gluten-free diet for a day and and not suffer for it.

 

Day to day, I'm not terribly careful about cross-contamination (I share a kitchen with gluten-eaters, I eat oats, and generally use the rule that, as long as the food label does not have any identifiable gluten-related ingredients, it's good to go).  On one particular occasion, when I had friends in town, I decided to test my gluten reaction, and went all out on a brewery tour, drinking gluten beers, and eating everything I could think of that had gluten in it.  Even though I had only been on the gluten-free diet for a month, it was such a heavenly release to feel and eat like a normal person again.  The next day I was a little bloated and gassy, but it was only a minor discomfort and well worth the previous day's deliciousness. 

 

So what is my question?  If I don't suffer physical symptoms from the gluten, is it okay for me to occassionally lapse like I did on my gluten weekend?  I am fully aware of the risk of continuing to eat gluten as a person with Celiac's Disease.  I know that there is an increased risk of intestinal cancer and other complications later in life.  That's why I decided to begin the gluten free diet.  Thus, does relapsing like this once every month or so reverse all of the healing that my intestine has done to this point and bring me back to square one?  I would hate to eat gluten for one day of bliss and erase an entire month of gluten free eating and healing.  Likewise, even if I don't feel symptoms from cross-contamination, is there a chance that even trace amounts of gluten are getting into my food and causing a reaction in my intestines, thus reversing the healing that I have been working so hard to promote?

 

I would appreciate any insight you my have on the biology of a healing intestine, or any similar experience you could share.  Thanks!

 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

So I have a kind of unique situation, but I guess everybody does, to a certain extent.  I was totally asymptomatic when I was diagnosed with Celiac Disease about two months ago.  I was skeptical at first, but, to my doctor's urging, I started a gluten-free diet.  I've been on the diet for about a month.  It's definitely been difficult at times to feel like I am missing out on so many delicious things, and causing so much hassle for the friends, family and restaurants that I eat out at, especially when I know that I could simply forgo the gluten-free diet for a day and and not suffer for it.

 

Day to day, I'm not terribly careful about cross-contamination (I share a kitchen with gluten-eaters, I eat oats, and generally use the rule that, as long as the food label does not have any identifiable gluten-related ingredients, it's good to go).  On one particular occasion, when I had friends in town, I decided to test my gluten reaction, and went all out on a brewery tour, drinking gluten beers, and eating everything I could think of that had gluten in it.  Even though I had only been on the gluten-free diet for a month, it was such a heavenly release to feel and eat like a normal person again.  The next day I was a little bloated and gassy, but it was only a minor discomfort and well worth the previous day's deliciousness. 

 

So what is my question?  If I don't suffer physical symptoms from the gluten, is it okay for me to occassionally lapse like I did on my gluten weekend?  I am fully aware of the risk of continuing to eat gluten as a person with Celiac's Disease.  I know that there is an increased risk of intestinal cancer and other complications later in life.  That's why I decided to begin the gluten free diet.  Thus, does relapsing like this once every month or so reverse all of the healing that my intestine has done to this point and bring me back to square one?  I would hate to eat gluten for one day of bliss and erase an entire month of gluten free eating and healing.  Likewise, even if I don't feel symptoms from cross-contamination, is there a chance that even trace amounts of gluten are getting into my food and causing a reaction in my intestines, thus reversing the healing that I have been working so hard to promote?

 

I would appreciate any insight you my have on the biology of a healing intestine, or any similar experience you could share.  Thanks!

Ever hear of the saying never poke a sleeping dragon?

 

You are playing a very dangerous game if you do that.

 

Just because you have no issues now, does not mean your next experience won't be a walk in the park.

 

Likewise with the CC.

Link to comment
Share on other sites
cyclinglady Grand Master

So I have a kind of unique situation, but I guess everybody does, to a certain extent.  I was totally asymptomatic when I was diagnosed with Celiac Disease about two months ago.  I was skeptical at first, but, to my doctor's urging, I started a gluten-free diet.  I've been on the diet for about a month.  It's definitely been difficult at times to feel like I am missing out on so many delicious things, and causing so much hassle for the friends, family and restaurants that I eat out at, especially when I know that I could simply forgo the gluten-free diet for a day and and not suffer for it.

 

Day to day, I'm not terribly careful about cross-contamination (I share a kitchen with gluten-eaters, I eat oats, and generally use the rule that, as long as the food label does not have any identifiable gluten-related ingredients, it's good to go).  On one particular occasion, when I had friends in town, I decided to test my gluten reaction, and went all out on a brewery tour, drinking gluten beers, and eating everything I could think of that had gluten in it.  Even though I had only been on the gluten-free diet for a month, it was such a heavenly release to feel and eat like a normal person again.  The next day I was a little bloated and gassy, but it was only a minor discomfort and well worth the previous day's deliciousness. 

 

So what is my question?  If I don't suffer physical symptoms from the gluten, is it okay for me to occassionally lapse like I did on my gluten weekend?  I am fully aware of the risk of continuing to eat gluten as a person with Celiac's Disease.  I know that there is an increased risk of intestinal cancer and other complications later in life.  That's why I decided to begin the gluten free diet.  Thus, does relapsing like this once every month or so reverse all of the healing that my intestine has done to this point and bring me back to square one?  I would hate to eat gluten for one day of bliss and erase an entire month of gluten free eating and healing.  Likewise, even if I don't feel symptoms from cross-contamination, is there a chance that even trace amounts of gluten are getting into my food and causing a reaction in my intestines, thus reversing the healing that I have been working so hard to promote?

 

I would appreciate any insight you my have on the biology of a healing intestine, or any similar experience you could share.  Thanks!

I guess you could say I was pretty much asymptomatic when I went to the Gastro for a routine colonoscopy.  I had two anemias (one genetic so I knew about that) and low ferritin (stored iron) and Hashimoto's Thyroiditis (diagnosed almost 15 years ago).  During the consult for the colonoscopy,the gastro said that wanted to scope me for celiac when he did the colonoscopy provided my blood test came back positive.  I was floored!  My husband has been gluten-free for 12 years (no official diagnosis) and I had no abdominal issues (unless I consumed milk proteins, eggs, garlic, mushrooms and some tree nuts).  I lived for bread!  I baked all my own bread too!  Cakes, cookies, you name it, I was the baking queen!  I was always careful not to gluten my hubby though! 

 

My blood test came back as "mildly celiac" and during the six weeks or so up to my endoscopy, I ate loaf of bread a day, made cakes and cookies even store bought favorites.  I was going to have a good biopsy for sure!  I knew I'd have to give up all the gluten, so I ate as if I were on death row!  

 

Biospy results were moderate to severe in just six weeks!  By the time of my test, I started having abdominal issues:  gas, bloating, indigestion, a "rock" in my stomach (just a feeling), and a bit of diarrhea.  I became even more fatigued as my thyroid meds and iron were not be absorbed.  

 

Seven weeks after starting my gluten-free diet (started the evening of my biopsy), I finally got rid of the abdominal symptoms, but the anemia hasn't improved one bit even taking iron and my thyroid is worse.  

 

I'm fortunate that my symptoms are not as severe as others here and I think it was plain luck (or my gastro just attended a conference on celiac) that it was found.  I'm only hoping that I can completely heal my intestines within the next year so that I can absorb iron and thyroid.  Who knows that damage to my bones and that's not good for a cyclist!    

 

You didn't state why you were tested to begin with nor did you say how you were diagnosed, but based on my personal experience it doesn't take long to cause significant and possibly permanent damage. 

 

Good Luck!

 

P.S.  I bake as much as ever -- just gluten free.  

Link to comment
Share on other sites
kareng Grand Master

Yes.  You are damaging yourself.  But you are an adult so you will do what you want.  Please do not have children (assuming you can have any-many with untreated Celiac cannot).  It isn't fair to a child to have a parent who doesn't take a disease they may also have seriously.  Harsh? Yes. But you are making a decision that could be a matter of life or death - you need to know all the facts.

 

 

Open Original Shared Link

 

 

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."

Link to comment
Share on other sites
nvsmom Community Regular

When undiagnosed, my celiac symptoms came and went - some years were great and others were miserable. Eventually the bad times were the norm, I developed other life threatening diseases, and I ended up with a lot of pain. If i could go back in time and drop gluten when i was a tiddler, I would. I am absolutely certain that my adult years would have been much much healthier.

 

Any gluten you eat will hurt you. Minute amounts of gluten will set you back weeks, if you eat it everymonth, you will never heal. I hope you will choose to go gluten-free and take cc seriously. If you choose not to, i hope you have good health insurance.  Best wishes.

Link to comment
Share on other sites
VeggieGal Contributor

The way I see it, is that you've been thrown a lifeline of being given the knowledge that you have celiac and can now do something to improve your health. Maybe you need more proof of the damage in order to keep you on the straight and narrow...can you see your biopsy results and speak to a dietician etc? Ever since my diagnosis and explanation about celiac from the specialist I imagine my villi getting covered with poison which stops nutrients getting in my system...I once purposely tried to eat some gluteny bun as I couldnt resist temptation..but fortunately with every bite I felt guilty and imagined my damaged villi and didnt enjoy it one bit...it wasnt worth it.

Friends or family dont always want to understand (as mine dont always...my dad is always saying "oh this wont hurt" ... I actually get quite offended by the ignorance and am learning to stand my ground.

You might think that by occassionally induldging its not affecting you...but how do you really know? What if by you keep lapsing and setting off those antibodies is like picking a scab that will never heal and What if, by doing this you are actually creating more toxins in your body to cause cancer or other related autoimmune diseases or indeed refractory celiac? (please anyone correct me if im wrong).

I know its hard at first, but try to focus on what you can have and the benefits..ie you might become a fantastic cook or eventually develop energy both mentally and physically you never knew you had because youve got so used to the "normal" you.

All the best ... you can do it :)

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,060
    • Most Online (within 30 mins)
      7,748

    Demandcpm
    Newest Member
    Demandcpm
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
×
×
  • Create New...