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Falling Off The Wagon
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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

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

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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 :)

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

 

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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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 ;-)

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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.

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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.

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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

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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