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.

  • 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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748

    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.