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Is This Normal?


Becksabec

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Becksabec Apprentice

I was only diagnosed a couple months ago, and in the beginning, I found myself kind of depressed about being on the gluten-free diet. I missed being able to eat whatever I wanted, and it was even worse when I saw my friends and family eat things I couldn't have, in front of me.

But now, I feel like I don't even miss it. I was the grocery store with my roommate a few days ago, and the guy in line in front of us was buying two loaves of wheat bread. My roommate said, "Does that bother you?". My response was, Not only does it not bother me, but I no longer have a desire for it. I've found that the cravings are no longer there, especially since I've become so much more healthier since being gluten-free.

I had so many different health issues before. I felt like my life was a constant doctor appointment, and I always being tested for things, and never really finding out the cause. I had pretty bad anemia, and it got to the point where some days I couldn't even get out of bed. I wasn't able to work or go to school due to it. Now that I'm healthier, I was able to go back to college and do all of the things I wasn't able to before.


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kareng Grand Master

I still miss being spontaneous and eating at any place at any time. But the food doesn't bother me otherwise. Some of it is that I have found substitutes that I really like. Hub made glutenfull pancakes today. They made the house smell wonderful but I didn't want any. I've actually discovered things to eat that I didn't know about. We like the rice tortillas for some things better than the whole wheat ones we used to get.

Becksabec Apprentice

I still miss being spontaneous and eating at any place at any time. But the food doesn't bother me otherwise. Some of it is that I have found substitutes that I really like. Hub made glutenfull pancakes today. They made the house smell wonderful but I didn't want any. I've actually discovered things to eat that I didn't know about. We like the rice tortillas for some things better than the whole wheat ones we used to get.

Oh yeah, I've actually had fun trying to discover all the possible substitutes. I do buy some of the alternative products, and I've done a lot of experimenting with baking. Actually, I think it was the baking that kept me sane in the beginning.

burdee Enthusiast

I was only diagnosed a couple months ago, and in the beginning, I found myself kind of depressed about being on the gluten-free diet. I missed being able to eat whatever I wanted, and it was even worse when I saw my friends and family eat things I couldn't have, in front of me.

But now, I feel like I don't even miss it. I was the grocery store with my roommate a few days ago, and the guy in line in front of us was buying two loaves of wheat bread. My roommate said, "Does that bother you?". My response was, Not only does it not bother me, but I no longer have a desire for it. I've found that the cravings are no longer there, especially since I've become so much more healthier since being gluten-free.

My reaction to the gluten free diet was very similar to yours. I was soooo glad to learn what caused and how to prevent my excruciating gut pain that I didn't miss gluten, because I didn't miss the pain. Also I was coached during my first few days by a friend whose husband has celiac disease. She told me what foods and brands that I could substitute for all the gluten containing foods I previously ate.

Then I joined a local celiac support group and purchased a few books about gluten free living and cooking, which taught me even more. When the leader of my group resigned, I assumed leadership of that group for the next 3 years. As leader, I received many free samples of gluten free foods from companies which wanted me to introduce their foods to my group. I also organized and managed 2 celiac awareness walks and gluten free food fairs in my city. Being actively involved in the celiac community and learning as much as I could about gluten free living prevented me from 'missing' any gluten containing foods.

However, I had more difficulty adjusting to my other 6 food allergies (dairy, soy, egg, cane sugar, vanilla and nutmeg) . Nevertheless, as I found substitutes (and companies made new, tasty substitutes) for foods which contained my allergens, I no longer missed those foods. Even with 7 food restrictions, I have many delicious choices, so that I never miss any foods which contain my allergens.

SUE

Saz36 Newbie

My reaction to the gluten free diet was very similar to yours. I was soooo glad to learn what caused and how to prevent my excruciating gut pain that I didn't miss gluten, because I didn't miss the pain. Also I was coached during my first few days by a friend whose husband has celiac disease. She told me what foods and brands that I could substitute for all the gluten containing foods I previously ate.

Then I joined a local celiac support group and purchased a few books about gluten free living and cooking, which taught me even more. When the leader of my group resigned, I assumed leadership of that group for the next 3 years. As leader, I received many free samples of gluten free foods from companies which wanted me to introduce their foods to my group. I also organized and managed 2 celiac awareness walks and gluten free food fairs in my city. Being actively involved in the celiac community and learning as much as I could about gluten free living prevented me from 'missing' any gluten containing foods.

However, I had more difficulty adjusting to my other 6 food allergies (dairy, soy, egg, cane sugar, vanilla and nutmeg) . Nevertheless, as I found substitutes (and companies made new, tasty substitutes) for foods which contained my allergens, I no longer missed those foods. Even with 7 food restrictions, I have many delicious choices, so that I never miss any foods which contain my allergens.

SUE

Hi, i was diagonised celiac in january and at first found the diet really easy, managed to avoid dairy, sugar and yeast successfully to, but then came the soya intolerance and it took weeks to get my head round but i finally managed it, Then just when i thought things were improving bang comes the corn allergy and i cannot get my head round it. I spectacularly came off the wagon for a couple of weeks because ijust reacted to anything i ate so i figured i would eat whatever i wanted. Very stupid i know. I am now back to eating meat/fish/poultry/ limited fruit and veg and gingerly trying eggs. I feel worse and more lethargic eating tese foods than i did when i ae all my intolerances. I read on here about people baking and replacing their favourite foods but it always seems to contain some of my problem foods. The thought of six to twelve months on this diet doesn't sound appealing and i'm scared that when i have the cravings i haven't the willpower to resist. How does everyone else cope??? or are your symptons so severe they put you off???? I am scared that when i get this corn/fructose thing sorted that something else is gonna rear its ugly head and i will be left with nothing to eat.

Sorry for the rant but no one i know has any answers and the doctors are rubbish although i am back at the hospital tomorrow, i don't hold out much hope.

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    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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