Jump to content
  • 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

Falling Off The Wagon


momIM12

Recommended Posts

momIM12 Newbie

So I am newly dignosed celiac. It's not even been 2 weeks, and I can't seem make it more than 4 days without eating some form of gluten. I know that sounds awful. I guess just wasn't prepared for my diagnosis and some days I can mentally do it, I can say I am not touching gluten. But other days, like today, I was stressed and I just needed that comfort food and I went back to that old habit. Of course I regret it, and my stomach feels sick and I just sorta want to cry.

Anyone else feel this way when they first got their diagnosis?

 

Jessica


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



Celiac.com Sponsor (A8-M):



answerseeker Enthusiast

But your damaging your intestines. It's hard but you can't heal until your completely off of it.

GottaSki Mentor

Welcome Jessica!

 

Two weeks is not a long time -- you are still adjusting.  The transition is not easy -- I imagine you already know how serious it is that you are intentionally eating gluten so I don't see a reason to give you a hard time -- simply remind you that healing can't happen until all gluten is removed once and for all.

 

Tomorrow is another day to start healing your body.  You are the only one that can do this - no one can make you.  

 

How can we help?  What are your comfort foods -- I doubt there is anything that one of us can't come close to replicating gluten-free -- surround yourself with plenty of options during these first weeks that are safe - yet yummy so you can have a tough day without resorting to eating gluten.

 

Try not to be too hard on yourself -- use the time you are upset to find ways to prevent this from repeating.

 

Hang in there :)

GottaSki Mentor

and here is an excellent place to start learning more to avoid a several of the pitfalls many encounter during the early days -- 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

answerseeker Enthusiast

I gave in a couple weeks after my diagnosis and told myself maybe the dr got it wrong I'm just going to test this! I ate a subway sandwich and was sick for days! It's hard but the people on this forum are so supportive. I'm new too and they have answered all my questions and got me through it ;-)

AlwaysLearning Collaborator

Sorry to hear that you still have to deal with temptations around you. Darn those kids!

Here are some ideas for go-to snack foods. (One of my first posts here was looking for ideas to fill that nitch.)

• Make popcorn - as in the kind you cook in a pot on the stove yourself. It is a good comfort food, has that crunch and a touch of salt that we crave, is high in fiber, and is filling. And you can make enough to share with the family (or have for stale leftovers the next day).

• Switch your family over to some gluten free foods as well so that what they are having doesn't tempt you to hurt yourself. Pasta, pancakes, brownies, cookies. There is no reason to bring the gluten versions into your house ever again.

• Or hide your gluten-free snacks someplace where the family won't find them so that they haven't disappeared when you need them. Cookies can easily be hidden in the freezer.

• Make a trip to a grocery store that is known for carrying organic or health foods. They'll often have a lot more gluten-free options to choose from, and will be likely to have a big gluten-free label on the shelf or have a gluten-free section. A few of the gluten-free items I tried early on were pretty awful, but 90% of them weren't that much different than the gluten versions when it came to taste and texture.

• Drink more water

• Get tested for vitamin deficiencies. They are common in those with celiac and can cause cravings despite that the foods we turn to likely won't help at all. Getting any deficiencies fixed can also mean faster healing, better mood and energy levels, and help avoid additional symptoms caused by the deficiency.

• Look for the less obvious snacks that are already in your house. I can't tell you how many times I've opened up a can of olives because there was nothing else available in a pinch.

• Keep coming back to the forum for support. These people were/are a HUGE help to me.

• Get yourself some gluten-free beer? 

• Have snacks on hand for yourself ALL of the time. Half of my accidental cross contaminations so far were from when I ran out for what I thought would only be 2-3 hours and it turned into 6-7, forcing me to find something to eat on the go. I still get hit frequently by low blood sugar simply because I don't eat when others are eating, and am only starting to realize that I can pretty much find gluten-free juice anywhere I go.

• Do research about how to decontaminate your kitchen and hidden sources of gluten. That is a great way to avoid accidental contaminations. My rule is to simply not buy any pre-made foods unless they actually say on the label "gluten free". 

So here is the good news. Once you are completely gluten free, your stress reactions should drop considerably. Those I know in real life who are gluten free use words like "calmer", "more even", and I say "dulled". And you'll sleep better so you'll feel more rested.

However, damage to the intestines aside, you have GOT to stop the glutenings you know of. Gluten is an opiod peptide, which means it fits into the opiate receptors in our brains, gives us a feeling of a high when we eat it, and has withdrawal symptoms. Those alone should be enough to keep you from knowingly ingesting gluten. So you're noticing the stomach issues, but the irritability, the headaches, and the brain fog are all part of the reaction as well. And every instance takes days to recover completely, if not a full week. Just having an accidental minor contamination once a week could be enough to keep you in a perpetual state of miserable!

You already know you have to do better, just need to find the resolve. I'm certainly not going to beat you up because your body is already doing that.

But start paying attention to the little things that are improving once you manage to stay gluten free for a week and have gotten through most of the reactions and withdrawal. I can probably rattle off two dozen things that cleared up when I went gluten free, things I thought were just part of aging or never imagined were related to gluten. Someone should restart or resurrect one of those old threads of things that got better. It is a great motivator to realize that you've got the same improvements as well.

Chrisz1000 Newbie

Agreed, that thread called something like "things that got better" is such an inspirational dangling carrot!!

 

Once diagnosed gluten should never purposefully enter your mouth - the long term affects should be enough to put anybody off, cancer being one very real threat, depression and long term gut damage being the others . Gluten should be considered poison - by ingesting gluten as a comfort food you will enter a downward spiral that will be harder to get out of. Furthermore, those around who see you eating gluten will simply believe the condition isn't all that serious.

 

Please, please, please read through this forum - spend a few hours - you will see that things are extremely difficult in the first 6 months but then things get clearer, easier, healthier...happier!  The difficult months are so worth it. Good luck.


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



Celiac.com Sponsor (A8-M):



momIM12 Newbie

Thanks for the support. I just have to not give into the temptation and realize it's not worth the pain. Because the pain is real and not made up in my head, like I sometimes try and tell myself. I can do this, I just have to stay strong. I was really suprised by all the gluten free options out there and so far from what I have tried have been pleastly surprised. I just have to let old habits die. This is my new life and I just have to adjust. Glad I found a place where I can get advice and product info and support and a listening ear from people who understand. :)

 

Jessica

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.