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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.

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.

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

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?

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

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.

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

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.

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!

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.

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

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

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!

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.

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 -

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?

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

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. :)

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).

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.

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.
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...

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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    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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