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New...and A Question

Hippie

By Hippie
in Coping with Celiac Disease

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Hippie Newbie
Hippie
Posted

I was just diagnosed...and because I have a bad doctor that didn't tell me much, and I can't figure it out looking anywhere on the internet...will this ever go away? Or am I stuck with this for life?

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fedora Enthusiast
fedora
Posted

I am sorry for your frustration. You have arrived at a good place. Welcome. Were you diagnosed with Celiac Disease? If you were, this is lifelong. I am sorry if this upsets you. There are many wonderful people here willing to help you figure it all out. There are also books, magazines, etc.

This is where the real experts are- the ones who are living with it. Good luck, May your healing begin!

home-based-mom Contributor
home-based-mom
Posted
I was just diagnosed...and because I have a bad doctor that didn't tell me much, and I can't figure it out looking anywhere on the internet...will this ever go away? Or am I stuck with this for life?

No, this will not ever go away. It's unfortunate that you have a bad doctor - read for a bit in this forum and you will discover that you are not alone in that one!

This forum is a God send for information and support. Hang out here and you will learn so much.

This may sound harsh, but the whole transition will be much easier for you if you if you ditch the victim mentality. You were stuck being sick and now you know what was wrong. There is a way to make yourself well again and you can do it. There is a learning curve and you will fall as we all have, but we learn and we get better and eating well gets easier. You are now in control of what you eat and have taken the first steps to getting your health back.

Choose to eat healthy - the pre-packaged, over-processed, preservative-laden American isn't healthy for anyone.

Gluten-free eating does not have to be boring. The other night we had lasagna and chocolate cake - all gluten free! :)

Welcome!

Kilika Newbie
Kilika
Posted

I'm sorry to say, but as far as I know any research I've done says you gotta go gluten-free for life. Kinda like needing insulin for life as a diabetic. That's how I understand it, can others confirm??

flourgirl Apprentice
flourgirl
Posted

Celiac isn't exactly like Diabetes....you don't have to conastantly monitor your body sysems! All you have to do is to be careful.....oh, so careful......of what it is that goes into your mouth! The initial healing may take a while...depending on just how sick you are. Patience, and trust, and feel free to lean on any of these wonderful, helpful people who have been there, done that. If you're lucky, gluten may be your only concern. Many have Diabetes as well as Celiac...a very good many have other intolerances as well and have to be doubly vigilant about their foods.

Celiac is more like a LIFE Sentence....in that you must eat healthy. You can eat junk foods, just not gluten foods. The less processed the better. That is true of everyone, I wish I could get all of my loved ones to eat simpler, more natural foods for better health.

Anyway...attitude is a lot of it. Changes may get you feeling down..there is depression that comes with Celiac, but improves with health. If you do your best to look at it all with a positive attitude, it will all go better for you. Get as much info. as you can and just keep trying. Good luck and good health to you!

happygirl Collaborator
happygirl
Posted

Celiac is a life-long condition.

I recommend www.celiacdiseasecenter.columbia.edu and www.celiaccentral.org for more information (besides this site!)

Glutina Rookie
Glutina
Posted

Hi!

I know that this might seem like an obvious question...but have you thought of switching doctors or getting a second opinion..or going to a G.I. specialist? You should never feel like you have to be stuck with a bad doc. I have personally been lucky enough to a have a WONDERFUL doc who referred me to a great specialist, but am realizing after joining this forum that this is not the case for many! This is your life and YOUR health, and you get to choose who helps keep you healthy....docs included!

-Glutina

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Hippie Newbie
Hippie
Posted
  • Author

Well I have had really bad pain and uh...digestive problems...I'll just call it that? That hit me out of nowhere. Plus I've been sleeping for about 12 hours a day. And I have no energy. This has been going on a for a couple months. First my doctor told me to cut out dairy. I did that and didn't get better. Then they diagnosed me with IBS and gave me pills for that, called bentyl. That didn't help either. It jst kept getting worse. Then I ended up in the hospital. And they still never gave me a GI or a CT scan or anything. They just took my blood and a stool sample and they said everything was fine. They told me to try cutting out wheat, so I've just been eating fruit, vegetables, meat, and corn tortillas for the past couple weeks, and I feel a little better, so my doctor told me this is it. But sometimes I'm still in a lot of pain. I'm going to see a GI doctor on March 13th though just to make sure there's nothing else there.

fedora Enthusiast
fedora
Posted

Hi,

Healing can take a while. If you noticed improvement that's great, but realize it may take awhile. Two weeks is not long enough. There are specific blood tests that doctors can order and a biopsy that a GI can do. someone else would have more info on that than me. However, there are people who test negative on blood test and their biopsy shows no damage, but still are gluten intolerant. Please realize, gluten intolerance is more than wheat. It also includes rye, oats, barley, and spelt. You may not like your doctor, but it sounds encouraging that you DR would suggest this. There are people who have been dismissed by their doctors or their doctors refuse to believe they have gluten intolerance because their tests were negative. Good luck!

nikky Contributor
nikky
Posted

welome to the forum.. as the others have said this is life long, there is no cure

the thing about coeliac is that we are in controll of our health, only you can stop yourself eating gluten and therefore you can stop yourself getting sick.

healing takes time and there is the possibility of deficiencies and other intolerances to conted with (lactose intolerance seems pretty common among coeliacs).

eat healthy, and get as much variation in your diet as possible.

there are good celiac disease aware drs out there, im sorry that youve found one of the many bad ones but with help and support from the people on this site you will get there. Good luck. :)

Lshetler Rookie
Lshetler
Posted
They told me to try cutting out wheat, so I've just been eating fruit, vegetables, meat, and corn tortillas for the past couple weeks, and I feel a little better, so my doctor told me this is it. But sometimes I'm still in a lot of pain. I'm going to see a GI doctor on March 13th though just to make sure there's nothing else there.

I didn't notice much difference at all at first. The only way I knew I was intolerant to gluten was that when I went off it for a week, if I ate a slice of bread I wanted to die, lol. It wasn't until I was on a strict diet of only rice, veggies, and unseasoned chicken/fish that I felt better, and do I mean better! Now I can eat fruit as well; it takes time for the intestines to heal.

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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