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10 Months Gluten Free And Still Not Recovered
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The only reason they finally discovered my Celiac is because I had a HUGE iron deficiency. I don't know what your main illness issues are, but I was so tired all the time that I would literally fall asleep anywhere at anytime...even driving. I am some better now after two months, but not even close to "normal". I don't think my intolerance is quite as touchy, but I was told to allow NO WHEAT, BARLEY, OR RYE into my diet...and I think I am pretty conscientious. Also, the labels on food are really sketchy. They are required to list if WHEAT is in the ingredients in ANY FORM, but not barley and rye. So if you don't know all the aliases for barley and rye, you could be getting gluten when you don't even know it. I am finding this easier to deal with than I thought...but still very limiting. Good luck.

SheriB, you know, the iron thing could be a bit of the problem. Iron was one of the things that the docs didn't test for. It seems like something that would be pretty standard to test for in my thinking.

I think I'm going to go to a general practitioner and see if they will do some of these tests that I couldn't get the specialists to do - a GP seems to often be a little more willing to work with the patient.

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Thanks for replying, adab8ca. It actually doesn't discourage me to hear that it might take a year or more, I am looking for just that sort of thing. So far I don't think I have read of any one personally taking this long to start to feel better. Some people say they took a "long" time at 6 to 8 months, but I have yet to hear of someone taking longer than 8 months.

Thanks for the encouragement and I hope you figure out what is wrong with you and that it doesn't take as long to heal for you.

When are you supposed to have the biopsy?

Hi, I have been on gluten free diet for last 2 yrs and my ttg IgA is just increasing...there is improvement in terms of symptoms like wt gain but i have also got high TSH (normal T3 and T4 as of now)...No RA, Diabetics...so I am still wondering wat is causing rise in ttg...have also started a new threat for d same and have mentioned detailed blood work...overall, 2 yrs but yet to recover in terms of antibodies count :(

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hi Garys girl,

Wish I could be of help but I'm like you, playing the waiting game.

I've had the brainfog for 12 yrs now. For me that is the hardest part. I don't think I'd be so tired all the time if it weren't for that. But, going gluten-free, milk free & corn free has given me hope. I'm not as depressed because I feel like I finally found what's wrong... The wait is hard though... It's been 2 months, proud of myself... I think one of the hardest parts is feeling awful & no one understands. My husband doesn't get it. I keep busy I think mostly because I feel like if I sit & relax, I won't want to get up again. Anyhow, just wanted to let you know I know how you feel :)

Oh, btw, I found that taking Folic Acid makes me break out... Not sure why... I read on others replies on having high Folic Acid... Is that without taking vitamins?

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Hi, I have been on gluten free diet for last 2 yrs and my ttg IgA is just increasing...there is improvement in terms of symptoms like wt gain but i have also got high TSH (normal T3 and T4 as of now)...No RA, Diabetics...so I am still wondering wat is causing rise in ttg...have also started a new threat for d same and have mentioned detailed blood work...overall, 2 yrs but yet to recover in terms of antibodies count :(

Hi Keshav, I am sorry to hear that your numbers are rising even though you have been on a gluten free diet. I went to the thread you started and read it, I don't have enough experience to know what all of the test result mean, but keep pursuing it.

So are you still having symptoms? It would seem that if something is wrong you would be displaying symptoms of some sort. I wasn't sure from your post if you completely recovered after going gluten free or if some of the symptoms did not resolve.

If you still are having symptoms, what are they?

When I went off of gluten I only noticed a very little improvement at first and withing a couple of months I was feeling even worse and I have not gotten any better since (it has almost been 11 months that I have been off of gluten).

I have been reading a lot about SIBO and treating it with the specific carbohydrate diet and I think that is the next step I am going to take.

Please let me know if you figure anything out. I hope you do soon.

~Sarah

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hi Garys girl,

Wish I could be of help but I'm like you, playing the waiting game.

I've had the brainfog for 12 yrs now. For me that is the hardest part. I don't think I'd be so tired all the time if it weren't for that. But, going gluten-free, milk free & corn free has given me hope. I'm not as depressed because I feel like I finally found what's wrong... The wait is hard though... It's been 2 months, proud of myself... I think one of the hardest parts is feeling awful & no one understands. My husband doesn't get it. I keep busy I think mostly because I feel like if I sit & relax, I won't want to get up again. Anyhow, just wanted to let you know I know how you feel :)

Oh, btw, I found that taking Folic Acid makes me break out... Not sure why... I read on others replies on having high Folic Acid... Is that without taking vitamins?

Tori, I totally hear you on the not being understood part - it leave us feeling really alone, not only are we sick, but people act like it is no big deal. It's hard, really hard. One thing that helps me is to remember that I don't want others to experience this and unless they do they really can't understand what it is like to be alive, but feel like you may never get to truly live again. I often wish that I had a friend that would just be there for me, but everybody else just keeps living their life and I feel like I'm on the sidelines - just watching and wishing that I could join.

One thing that I have realized form my experience is that people who have chronic illness really need people to just be there and support them - just be a friend. I hope that I don't forget that when I start feeling better, because if I know anyone else going through something like this I don't want them to feel alone.

Oh, sorry, I didn't mean to ramble on about all that stuff :P . I just wanted to tell you I know how it feels to feel alone and the struggles that come with it.

About the folic acid thing - I was just taking a multi vitamin, so I was not take any more than I should have. My doctor check my levels of it and they were really high. She said that high level pretty much always mean a bacterial overgrowth problem. Which I am sure that i have because I keep getting reacurring yeast infections. I never connected it but a little while before I knew that i had bacterial problems I started breaking out and I hadn't really had a problem with that for years. Interesting... I wonder if some how high levels of folic acid are realated to that.

As I mentioned to a previous poster, I think I am going to try the specific carbohydrate diet. It sounds like something that could really help with my situation.

Oh yeah, I was wondering if you have had any improvement since going gluten free.

I really hope you get better soon!

~Sarah

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gf_soph, no worries about the post being long. I really appreciate you (and all the others :)) taking the time to share your story and knowledge with me. I haven't heard specifically about the chemicals in specific foods before.

Is it chemicals that occur naturally in the foods or is it pesticides or some such thing? My sister has multiple chemical syndrome, so I am aware very much of environmental chemicals and I know that I react badly to most. I try to eat as organic as possible, but I get the impression that you are talking more about naturally occurring chemicals.

Sarah

yep, i'm talking about natural chemicals - salicylates, amines and glutamates, and while on the elimination diet you also cut out most preservatives and colourings. I recently challenged salicylates, and boy did I react!

Ironically organic foods can be higher in these chemicals - salicylates are like the foods own pesticide, so you get higher leves if the food isn't grown with added pesticides. So if you did have a problems with salicylates, you would probably avoid or limit organic.

If you google RPA elimination diet or failsafe you can find some information about it.

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One thing that I have realized form my experience is that people who have chronic illness really need people to just be there and support them - just be a friend. I hope that I don't forget that when I start feeling better, because if I know anyone else going through something like this I don't want them to feel alone.

I learned this very valuable lesson when I was practically the only support person for the mother of my best friend who died; my friend's mother was very old, lived alone, had no one to talk to except her cat (thank God for the cat), and as her dementia progressed the important thing was just to have someone to talk to who understood where she had come from and where she was going. It was hard at first because I had to listen to a lot of the stories over and over again, but she never tired of telling them, and had a need to bear witness to what she had suffered, and she had suffered, and the good she had done in her life (and she had done a lot of good). I know this is a little off topic from gluten, but the same principles hold true: we need someone to listen to us and understand. That is why this forum is such a Godsend (and no, I am not a God believer, I use that term loosely in the universal God sense). The ability to be a listener and supporter is probably one of the most valuable functions we can perform. End of tonight's lecture :)

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yep, i'm talking about natural chemicals - salicylates, amines and glutamates, and while on the elimination diet you also cut out most preservatives and colourings. I recently challenged salicylates, and boy did I react!

Ironically organic foods can be higher in these chemicals - salicylates are like the foods own pesticide, so you get higher leves if the food isn't grown with added pesticides. So if you did have a problems with salicylates, you would probably avoid or limit organic.

If you google RPA elimination diet or failsafe you can find some information about it.

Thanks for the info!

Sarah

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I learned this very valuable lesson when I was practically the only support person for the mother of my best friend who died; my friend's mother was very old, lived alone, had no one to talk to except her cat (thank God for the cat), and as her dementia progressed the important thing was just to have someone to talk to who understood where she had come from and where she was going. It was hard at first because I had to listen to a lot of the stories over and over again, but she never tired of telling them, and had a need to bear witness to what she had suffered, and she had suffered, and the good she had done in her life (and she had done a lot of good). I know this is a little off topic from gluten, but the same principles hold true: we need someone to listen to us and understand. That is why this forum is such a Godsend (and no, I am not a God believer, I use that term loosely in the universal God sense). The ability to be a listener and supporter is probably one of the most valuable functions we can perform. End of tonight's lecture :)

Mushroom, reading this brought tears to my eyes - it made me think again of how many people are suffering and have suffered and I am so thankful for the people, like you :) , who are willing to be there for some one in need.

I totally agree - this forum is a Godsend. I have learned so much here and been encouraged by so many - even just reading other peoples posts when I haven't felt well enough to wright myself, has been an encouragement.

Thank you for sharing.

Sarah

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Hi Saraha,

One other place to look for problems is vitamin pills and medicines. It might be worth eliminating any vitamin pills for a week or 2 and see if it helps. Medicines of course you can check with the manufacturer for gluten free status. Also any flavored teas or coffees are worth eliminating for a couple weeks to see if it helps. Same with sodas and any alcoholic drinks.

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gf_soph, I would like to know a bit more about what you are eating and what to avoid. I am a new celiac and I am feeing so horrible everyday even though I have given up gluten. Like gary'sgirl, it is all neurological. I notice it is the worst about 30 minutes after I eat. I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy. The part where you said you curl up on the couch and cry sounds a lot like I feel everyday. I am going to the gastroenterologist tomorrow for the first time, hopefully he will give me some answers to why I am still feeling horrible, however if he doesn't I would like to try the diet that you are on to see if it is in alignment with my symptoms. Thanks for telling your story, it's good to know that there are other people out here who feel the same way that I do. If you could give me advice it would be much appreciated, my dog would appreciate it as well...I haven't walked him for months now :(

Thanks so much!

-Alyson

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I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy.

Quinoa is a source of problems for some here on the board - I know, I am one of them. Could you try Tinkyada brown rice pasta instead, perhaps?

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Hi Saraha,

One other place to look for problems is vitamin pills and medicines. It might be worth eliminating any vitamin pills for a week or 2 and see if it helps. Medicines of course you can check with the manufacturer for gluten free status. Also any flavored teas or coffees are worth eliminating for a couple weeks to see if it helps. Same with sodas and any alcoholic drinks.

Thanks for the suggestions GFinDC. I think I ruled out most of those things, but I probably should double check the supplements in case there is one I missed (I do take quite a few), but I think I called most of the companies already. I better go check...

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gf_soph, I would like to know a bit more about what you are eating and what to avoid. I am a new celiac and I am feeing so horrible everyday even though I have given up gluten. Like gary'sgirl, it is all neurological. I notice it is the worst about 30 minutes after I eat. I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy. The part where you said you curl up on the couch and cry sounds a lot like I feel everyday. I am going to the gastroenterologist tomorrow for the first time, hopefully he will give me some answers to why I am still feeling horrible, however if he doesn't I would like to try the diet that you are on to see if it is in alignment with my symptoms. Thanks for telling your story, it's good to know that there are other people out here who feel the same way that I do. If you could give me advice it would be much appreciated, my dog would appreciate it as well...I haven't walked him for months now :(

Thanks so much!

-Alyson

AlysonAnn, you sound like me. Fatigue/brainfog is my worst symptom. I often feel it worsen 15-30 minutes after eating. I'm gluten-free for 2 months now, still waiting for that miracle change to happen...

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Quinoa is a source of problems for some here on the board - I know, I am one of them. Could you try Tinkyada brown rice pasta instead, perhaps?

Quinoa is definitely a problem for me too.

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gf_soph, I would like to know a bit more about what you are eating and what to avoid. I am a new celiac and I am feeing so horrible everyday even though I have given up gluten. Like gary'sgirl, it is all neurological. I notice it is the worst about 30 minutes after I eat. I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy. The part where you said you curl up on the couch and cry sounds a lot like I feel everyday. I am going to the gastroenterologist tomorrow for the first time, hopefully he will give me some answers to why I am still feeling horrible, however if he doesn't I would like to try the diet that you are on to see if it is in alignment with my symptoms. Thanks for telling your story, it's good to know that there are other people out here who feel the same way that I do. If you could give me advice it would be much appreciated, my dog would appreciate it as well...I haven't walked him for months now :(

Thanks so much!

-Alyson

Not a problem. I am on my lunch break right now, so don't have time to write it out. Instead of adding it to this thread I might start a new one outlining the basics of the diet, look for something about RPA elimination diet. It's much easier for Aussies as our dieticians can access the information about the diet, I'm not sure it's so available overseas.

I will try to write it up in the next day or two.

My dog is loving the diet too, he's been getting 2 walks a day from me where before I was too out of it!

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
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