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chick2ba

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chick2ba Apprentice

Please understand that I am not trying to be pessimistic or depressing...

Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

I was (like all of you) very sick before diagnosed. I remember being so overjoyed to find out what was wrong and that it could be 'fixed' with just a few simple diet substitutions (cooking from scratch is great fun). But unfortunately, after the initial healing/gluten-detox period, there has not been much more improvement. I strictly follow the diet and everyday still experience bloating, nausea, pain and, most recently, diarrhea. Some days are way worse than others, but overall they are all pretty bad and only seem to get worse the more observant I get and the more foods I remove...

Of course, I want to be healthy, so will stay gluten-free and work to identify any other food allergies, but I'm beginning to wonder if I am expecting too much from my broken body. Does ANY celiac ever have days were they feel altogether healthy, vibrant, energetic and alert??

So, I think if someone sat me down and told me flat out that I will never feel healthy again, then I would learn to accept this hell and possibly come to peace with my body and life. We have such a short time here as it is, and I don't want to waste any more of it wondering and fretting because I am not well. I want instead to fight, cope and prove my resilience without being disillusioned.

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ravenwoodglass Mentor
Please understand that I am not trying to be pessimistic or depressing...

Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

I was (like all of you) very sick before diagnosed. I remember being so overjoyed to find out what was wrong and that it could be 'fixed' with just a few simple diet substitutions (cooking from scratch is great fun). But unfortunately, after the initial healing/gluten-detox period, there has not been much more improvement. I strictly follow the diet and everyday still experience bloating, nausea, pain and, most recently, diarrhea. Some days are way worse than others, but overall they are all pretty bad and only seem to get worse the more observant I get and the more foods I remove...

Of course, I want to be healthy, so will stay gluten-free and work to identify any other food allergies, but I'm beginning to wonder if I am expecting too much from my broken body. Does ANY celiac ever have days were they feel altogether healthy, vibrant, energetic and alert??

So, I think if someone sat me down and told me flat out that I will never feel healthy again, then I would learn to accept this hell and possibly come to peace with my body and life. We have such a short time here as it is, and I don't want to waste any more of it wondering and fretting because I am not well. I want instead to fight, cope and prove my resilience without being disillusioned.

It can be a bit of a long haul for some of us. Have you cut out dairy? Have you checked all your toiletries and shampoos, soaps etc? Have you been able to degluten your living quarters or do you share your kitchen with gluten eaters? It can take a long time to ferret out all the sources of CC,everything from household glues and paint and craft supplies to drywall mud and the powder that sometimes comes in disposable rubber gloves. I was glutening myself for years by using the same can opener that I used for pet food, I thought rinsing it would be enough. It can be a challenge but eventually things should improve. Some find it helpful to keep a food diary at first but the delayed reaction of intolerances can make that a bit confusing. It can be easy to assume that the last foods we ate are the ones that we are reacting to when it actually was something we ate 3 days ago. If you feel you have other food intolerances an elimination diet under the guidance of an allergist can be very helpful. I hope you feel better soon.

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dionnek Enthusiast

you are not alone in your feelings - I just told my husband last night that I don't think I can do this. Seems like every day I find out something else that i can't have or something else i need to change. It is very frustrating, and I'm only feeling WORSE, not better (it's only been a little over a month for me though). I am beginning to think that it's just not worth it, but then I see what others have gone through and survived, and I think maybe I can do it.

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Lister Rising Star

i would try to give you words of incuragment and hope, unforuntaly i am at almost the 4 month mark on the diet and i still feel like crap 100% of the time, sometimes i am better then normal and im able to function and have fun, but most of the time im to tired to even leave my room and i sit around and feel sorry for myself. Hopefully you will feel better soon- from what i have read it does get better and you will become normal again and we are acually healthyer then most people since are diet is alot better then eating normal americanized foods. but for now yes u probably wont feel great atleast i know i dont

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Guest cassidy

I felt good initially and then started feeling bad again. Unfortunately I had other stuff wrong. I had been on antacids which allowed an amoeba and bad bacteria to make a home in my intestines. I needed two antibiotics to get rid of them.

Then I had candida overgrowth, which is common with celiac. I'm still battling that. But, ever since the antibiotics I feel good, unless I'm glutened. I have no intestinal issues at all - no bloating, d, gas, nothing.

So, there may be other issues, or maybe you are still healing. I'm going on 6 months gluten-free. I have had my ups and downs, that is for sure, but I really am doing well now.

I hope you figure out what else is going on. Do you have a doctor that believes in natural treatments in the area?

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evie Rookie
i would try to give you words of incuragment and hope, unforuntaly i am at almost the 4 month mark on the diet and i still feel like crap 100% of the time, sometimes i am better then normal and im able to function and have fun, but most of the time im to tired to even leave my room and i sit around and feel sorry for myself. Hopefully you will feel better soon- from what i have read it does get better and you will become normal again and we are acually healthyer then most people since are diet is alot better then eating normal americanized foods. but for now yes u probably wont feel great atleast i know i dont

Lister, I am so proud of you with your giving encouragement to someone who is having a rough time fighting the celiac disease too. that does mean a lot to us when we are feeling at our lowest, at least we think it is. Back 4 months ago my GI Dr. said " it will get worse before it gets better" and I thought "it can't possibly get worse" but it DID. I went into BIG hot flashes & sometimes I would be cold all over or just my back or just my head..AAARRRGGGHHH!! Now I am near 6 months & counting, doing better in lots of ways but also have a few problems crop up that are new. just everybody hang in there/ me and we will all be better i n OUR own time...I hope you are feeling better too chickba!! evie

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Lister Rising Star

yeah things will get better, its hard to exept the fact that it takes so long though, hey evie about those cold flashs in your head... your the only other person besides me that has mentioned that, i get it alot, but usualy only when i feel i may be over stimulating my brain (watching a movie that i get to into) its like a super cold tingle/numbness, i get it in my head

hang in there chick2ba hopefully things will seem alot better for you soon. How long have you been on the diet? it took me 3 weeks to see real improvement, it only lasted about 1 week th ough then i acually felt worse then i did before i started the diet, now it is random i will ahve like 3 awsome days and then 2 crappy days then 1 reallly really bad day and then back to good days, it seems like a rollercoaster as what everyone has said, so just hold onto the handle bars and dont puke until your off the ride ( or something like that) anyways hope u get better soon

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rinne Apprentice
Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

Thanks for the question, that is just how I feel a lot of the time.

Now that I can't do anything but acknowledge how sick I am I realize I also have to face just how sick I have been and for how long, further, how it has affected every aspect of my life. Sometimes I just feel overwhelmed. This is not sounding very upbeat and encouraging. :huh:

So the very best thing is I feel like I have my body back, I feel like I know a truth openly that has been hidden from me. I know without a doubt that I can trust my gut. The rest of it I will figure out day by day.

I hope you are feeling better.

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lindalee Enthusiast
Please understand that I am not trying to be pessimistic or depressing...

Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

I was (like all of you) very sick before diagnosed. I remember being so overjoyed to find out what was wrong and that it could be 'fixed' with just a few simple diet substitutions (cooking from scratch is great fun). But unfortunately, after the initial healing/gluten-detox period, there has not been much more improvement. I strictly follow the diet and everyday still experience bloating, nausea, pain and, most recently, diarrhea. Some days are way worse than others, but overall they are all pretty bad and only seem to get worse the more observant I get and the more foods I remove...

Of course, I want to be healthy, so will stay gluten-free and work to identify any other food allergies, but I'm beginning to wonder if I am expecting too much from my broken body. Does ANY celiac ever have days were they feel altogether healthy, vibrant, energetic and alert??

So, I think if someone sat me down and told me flat out that I will never feel healthy again, then I would learn to accept this hell and possibly come to peace with my body and life. We have such a short time here as it is, and I don't want to waste any more of it wondering and fretting because I am not well. I want instead to fight, cope and prove my resilience without being disillusioned.

I am new to all this. I was doing pretty good until this morning. I ate salsa and target -Archer Farms tortilla chips last night. One of them did not agree with me! I get more tired than anything along with the D. I don't know what I would do without this wonderful group. It helps me so much because I depend on the group for what to eat, and not eat and all the other stuff that goes with this. I went in BJ's today but couldn't remember what someone said was good in there. It is alot to take in. I am so grateful for this group of wonderful people. We will survive!!!! LindaLee

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chick2ba Apprentice
it only lasted about 1 week th ough then i acually felt worse then i did before i started the diet, now it is random i will ahve like 3 awsome days and then 2 crappy days then 1 reallly really bad day and then back to good days, it seems like a rollercoaster

Lister, that is exactly how it goes: random and moody. A few better days then tons of really bad ones. I even go out to the store on the “up” part of the cycle and get excited about making hot meals and sweets with fresh fruits, veggies and meat (nothing even remotely dangerous). Then I end up feeling ill and have to give away all my homemade gluten-free meals and snacks to my boyfriend… at least he is happy about all the free food.

I was diagnosed very quickly (thank goodness) and am now at the 6 month mark being gluten-free. The first improvements were incredible, but then things just started sliding downhill fast. All the symptoms came back and I was certain cross-contamination was the cause. So I slowly began getting more and more radical (ALL new pots and pans, cooked with gloves, washing everything, got my own place, ate only fresh fruits/veggies + things verified gluten free, etc...) in hopes I would get better. When nothing was working I felt like I was going CRAZY and slipped into depression.

Then I stumbled onto the forum and learned about how other food intolerances could mimic gluten poisoning. So I started eliminating food groups, one by one, starting with dairy. Now I am down to only 4 items: gluten-free/DF cereal, gluten-free/DF ricecakes, gluten-free/DF chips/cookies and gatorade/water. This got me nowhere except terrible nausea, dizziness, bloating and weird diarrhea. I never even got diarrhea and disorientation BEFORE diagnosis, but here they are now. There are days when I simply don't eat at all cause I feel so gross (and yes, I've checked all shampoo/makeup and keep a very detailed food diary).

Sorry, I don't want to whine or wallow in all of this. I know there are many others struggling, too, with much more severe symptoms. It all just flat out sucks… I feel like it has stolen my life away despite all my best efforts. Thanks for listening, there are no support groups on campus and sometimes feel very alone. All I wanted was to be happy.

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judy05 Apprentice
Please understand that I am not trying to be pessimistic or depressing...

Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

I was (like all of you) very sick before diagnosed. I remember being so overjoyed to find out what was wrong and that it could be 'fixed' with just a few simple diet substitutions (cooking from scratch is great fun). But unfortunately, after the initial healing/gluten-detox period, there has not been much more improvement. I strictly follow the diet and everyday still experience bloating, nausea, pain and, most recently, diarrhea. Some days are way worse than others, but overall they are all pretty bad and only seem to get worse the more observant I get and the more foods I remove...

Of course, I want to be healthy, so will stay gluten-free and work to identify any other food allergies, but I'm beginning to wonder if I am expecting too much from my broken body. Does ANY celiac ever have days were they feel altogether healthy, vibrant, energetic and alert??

So, I think if someone sat me down and told me flat out that I will never feel healthy again, then I would learn to accept this hell and possibly come to peace with my body and life. We have such a short time here as it is, and I don't want to waste any more of it wondering and fretting because I am not well. I want instead to fight, cope and prove my resilience without being disillusioned.

I think it depends on how long you have been sick. I wasn't diagnosed until I was in my early 60's. It took me almost a year to start feeling better. I kept denying that I had a problem with dairy, however after totally giving up dairy I am so much healthier than I have ever been. Just be patient, it takes a long time to get the gluten out of your body, afterall it didn't get in there overnight. You do feel worse before you get better!

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Ursa Major Collaborator
Now I am down to only 4 items: gluten-free/DF cereal, gluten-free/DF ricecakes, gluten-free/DF chips/cookies and gatorade/water.

You know, with me it was starches especially that kept me feeling bad. But it seems that all you're eating now are starches! That is a terrible idea and very unhealthy. How are you supposed to get any vitamins and protein that way?

Have you tried eating only meat and well cooked vegetables? That is what I did at first, and those things were all I could tolerate........plus some cooked fruits (no raw fruits even, and certainly no raw vegetables).

I found gatorade made me feel bad as well.

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evie Rookie

evie here..I had those hot flASHES & COLD PLACES FOR JUST ABOUT 1 MONTH WHEN i WAS @ MY SICKEST.

think I was just getting the gluten out of my system, seemed to be no rhyme or reason for them that I could find except I think the hot at least partly came when I was so weak and was pushing myself to get a few things done such as cooking & etc. hang in there, remove what you need to from your diet but don't cut yourself down too much, gotta keep some energy for work & those kitties. they sound special. we have a 3 year old female tabby that was born i n the wild & we did not get her till about 6 mo. old. she is sooo independant but mellows a bit every year. she prefers hubby to me, he has spent more time/ her. evie :P

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ebrbetty Rising Star

I feel exactly the same way as you, just last night while sitting in pain I thought about how happy I was when I found out it was celiac disease and I would feel great if I stopped eating gluten.

everyday is still filled with stomach pain etc and I follow the diet very carefully..its so depressing.

I also think about ordering a sub or a pizza everyday just to see if the pain will be any worse than it is now while eating gluten-free, but I'm too scared.

everything we read or hear about celiac tells us if we stop the gluten we will feel great...well, its been over 6 months and I still feel like crap

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jerseyangel Proficient

I agree with Ursula. Some of us can't tolerate starches, and to make them the bulk of your diet is not a good idea. Since you are not feeling any better eating this way, I also suggest clean meats and poultry, cooked veggies, applesauce, sweet potatoes, olive oil. Try those for a week or 2 and see if there is any improvement. This way of eating gives you some protein, which you need to heal, and it's also easy on your stomach. I hope you begin to feel better soon :) Feel free to PM me anytime!

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arial12bold Rookie

Hi everyone,

I am in a similar situation, 5 months of diet (tested positive to gluten intolerace with enterolab) and recovering veeery slowly. I've been recently reading a lot of material about heavy metal toxicity especially about dental amalgams, and I was amazed to read how many people discover that their problems are related to the mercury fillings.

Without going too much into details, the mercury contained in those dark grey fillings is slowly released and accumulated in certain organs (liver, kidneys, intestine) and after a number of years it can cause serious problems, it just depends on how strong is your body and immune system.

So I guess people with celiac and/or intolerances should be concerned with this aspect, maybe the fillings are not the cause of our problems but they can seriuosly contribute to depress the immune system and slow down or even paralize the recovery.

It's unbelievable to read that dentists have to take so many cares about handling the mercury: don't touch with hands, keep in ubreakable containers, work in well-ventilated spaces, avoid heating the mercury, preserve the amalgam scrap under water... but then it goes straight in our mouth, where it slowly corrodes in years and it's transported all over! :o:o

I guess it's important to eliminate check and possibly eliminate all the sources of "stress" for our body.

You can find a lot of info around the web and there're also several books on the topic, I can provide links and titles if anyone is interested.

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lindalee Enthusiast
Hi everyone,

I am in a similar situation, 5 months of diet (tested positive to gluten intolerace with enterolab) and recovering veeery slowly. I've been recently reading a lot of material about heavy metal toxicity especially about dental amalgams, and I was amazed to read how many people discover that their problems are related to the mercury fillings.

Without going too much into details, the mercury contained in those dark grey fillings is slowly released and accumulated in certain organs (liver, kidneys, intestine) and after a number of years it can cause serious problems, it just depends on how strong is your body and immune system.

So I guess people with celiac and/or intolerances should be concerned with this aspect, maybe the fillings are not the cause of our problems but they can seriuosly contribute to depress the immune system and slow down or even paralize the recovery.

It's unbelievable to read that dentists have to take so many cares about handling the mercury: don't touch with hands, keep in ubreakable containers, work in well-ventilated spaces, avoid heating the mercury, preserve the amalgam scrap under water... but then it goes straight in our mouth, where it slowly corrodes in years and it's transported all over! :o:o

I guess it's important to eliminate check and possibly eliminate all the sources of "stress" for our body.

You can find a lot of info around the web and there're also several books on the topic, I can provide links and titles if anyone is interested.

Sounds interesting. Last time I had a filling come out I requested the white. I asked if the other stuff was bad and she said no. I have suspected it wasn't good. I had some dental problems last year -

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chick2ba Apprentice
I also suggest clean meats and poultry, cooked veggies, applesauce, sweet potatoes, olive oil. Try those for a week or 2 and see if there is any improvement.

Thank you, Jerseyangel, for suggesting a few foods to try. Cooked up some fresh green beans tonight with safe Kraft hotdogs-- feel bloated, of course, but it'll be alright.

I KNOW eating only 4 of anything is not too healthy ;) , but I was sticking with packaged foods that had "gluten free" stamped right on them. That was the only reason for "choosing" that food group. I was worried the veggies, fruit and meat I kept getting and cooking somehow got contaminated, since my dh pinpricks keep coming up. Also taking a multi-vitamin, B-6, B-12 and calcium supplements (all gluten-free; Nature Made) as a pitiful stab at nutrients.

Ursula, you know your body well.. how the heck did you identify all your intolerances? Any good systematic plans besides the food diary?

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lindalee Enthusiast
Thank you, Jerseyangel, for suggesting a few foods to try. Cooked up some fresh green beans tonight with safe Kraft hotdogs-- feel bloated, of course, but it'll be alright.

I KNOW eating only 4 of anything is not too healthy ;) , but I was sticking with packaged foods that had "gluten free" stamped right on them. That was the only reason for "choosing" that food group. I was worried the veggies, fruit and meat I kept getting and cooking somehow got contaminated, since my dh pinpricks keep coming up. Also taking a multi-vitamin, B-6, B-12 and calcium supplements (all gluten-free; Nature Made) as a pitiful stab at nutrients.

Ursula, you know your body well.. how the heck did you identify all your intolerances? Any good systematic plans besides the food diary?

Have you tried juicing? It really helped me when I was real sick. I bought a vitamix but you could use a blender. It helped me get my strength back. Carrot juice with ginger is really healthy. Make it with water so it isn't too thick. Any fruit is good. Strawberries and bananas. Apples and Oranges. I put flax seed oil in mine. Take care. LLee

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Rachel--24 Collaborator

I agree with Jersey and Ursula about all the starches. I had to eliminate all processed foods in order to feel better. I'm not eating any grains either. Just lean meats, fruits and veggies. I drink water. Gatorade would probably set me back for a couple weeks.

I was the same as far as having a few good days but then a whole string of bad ones. I was also getting excited about meals and gluten free treats....even rice cakes and peanut butter were a treat for me. The processed foods were the reason for having so many bad days.

Now I'm gluten free, dairy free, corn free, soy free and egg free. I also have to be careful of additives in foods....mainly sulphites and MSG.

My diet is clean now and I'm feeling good. :)

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Ursa Major Collaborator
Ursula, you know your body well.. how the heck did you identify all your intolerances? Any good systematic plans besides the food diary?

Well, somehow I seemed to have 'lucked out' on how to identify the problem foods. The gluten was the easy and obvious one. When I was doing celiac disease research, I stumbled upon this amazing board. Two weeks after starting to read here, somebody posted the link to the lectin website, and when reading there, realized that I had always reacted to ALL the foods high in lectins, and eliminated them (to be tested one at a time at a later date).

When three months later my generalized pain started coming back, Rachel_24 posted a link on salicylates. It all made sense, but I was soooooooo hoping it was EITHER lectins OR salicylates.

So, I cut out salicylates for a few weeks, so I could test things. The pain went away again. Then, I tried the lectins one at a time. First, the gluten. Terrible idea. Next rice, with disastrous results, dairy........ouch, eggs......very ill.....that was it for the lectins (I haven't really dared with beans yet, but know soy is a definite no-no for me). So, then one day I took some baby Aspirin, and ate (for good measure) an orange, a few almonds, some grapes and a mint candy. The next day I felt like I was on fire, I was hurting so bad! Meaning, it is obviously the lectins AND the salicylates for me (as well as gluten, nightshades, msg).

To sum it up: Gluten causes awful problems (gastrointestinal as well as moodwise, brainfog, backache etc.), lectins cause awful joint pain, back ache, headache, fatigue, gastro problems, stomach cramps, buckling knees and ankles, tearing eyes and others, and salicylates cause terrible muscle aches, generalized ache (even my skin aches), as well as nausea, dizziness. And the nightshades.........they showed up on an intolerance test a few years ago, and I knew they cause bad problems (potatoes cause gastro problems, tomatoes cause migraines, peppers cause pus-filled pimples all over my nose and chin...........hideous).

Where would I be without the amazing people here? Probably back on codeine 24/7. Even though I hate being on such a restricted diet, I am very glad to have been able to stop the pain by eliminating the offending foods, rather than covering it up by taking codeine (which obviously can't be good for anybody).

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Guest kathy56
Please understand that I am not trying to be pessimistic or depressing...

Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

I was (like all of you) very sick before diagnosed. I remember being so overjoyed to find out what was wrong and that it could be 'fixed' with just a few simple diet substitutions (cooking from scratch is great fun). But unfortunately, after the initial healing/gluten-detox period, there has not been much more improvement. I strictly follow the diet and everyday still experience bloating, nausea, pain and, most recently, diarrhea. Some days are way worse than others, but overall they are all pretty bad and only seem to get worse the more observant I get and the more foods I remove...

Of course, I want to be healthy, so will stay gluten-free and work to identify any other food allergies, but I'm beginning to wonder if I am expecting too much from my broken body. Does ANY celiac ever have days were they feel altogether healthy, vibrant, energetic and alert??

So, I think if someone sat me down and told me flat out that I will never feel healthy again, then I would learn to accept this hell and possibly come to peace with my body and life. We have such a short time here as it is, and I don't want to waste any more of it wondering and fretting because I am not well. I want instead to fight, cope and prove my resilience without being disillusioned.

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Guest kathy56
:) This is such an encouraging message board for people who are newly diagnosed with celiac disease. It is so far such an agonizing disorder. I have had digestive problems most of my life, diagnosed with irritable bowel, gastritis, acid reflux, then fibromyalgia and depression. I've been really sick since January when I had a really bad virus. I've gone downhill from there. Lost almost 35 lbs, I am down to 104 now, been lowest at 102. I look awful, like someone out of a refugee camp. Soon as my Biopsy came back positive for celiac I have tried to change my diet to gluten free foods. Before I had a yuckky taste in my mouth, like I just ate a plate of butter or something, so I couldn't even eat anything that had been cooked in that. Now I can tolerate it a little bit. I am still learning about this disorder and trying to get better. It is so hard though. I am afraid to eat sometimes. But I know that is not good either. I hope we all feel like humans again soon and can enjoy life once again. This disease sure drains the life out of you.
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jenvan Collaborator
Please understand that I am not trying to be pessimistic or depressing...

Do I just have to come to grips with the fact that I will feel like sh*t for the rest of my life?

I was (like all of you) very sick before diagnosed. I remember being so overjoyed to find out what was wrong and that it could be 'fixed' with just a few simple diet substitutions (cooking from scratch is great fun). But unfortunately, after the initial healing/gluten-detox period, there has not been much more improvement. I strictly follow the diet and everyday still experience bloating, nausea, pain and, most recently, diarrhea. Some days are way worse than others, but overall they are all pretty bad and only seem to get worse the more observant I get and the more foods I remove...

Of course, I want to be healthy, so will stay gluten-free and work to identify any other food allergies, but I'm beginning to wonder if I am expecting too much from my broken body. Does ANY celiac ever have days were they feel altogether healthy, vibrant, energetic and alert??

So, I think if someone sat me down and told me flat out that I will never feel healthy again, then I would learn to accept this hell and possibly come to peace with my body and life. We have such a short time here as it is, and I don't want to waste any more of it wondering and fretting because I am not well. I want instead to fight, cope and prove my resilience without being disillusioned.

I got worse before getting better on the diet. It was a really hard first year for me. I felt more tired and sick than previous even...even as my blood work improved and normalized. A celiac nurse I was working with said she thinks 2 years is the amount of time it takes *most* to actually start feeling "normal" or greatly improved again. I have been gluten-free for about a year and half and the past few months I have finally noticed improvements in energy. However...I'm still not to normal. Some of us have just had celiac disease for so long and/or suffered so much damage that recovery can take a while. I think most people do experience great improvement, however, I think some remain more susceptible to getting run down, sick etc. 6 mos isn't long for some Celiacs...but you should be noticing some kind of improvement...

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Guest laferriere

I have very similar frustration and am a bit new to this. I also feel, where all my life I've eaten a very well-rounded, healthy diet, I have eliminated so much it seems there's about 5 things I can tolerate! Meats, salmon, fish and veggies and a little fruit seem okay. Yet things still are unpredictable and although I keep a detailed food log with symptoms on it, I'm still not always sure what caused a problem. And it does seem to have taken over my life. However, a few weeks ago I wrote down ALL the symptoms from big to small that I had been living with, then a couple days ago wrote which had lessened or gone away. I realized I really have improved somewhat and I am terrified to try gluten ever again. I've also had some weird allergic-type reactions in my throat to some things (nuts, soy...) which make me quite nervous of them as well. "Roller-coaster" is a good word for this experience. Please hang in there. Your body may just need more time. Acupuncture helps-it REALLY does.

lisa

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    • Wheatwacked
      There is plenty of gluten food that is unplatable also. The trouble in restaurants is that wheat,  like the Frank's Hot Sauce commercial; "They throw that bleep on everything." In my opinion, the underlying problem is compromised immune system due to vitamin D deficiency and Green Revolution modern wheat.  50% of the industrialized world are vitamin D deficient and we are urged to avoid sun and limit oral vitamin D intake to the minimum.   Non Celiac Gluten Sensitivity became an official diagnosis only 10 years after modern wheat was marketed.
    • trents
      I understand from one of our forum moderators who is UK-based that the benefits of having an official celiac diagnosis varies depending on your postal code. So then, it must be a benefit tied to local government rather than national government.
    • Elliebee
      I think if I gave up gluten and got a negative blood result and stick with it rather than do the gluten challenge (even though I’ve got no symptoms.. yet).  think if I gave up gluten and got a negative blood result and stick with it rather than do the gluten challenge (even though I’ve got no symptoms.. yet). 
    • Scott Adams
      For anyone interested in research summaries on this topic we have this category: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/ 
    • trents
      Obviously, you have looked at all this from various angles and I respect that. But consider this, you could trial the gluten-free diet for six months to see if it results in lower ttg-iga scores. If so, it is another piece of evidence pointing to celiac disease. You could then go off the gluten fast and return to a gluten loaded diet for weeks or months and repeat the colonoscopy/endoscopy. My point is that trialing a gluten-free diet does not eliminate the possibility of getting valid celiac retesting at a late date if you are willing to engage with the gluten challenge.
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