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Falling Off The Wagon


momIM12

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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


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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.


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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

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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