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#1 jabaar

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Posted 11 June 2012 - 07:19 AM

Hello, my name is Tracy and I was diagnosed about 3 weeks ago with celiac. I have been on a gluten-free diet since then but I noticed that I am still extremely tired and it gets worse when i eat. Is this normal? If it is normal how long will it take for it to go away?
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#2 BabsV

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Posted 11 June 2012 - 07:42 AM

Hello, my name is Tracy and I was diagnosed about 3 weeks ago with celiac. I have been on a gluten-free diet since then but I noticed that I am still extremely tired and it gets worse when i eat. Is this normal? If it is normal how long will it take for it to go away?


Welcome, Tracy! You've come to the right place for support and information.

Hmmmm....not sure there really is a "normal" recovery for anyone here on the forums! It all depends on how sick you were prior to diagnosis, how your body heals, how strict you are about diet, accidental glutenings, etc.

I can tell you that the doctor who did my biopsy told me to give it 3-6 MONTHS for any sort of improvement and 6-12 months to see real improvement. I'm at almost 10 months gluten-free and while many of my symptoms have improved (or gone away entirely) I am not 100%.

Also, what are you eating? A lot of us find that going for natural whole foods helps us feel better especially right after diagnosis. Stick to meat, fish, eggs, nuts, fruits, veg, dairy (if you can tolerate it) and skip all the gluten-free replacement foods. Eat smaller meals more often throughout the day. I had to up my protein intake and spread it out throughout the day -- no more than 2-3 oz. at a time.

Have your vitamin levels been checked? Low levels can make you tired.

Have you cleaned out your kitchen? Replaced the toaster, wooden utensils, scratched pots, etc? Do you have a shared kitchen? Could you be getting cross contamination that way? What about medicines? If you take any have you checked their gluten status? And lipstick/lip balm? Toothpaste, mouthwash, etc?

Plus, gluten withdrawal...it was awful for me. That might be impacting how you feel also. It passed within about 2-3 weeks if I remember properly.

Good luck and stick with it!
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#3 BabsV

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Posted 11 June 2012 - 07:44 AM

I forgot to include this in my previous post. This is an AWESOME (!!!) post with tons of information that will be helpful to newly-diagnosed you. It was done by Irish Heart who is active in the forums and has been supportive to so many of us and so generous in sharing her knowledge.

http://www.celiac.co...ewbie-info-101/
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#4 saintmaybe

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Posted 11 June 2012 - 07:58 AM

I second everything babs said, especially giving yourself time and eating whole foods. You might also have additional food intolerances, which you can discover for yourself, or you can see a naturopath to help test for them.

One thing I will add is slow bile, which I thought was a load of hooey until my dad started getting gall bladder attacks. Good digestion is energetically expensive, and can be even more so without the proper bile salts. If you are eating a high fat, high cholesterol diet, which isn't necessarily a bad thing in the context of a diet like primal or Atkins, then you may need bile stimulating herbs or direct bile supplementation. Or a good digestive tea like stomach-ease. A natural foods store will have all of these, or they can be ordered online. Side benefit: extreme regularity. :-D
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#5 jabaar

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Posted 11 June 2012 - 08:29 AM

Welcome, Tracy! You've come to the right place for support and information.

Hmmmm....not sure there really is a "normal" recovery for anyone here on the forums! It all depends on how sick you were prior to diagnosis, how your body heals, how strict you are about diet, accidental glutenings, etc.

I can tell you that the doctor who did my biopsy told me to give it 3-6 MONTHS for any sort of improvement and 6-12 months to see real improvement. I'm at almost 10 months gluten-free and while many of my symptoms have improved (or gone away entirely) I am not 100%.

Also, what are you eating? A lot of us find that going for natural whole foods helps us feel better especially right after diagnosis. Stick to meat, fish, eggs, nuts, fruits, veg, dairy (if you can tolerate it) and skip all the gluten-free replacement foods. Eat smaller meals more often throughout the day. I had to up my protein intake and spread it out throughout the day -- no more than 2-3 oz. at a time.

Have your vitamin levels been checked? Low levels can make you tired.

Have you cleaned out your kitchen? Replaced the toaster, wooden utensils, scratched pots, etc? Do you have a shared kitchen? Could you be getting cross contamination that way? What about medicines? If you take any have you checked their gluten status? And lipstick/lip balm? Toothpaste, mouthwash, etc?

Plus, gluten withdrawal...it was awful for me. That might be impacting how you feel also. It passed within about 2-3 weeks if I remember properly.

Good luck and stick with it!


Thanks for responding! I actually have had trouble figuring what to eat so I have been eating alot of ground turkey.I eat it with salads and sometimes vegetables. I do ahve some gluten free muffins (Udi's) and rice chex cereal that I snack on. I make smoothies with frozen fruit and I use almond milk. I ahve talked to several people who had major stomach issues with celiac but I didn't have that. I had extreme tiredness and fatigue that comes with. I use to get heartburn alot as well. That's actually the only reason my doctor did the endoscopy because he thought I had a stomach ulcer but when the biopsy results came back it should I had some damaged villi. My vitamins levels have not been checked. I'm still using the same pots and eating utensils which I guess I need to change. I can say the heartburn is not there anymore which is good. I am just tired all the time. I am seeing a new gastro doc tomorrow because I wouls like to get his take on this. Hopefully he will do labs to check my vitamin levels. It is so hard for me to work like this.
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#6 Dugudugu

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Posted 22 June 2012 - 07:05 PM

Welcome, Tracy! You've come to the right place for support and information.

Hmmmm....not sure there really is a "normal" recovery for anyone here on the forums! It all depends on how sick you were prior to diagnosis, how your body heals, how strict you are about diet, accidental glutenings, etc.

I can tell you that the doctor who did my biopsy told me to give it 3-6 MONTHS for any sort of improvement and 6-12 months to see real improvement. I'm at almost 10 months gluten-free and while many of my symptoms have improved (or gone away entirely) I am not 100%.

Also, what are you eating? A lot of us find that going for natural whole foods helps us feel better especially right after diagnosis. Stick to meat, fish, eggs, nuts, fruits, veg, dairy (if you can tolerate it) and skip all the gluten-free replacement foods. Eat smaller meals more often throughout the day. I had to up my protein intake and spread it out throughout the day -- no more than 2-3 oz. at a time.

Have your vitamin levels been checked? Low levels can make you tired.

Have you cleaned out your kitchen? Replaced the toaster, wooden utensils, scratched pots, etc? Do you have a shared kitchen? Could you be getting cross contamination that way? What about medicines? If you take any have you checked their gluten status? And lipstick/lip balm? Toothpaste, mouthwash, etc?

Plus, gluten withdrawal...it was awful for me. That might be impacting how you feel also. It passed within about 2-3 weeks if I remember properly.

Good luck and stick with it!


Thank you BabsV for this information. This is my first post here on the board, and I am approximately 3 weeks gluten free. I have no improvements at all, instead a few days ago I got a huge allergic reaction to (I think) Sunquick lemonade and I am on prednison. When I read other's posts writing they improve within days to weeks, I get desperate. After reading your post I guess I have to give it a lot more time.

Celiac is ruled out, but as my B12 and IgA are very low, gluten intolerantly is suspected, so that's why I started gluten free. Nothing to lose eh? For more than 10 yrs I am complaining about tiredness, started working part-time a few years ago because I lacked the energy to work full-time, and still the brain fog is getting worse and worse by the month. I am kinda lost.
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#7 ~**caselynn**~

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Posted 22 June 2012 - 07:41 PM

Welcome, Tracy! You've come to the right place for support and information.

Hmmmm....not sure there really is a "normal" recovery for anyone here on the forums! It all depends on how sick you were prior to diagnosis, how your body heals, how strict you are about diet, accidental glutenings, etc.

I can tell you that the doctor who did my biopsy told me to give it 3-6 MONTHS for any sort of improvement and 6-12 months to see real improvement. I'm at almost 10 months gluten-free and while many of my symptoms have improved (or gone away entirely) I am not 100%.

Also, what are you eating? A lot of us find that going for natural whole foods helps us feel better especially right after diagnosis. Stick to meat, fish, eggs, nuts, fruits, veg, dairy (if you can tolerate it) and skip all the gluten-free replacement foods. Eat smaller meals more often throughout the day. I had to up my protein intake and spread it out throughout the day -- no more than 2-3 oz. at a time.

Have your vitamin levels been checked? Low levels can make you tired.

Have you cleaned out your kitchen? Replaced the toaster, wooden utensils, scratched pots, etc? Do you have a shared kitchen? Could you be getting cross contamination that way? What about medicines? If you take any have you checked their gluten status? And lipstick/lip balm? Toothpaste, mouthwash, etc?

Plus, gluten withdrawal...it was awful for me. That might be impacting how you feel also. It passed within about 2-3 weeks if I remember properly.

Good luck and stick with it!


I'll third that for Babs!! Lol great points. I'll add that when I got diagnosed I went straight to whole foods, mostly because I knew that the chance of finding gluten there was next to none. Fruits. Veggies, nuts, seeds, lean meats no processing. I used to eat dairy but I found that bothers me so I keep it to a bare minimum of Greek yogurt once a day. Get your vitamins in, and be sure you're giving your body time to catch up, remember, it's got to make up for all the non gluten-free years!! I do try to exercise everyday if possible, work up to that. I hear that yoga does wonders for the digestive tract, it's on my list to do soon. Good luck to you, and by all means speak up if you have any more questions! :)
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~**caselynn**~

#8 ~**caselynn**~

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Posted 22 June 2012 - 07:44 PM

Thank you BabsV for this information. This is my first post here on the board, and I am approximately 3 weeks gluten free. I have no improvements at all, instead a few days ago I got a huge allergic reaction to (I think) Sunquick lemonade and I am on prednison. When I read other's posts writing they improve within days to weeks, I get desperate. After reading your post I guess I have to give it a lot more time.

Celiac is ruled out, but as my B12 and IgA are very low, gluten intolerantly is suspected, so that's why I started gluten free. Nothing to lose eh? For more than 10 yrs I am complaining about tiredness, started working part-time a few years ago because I lacked the energy to work full-time, and still the brain fog is getting worse and worse by the month. I am kinda lost.


Just a thought, have you been checked for Crohn's Disease? It's another small bowel disease and your low B-12 is what caught my eye. That is a classic sign of Crohn's due to the inflammation and damage to the Ileum, which is where B-12 is absorbed, causing malabsorption.(Sorry for the medical talk lol ) idk if that will help, good luck!
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~**caselynn**~

#9 GFinDC

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Posted 23 June 2012 - 09:10 AM

Thank you BabsV for this information. This is my first post here on the board, and I am approximately 3 weeks gluten free. I have no improvements at all, instead a few days ago I got a huge allergic reaction to (I think) Sunquick lemonade and I am on prednison. When I read other's posts writing they improve within days to weeks, I get desperate. After reading your post I guess I have to give it a lot more time.

Celiac is ruled out, but as my B12 and IgA are very low, gluten intolerantly is suspected, so that's why I started gluten free. Nothing to lose eh? For more than 10 yrs I am complaining about tiredness, started working part-time a few years ago because I lacked the energy to work full-time, and still the brain fog is getting worse and worse by the month. I am kinda lost.


Hi Dugudugu, welcome to our little corner of the web!

You may not test positive for celiac, but many people here didn't test positive and yet improved greatly after going gluten-free. The celiac tests are not perfect, although positive tests are almost always right, the negatives results have a poor accuracy.

One term used for people who have problems with gluten but "fail" the celiac tests is NCGI (non-celaic gluten intolerance). NCGI is not testable right now, but there was a study being done on it that shows it is real. Some people think NCGI is a precurser to celiac.

Just a thought, have you been checked for Crohn's Disease? It's another small bowel disease and your low B-12 is what caught my eye. That is a classic sign of Crohn's due to the inflammation and damage to the Ileum, which is where B-12 is absorbed, causing malabsorption.(Sorry for the medical talk lol ) idk if that will help, good luck!


Lots of new people around! That's great! Getting your vitmain and mineral levels checked is a good idea. B-12 can be low with celiac also. And D and E and etc.. Malbsorbtion is a real problem for us.

Here's some getting started threads for fun time reading:

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Some threads with good info:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Celiac Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 Dugudugu

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Posted 23 June 2012 - 02:50 PM

@GFinDC
Thank you. I am following the forum for almost two months, thanks to the daily twitter feeds. I'll make a new topic when I feel better (I am having a huge allergic reaction to ???)(started a food log today as symptoms worsened). Thing is that my blood is perfectly okay, except the low IgA and B12 levels. The doctors don't know what to do with me, so for now I am labeled with 'Chronic Fatigue Disease'.

@~**caselynn**~
Thank you. I did crossed my mind, but I don't recognize the other symptoms except being tired. Will put it on the table when I'll go to the 3rd specialist soon. Funny thing is that I did those Crohn-xrays by others as I am a xray tech ;) .

But again, I'll make a new topic, I've lots to tell. Won't spoil Jabaar's post.

Dear all, thank you very much for now. So much appreciated!
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#11 ~**caselynn**~

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Posted 23 June 2012 - 06:44 PM

@GFinDC
Thank you. I am following the forum for almost two months, thanks to the daily twitter feeds. I'll make a new topic when I feel better (I am having a huge allergic reaction to ???)(started a food log today as symptoms worsened). Thing is that my blood is perfectly okay, except the low IgA and B12 levels. The doctors don't know what to do with me, so for now I am labeled with 'Chronic Fatigue Disease'.

@~**caselynn**~
Thank you. I did crossed my mind, but I don't recognize the other symptoms except being tired. Will put it on the table when I'll go to the 3rd specialist soon. Funny thing is that I did those Crohn-xrays by others as I am a xray tech ;) .

But again, I'll make a new topic, I've lots to tell. Won't spoil Jabaar's post.

Dear all, thank you very much for now. So much appreciated!


No way! I'm an X-ray/ct tech too!!! Awesome!
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~**caselynn**~

#12 GFinDC

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Posted 24 June 2012 - 04:50 AM

Well, two X-ray techs in one thread! We'll have to start wearing lead vests when read the forum.. :D

Good to have you both here!
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#13 ~**caselynn**~

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Posted 24 June 2012 - 05:30 AM

Hahaha thank you! 😄
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~**caselynn**~

#14 Dugudugu

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Posted 29 June 2012 - 02:49 PM

Well, two X-ray techs in one thread! We'll have to start wearing lead vests when read the forum.. :D

Good to have you both here!


LOL :P
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