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Happy To Be Celiac?


ilookthetype

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ilookthetype Rookie

Surely I can't be the only one to have grown to truly love their diagnosis? I'm trying to get fit and I'm using an site to help me maintain and track everything (myfitnesspal.com) and I love it, but often people will complain about cravings. After finding out I was lactose intolerant in addition to my Celiac I realize I'm pretty much on the Paleo diet and have begun to shift to eating Paleo. I have noticed on both Paleo forums, fitness blogs, and MFP in general people will talk about the cravings for whatever baked good, ice cream, candy and I...can't really relate to that. Sure sometimes I'll walk by a bakery and see beautiful cupcakes or muffins and just want to cry because I'll never be able to have that luxery again, but if I hang out for to long looking at whatever baked good I'll actually start to feel the beginnings of glutening (it'll stop as soon as I walk away). I finally realized that I was infact lactose intolerant (my mom knew from when I was a kid but thought I grew out of it) so I don't even get the cravings for cheese or ice cream anymore (its as if my body has just coaxed my brain into not wanting things it can't handle). I have to catch myself or else I'll get a bit vain, 'Oh, I don't ever cave and eat cupcakes brought in for a coworkers birthday' and I'll mentally prance around in my finest gown. It's true, I won't, but a year ago, before I knew I totally would have. But, my celiac has taught me self-control. I know how to avoid foods that make me sick, I know to avoid soy, and how to check for it in foods. It taught me so much about myself, namely that I can simply not eat foods even if I really want to and I can find a healthy alternative.

Has anyone else had a similar experience? Starting to see what had been a curse as a total blessing?


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AzizaRivers Apprentice

I do. My reason is that needing to read the ingredients list of everything I buy or put near my mouth gets me so sick of seeing ingredients I can't pronounce, or even more so, ones I can pronounce but can't believe I was actually eating them (high fructose corn syrup, etc.). So I've been eating a lot healthier and I prefer the simplest of ingredients. If I can avoid it, I won't eat anything that has unnecessary preservatives, enhancers or other chemicals. I make my own toothpaste out of coconut oil and baking soda, and I wash my hair with baking soda and rinse it with diluted vinegar. My body loves all of this, and I feel so much healthier when I am aware of what I'm eating, drinking, and intentionally applying to my body.

ilookthetype Rookie

I do. My reason is that needing to read the ingredients list of everything I buy or put near my mouth gets me so sick of seeing ingredients I can't pronounce, or even more so, ones I can pronounce but can't believe I was actually eating them (high fructose corn syrup, etc.). So I've been eating a lot healthier and I prefer the simplest of ingredients. If I can avoid it, I won't eat anything that has unnecessary preservatives, enhancers or other chemicals. I make my own toothpaste out of coconut oil and baking soda, and I wash my hair with baking soda and rinse it with diluted vinegar. My body loves all of this, and I feel so much healthier when I am aware of what I'm eating, drinking, and intentionally applying to my body.

Exactly, I recently told my friend that I find my diet restrictions to be freeing. I don't actually have to read ingredients most of the time because 90% of what I eat is from the farmer's market near my house. I've tried since to even go back and eat gluten-free prepackaged food (which is better than a lot prepackaged foods) and it made me feel sluggish. I never would have noticed this if I hadn't started reading the ingredient lists!

glutenfreegirl Enthusiast

I totally get what you are saying, and in my head I know I am the lucky one....but my heart has not caught up hey...I still cry walking the grocery store...no really I physically cry!!!

Harpgirl Explorer

Surely I can't be the only one to have grown to truly love their diagnosis? I'm trying to get fit and I'm using an site to help me maintain and track everything (myfitnesspal.com) and I love it, but often people will complain about cravings. After finding out I was lactose intolerant in addition to my Celiac I realize I'm pretty much on the Paleo diet and have begun to shift to eating Paleo. I have noticed on both Paleo forums, fitness blogs, and MFP in general people will talk about the cravings for whatever baked good, ice cream, candy and I...can't really relate to that. Sure sometimes I'll walk by a bakery and see beautiful cupcakes or muffins and just want to cry because I'll never be able to have that luxery again, but if I hang out for to long looking at whatever baked good I'll actually start to feel the beginnings of glutening (it'll stop as soon as I walk away). I finally realized that I was infact lactose intolerant (my mom knew from when I was a kid but thought I grew out of it) so I don't even get the cravings for cheese or ice cream anymore (its as if my body has just coaxed my brain into not wanting things it can't handle). I have to catch myself or else I'll get a bit vain, 'Oh, I don't ever cave and eat cupcakes brought in for a coworkers birthday' and I'll mentally prance around in my finest gown. It's true, I won't, but a year ago, before I knew I totally would have. But, my celiac has taught me self-control. I know how to avoid foods that make me sick, I know to avoid soy, and how to check for it in foods. It taught me so much about myself, namely that I can simply not eat foods even if I really want to and I can find a healthy alternative.

Has anyone else had a similar experience? Starting to see what had been a curse as a total blessing?

I'm starting to. I've only been gluten-free for a week, but when I started, I was just shy of having lost 30 lbs. I thought, "Well, I'll just not worry about my calorie intake just now and lose the rest after I figure out this gluten thing." But I weighed myself yesterday and I'm still losing the weight after all! I've reached my 30 lb loss so far and I've got another 5-10 for my goal weight. Since a lot of the gluten-free prepackaged stuff is so expensive, I've been sticking to mostly fresh fruits and veggies, which is more difficult to count calorie-wise. I've just been reading about the Paleo Diet today, and I'm thinking about going that route, because I'd rather not have to worry about calories anyway let alone label checking, and I never realized how nice it is to eat fresh food all the time.

The only exception I'd probably make is to carry around SoyJoy or Larabars in my bag. I've got 2 boys under the age of 4 and it always help to have a quick non-perishable snack when I really need it!

kwylee Apprentice

I understand completely. This former pizza & pasta chow hound/donut junkie who went years feeling dizzy and scared, thanks her lucky stars every day that all I had to do was give up gluten, casein and soy. It's been a year and I feel incredibly lucky that I found this out in time to have a life. I truly wish that everyone could feel this way. I know it's harder for some. And I send positive thoughts their way every day I read this forum.

Poppi Enthusiast

I don't love being Celiac. I would love to be eating french bread with my brie instead of rice crackers or eating my bacon and eggs with real thick flaky wheat biscuit instead of rice flour biscuits. I want to eat street food and enjoy a potluck. I hate that I am cross reactive with coffee.

On the other hand I am eternally grateful that I have found what was making me sick all my life. I love that I wake up with optimism and energy instead of waking up sore, nauseated and depressed. I can do things I never though possible, my life has changed so much in the last few months. At the beginning of April I found it difficult and painful to do the grocery shopping and tomorrow I am taking an 8 hour Kayaking course with my husband. On Sunday I am planning a 10km hike with my teenager. That's more physical activity in one weekend than I used to undertake in 2 months.

I love my life now but I will always be a bit sad about the things I can never have.


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IrishHeart Veteran

Not there yet...but I did EMBRACE/WELCOME the diagnosis... as it has saved my life.

In the end, I'll be grateful for the good health, but I plunged into sickness, weight loss, massive lost muscle mass, neuro issues, insomnia and horrible chronic pain for 3.5 years, so I'm not particularly "Happy " I am a celiac...just happy that I'm healing. :)

One day, I may look back on all this as something other than my time in hell (and a lifetime of ill health, miscarriages and lost time)--but it may take me a while. :unsure:

I am thinking when I am feeling better, I will be able to say "I'm happy " too :)

Marilyn R Community Regular

It's funny ... I was talking to my former boss and good friend today and she has a miserable summer cold. She said she came down with it last weekend and is starting to feel better, and that she only coughs when she's talking.

I mentioned that I haven't had a cold in two years, and used to catch one every 4-6 months. (Work in medical, get exposed to everything.) She was shocked and said she thought with my comprimised auto-immune system I'd catch everything. I told her my system is armed and dangerous and fighting everything.

GFGirl, Harpgirl and Sara, the cravings and saddness go away with time. We're a resiliant breed. :D

mamabear272 Explorer

I definitely love it! I feel so much better. I didn't realize how bad I felt till I started to feel better! Even my mom said I'm not as b%$@#y anymore. I asked my hubby and he agreed that I was a little cantankerous before. He didn't realize that I was crabby cause it was so gradual but now that I'm dx, I'm different. It's so crazy to me too!

Judy3 Contributor

I understand completely. This former pizza & pasta chow hound/donut junkie who went years feeling dizzy and scared, thanks her lucky stars every day that all I had to do was give up gluten, casein and soy. It's been a year and I feel incredibly lucky that I found this out in time to have a life. I truly wish that everyone could feel this way. I know it's harder for some. And I send positive thoughts their way every day I read this forum.

My sentiments exactly...!! I know I have my days where I curse this disease but in the end, We are the lucky ones because we HAVE to eat healthy!! My friends that are not gluten free always say "We should all eat like you do and we'd be better off' But they don't because they don't have a 'reason'. Having a reason makes it easier and I'm not sick anymore YAY!! :D

Harpgirl Explorer

and I wash my hair with baking soda and rinse it with diluted vinegar.

I was wondering how you make this wash/rinse? I have issues with hair loss and am wondering if this may help.

YoloGx Rookie

It's funny ... I was talking to my former boss and good friend today and she has a miserable summer cold. She said she came down with it last weekend and is starting to feel better, and that she only coughs when she's talking.

I mentioned that I haven't had a cold in two years, and used to catch one every 4-6 months. (Work in medical, get exposed to everything.) She was shocked and said she thought with my comprimised auto-immune system I'd catch everything. I told her my system is armed and dangerous and fighting everything.

GFGirl, Harpgirl and Sara, the cravings and saddness go away with time. We're a resiliant breed. :D

This is so right! I never get sick anymore either--except for the occasional CC with gluten and now sometimes with high to medium salicylic acid foods. My teeth no longer get caries either and my gums are beautiful rather than sickly. Hair ditto--now shine, body and curl. People comment on how great my skin looks, and like another poster said, mosquitos etc. no longer find me to be a tasty meal... I also don't have anxiety attacks etc. My mind and memory are so much clearer. And my old fibro just went away as long as I take minerals

Etc.!!

love2travel Mentor

Perhaps it is because I have only been gluten-free for four months that I am not happy to have Celiac. I am a foodie to the highest degree. Or maybe it is because I did not get sick from gluten (have no idea whether I would now!) prior to going gluten-free. However, I've accepted it and am happy that my little villi are growing more upright as I speak. Perhaps as I am gluten-free longer I will notice things that I did not previously associate with celiac disease. The thing I am happiest about is that my diagnosis likely saved my life (or at least is improving my future health). Since I did not have outward symptoms I likely would never have discovered it (found out through screening) and perhaps would have related illnesses down the road. I now scrutinize every single morsel of food that enters my mouth and eat a more balanced diet. :)

ElseB Contributor

I love that it forces me to cook almost all of my own food. And food is also something that really binds my husband and I together. We both love to cook. And he's an amazing baker. And there's nothing I love more than spending time in the kitchen together cooking and creating. Oh, and eating too :)

ilookthetype Rookie

I'm starting to. I've only been gluten-free for a week, but when I started, I was just shy of having lost 30 lbs. I thought, "Well, I'll just not worry about my calorie intake just now and lose the rest after I figure out this gluten thing." But I weighed myself yesterday and I'm still losing the weight after all! I've reached my 30 lb loss so far and I've got another 5-10 for my goal weight. Since a lot of the gluten-free prepackaged stuff is so expensive, I've been sticking to mostly fresh fruits and veggies, which is more difficult to count calorie-wise. I've just been reading about the Paleo Diet today, and I'm thinking about going that route, because I'd rather not have to worry about calories anyway let alone label checking, and I never realized how nice it is to eat fresh food all the time.

The only exception I'd probably make is to carry around SoyJoy or Larabars in my bag. I've got 2 boys under the age of 4 and it always help to have a quick non-perishable snack when I really need it!

Myfitnesspal.com has a free calorie counter, so as long as you know how MUCH of the fresh veggies you're eating it'll tell you what the calories are.

My energy level initial dropped from when I went to fresh veggies, a week later I was jittery to go for my run because I looked forward to it so much. I realized I was getting a ton of sugar from the processed foods.

Harpgirl Explorer

Myfitnesspal.com has a free calorie counter, so as long as you know how MUCH of the fresh veggies you're eating it'll tell you what the calories are.

My energy level initial dropped from when I went to fresh veggies, a week later I was jittery to go for my run because I looked forward to it so much. I realized I was getting a ton of sugar from the processed foods.

Cool, thanks! :D

ErinP Newbie

To the original question, yes, I'm happy to be celiac. And for basically the same reasons, it would seem. :)

I, too, ended up going Paleo basically, once I was diagnosed with Crohn's a few months ago. When it turned out to be celiac, my diet stayed the same, but my prognosis improved. ;)

I feel SOOO much better when I'm completely off grains and dairy. I wouldn't have tried it if I didn't "have" to. I'm glad I had to.

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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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