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Hi all! I was diagnosed with Celiac Disease about a year and a half ago. My digestive symptoms cleared up quite soon after I began eating gluten free. However, I’m still struggling with fatigue and a few other things. Not sure if this is Celiac related or if something else is going on. I’ve been told by my GP as well as my gastroenterologist that if I’m on a strict gluten free diet I should basically feel like any other “normal” person. I’ve been noticing several people posting about continuing to have issues years after diagnosis. Is it normal for some symptoms to continue even after diagnosis and treatment? I realize I may still be in the gut-healing process but should I expect this to get better or is it normal to have lingering symptoms?

 

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Welcome to the board. Did they rerun the celiac panel to make sure that some gluten isn't sneaking in somewhere? Have the doctors checked your vitamin and mineral levels?  If not it would be a good idea. Make sure they check your levels for iron, the B's including B12, and D at the very least.  It would also be a good idea to make sure they have checked your thyroid. It can take some time to heal for some longer than others. Some of us also have other intolerances a couple of the most common are soy and dairy (both lactose and or casien).

I hope you are feeling better soon.

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15 minutes ago, ravenwoodglass said:

Welcome to the board. Did they rerun the celiac panel to make sure that some gluten isn't sneaking in somewhere? Have the doctors checked your vitamin and mineral levels?  If not it would be a good idea. Make sure they check your levels for iron, the B's including B12, and D at the very least.  It would also be a good idea to make sure they have checked your thyroid. It can take some time to heal for some longer than others. Some of us also have other intolerances a couple of the most common are soy and dairy (both lactose and or casien).

I hope you are feeling better soon.

Thanks for the welcome! They haven't run a Celiac panel since I got diagnosed. I'm currently doing an elimination diet to be sure that there isn't another food that's causing the fatigue. My B levels were normal and so were thyroid levels. I had a D deficiency and have been taking supplements to help with it.  I'm not certain about iron levels so I may ask them to test that next time I go to the Dr. 

Thank you for the feedback! ?

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On 3/3/2017 at 3:25 PM, Rebeccalee1991 said:

Thanks for the welcome! They haven't run a Celiac panel since I got diagnosed. I'm currently doing an elimination diet to be sure that there isn't another food that's causing the fatigue. My B levels were normal and so were thyroid levels. I had a D deficiency and have been taking supplements to help with it.  I'm not certain about iron levels so I may ask them to test that next time I go to the Dr. 

Thank you for the feedback! ?

You mention that you are doing an elimination diet.  Are you being guided by a doctor or a nutrtionist? Some folks will do one on their own and end up eating just rice and chicken, for example, and end up not taking in enough nutrients, protein etc. I did an elimaination guided by an allergist who formulated the starting point to ensure enough calories, protein and vitamins. If you need to do it on your own make sure your plate is colorful.  As an example my starting point was turkey, rice, sweet potatoes, peas and pineapple with only cranberry juice and water as a beverage.

I hope you atart feeling better soon.

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5 hours ago, ravenwoodglass said:

You mention that you are doing an elimination diet.  Are you being guided by a doctor or a nutrtionist? Some folks will do one on their own and end up eating just rice and chicken, for example, and end up not taking in enough nutrients, protein etc. I did an elimaination guided by an allergist who formulated the starting point to ensure enough calories, protein and vitamins. If you need to do it on your own make sure your plate is colorful.  As an example my starting point was turkey, rice, sweet potatoes, peas and pineapple with only cranberry juice and water as a beverage.

I hope you atart feeling better soon.

My Dr. suggested that I do the elimination diet but certainly didn't give me as much guidance as I would have liked. I've been doing a lot of studying up on elimination diets as a result. I definitely wasn't getting enough calories for a while at the very beginning but I've been able to figure out more ways to get more calories in now. My dr is hoping that the elimination diet will help me figure out if I have any food sensitivities but I haven't noticed a big difference yet so I'm thinking it may be something else. That's why I was curious if Celiac can cause that even when I'm not getting any gluten in my diet. Do Celiac people just have fatigue regardless of diet? 

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Hi Rebeccalee,

It's so frustrating to be dismissed by the people who are supposed to be helping us. I'm sorry.

I haven't been gluten-free as long as you, but I'm dealing with this too. I went to a very basic diet when I was diagnosed but foods that were fine are now giving me trouble. Fruit and sweet potatoes to be specific.

There's a hydrogen breath test that is used to diagnose H pylori infection, carbohydrate malabsorption, and SIBO. There's also fructose malabsorption and pancreatic issues that have similar symptoms since you had your thyroid and Vit D checked. 

I don't know how helpful this is, but good luck! We have to be our own doctors and detectives so often. 

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33 minutes ago, Sara789 said:

Hi Rebeccalee,

It's so frustrating to be dismissed by the people who are supposed to be helping us. I'm sorry.

I haven't been gluten-free as long as you, but I'm dealing with this too. I went to a very basic diet when I was diagnosed but foods that were fine are now giving me trouble. Fruit and sweet potatoes to be specific.

There's a hydrogen breath test that is used to diagnose H pylori infection, carbohydrate malabsorption, and SIBO. There's also fructose malabsorption and pancreatic issues that have similar symptoms since you had your thyroid and Vit D checked. 

I don't know how helpful this is, but good luck! We have to be our own doctors and detectives so often. 

Thanks for the advice! I will look into the breath test and the fructose malabsorption and pancreatic issues. 

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My advice is to run a celiac antibodies test too.   I thought for sure  that I developed SIBO, but antibodies testing revealed that gluten was the source of my symptoms.  At least rule that out first, as you should have it done annually as a standard management of care for celiac disease.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

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15 minutes ago, cyclinglady said:

My advice is to run a celiac antibodies test too.   I thought for sure  that I developed SIBO, but antibodies testing revealed that gluten was the source of my symptoms.  At least rule that out first, as you should have it done annually as a standard management of care for celiac disease.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Okay, I will ask my dr to do that next time I go in. Thanks!

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Hi welcome. The above posters gave great advice. For me fatigue is an issue after cc or celiac testing. My thyroid (even if I'm concerned at 3 different intervals of concern in life) checks out fine. I suspect I am thyroid level sensitive and pick up subtle variations the DR test does not . Possibly subclinical. It's related to gluten. My opinion .

I have a history of vitamin D deficency and when my levels get a good rating I'm maintaining my 10,000  IU / day of D3 supplementation. In addition to the D3 I take probiotic, a multi/mineral, and fish or flax oil for omega 3. The b' s are important too. My b-12 is fine for me personally  but Low B-12 or folic acid is common. I have had low folic in past. If you are still menstruating but a b deficency is not found upon testing look out for low B's a few days prior to menses ( beyond what the standard vitamin addresses) example 3 days before flow the body's demand for b' s can be higher than what one may consume or supplement. PMS like symptoms may rear it's head, the body may be asking for more b vitamins and magnesium intake. (Again this is my opinion and an MD May not even find this valid issue to pursue but not all MD's pursue nutrition study beyond med school) B vitamins are water soluble as opposed to fat soluble,  but B6 is the exception from an RDA  dosing  standpoint so additional B6 beyond your supplement from foods is prudent.

Fatigue can be pervasive for me since I went gluten-free if I get cc or undergoing celiac testing/ gluten diet. Corn after 2016 gluten challenge became a huge problem, my joints and muscle aches are pervasive with corn cc exposure now. I dropped 8 foods for a time and am mostly Paleo / non processed foods because I'm far from where I know/ I should /want to be.

Fatigue is huge for me. So I respectfully and politely disagree with your Dr. Fatigue can linger for a celiac or ncgs. The body needs rest/sleep to heal for the norm and certainly for a celiac/ncgs in recovery  especially for one (goodness knows how long was undiagnosed. )

If gluten is ruled out as a cc my opinion look for other foods as culprit, supplement your vitamins/minerals. I spent 3 months just juicing my fruit and veggies, 2 meals a day since my digestion was off from my gluten challenge. I focused on green veggies and anti inflammatory fruits or those with natural enzymes to support my digestion. Protein is important too, but I find I had to initially halve the normal portion to enable me to digest. Chew thoroughly to aid gi tract digestion.  That protein had to be broken down to amino acids but the biochemical process was a digestive challenge post gluten challenge for me. I could not handle/ digest fats/ carbs or high starches for sometime it was taxing to my system post gluten challenge. If my system was taxed digesting it required rest . The indicator for me from my body was I'm taxed , symptom= fatigue.

Lastly, I suggest rotating foods so the immune system sent in overdrive does not pick a new target when gluten is removed. I would plan my meals like a schedule to rotate and not repeat a food too often . Example food not repeated for 2-3 days . Example rice on Monday no rice again until Thursday. This also helps to insure you vary the vitamin content of foods. Think colors red Monday, blue Tuesday, green Wednesdays etc. That way you get a variety and don't repeat too frequently. To help your fatigue prep them and freeze less to worry about if any given day is a good or bad fatigue day.

Gluten is my enemy and I no longer tolerate corn,I avoid most grains, and I find while I can handle carbs/ starches keeping them low is best on my system for now. 2016 was my gluten challenge year after 3 years of blissful self imposed gluten-free. It is a daunting task to claw my way back fatigue and all. I have no choice.

I hope your fatigue lifts soon. Good luck.

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Hi Rebecca,

Another thing to try is going caffeine free.  Caffeine can make people tired.   You might also want to check your vitamin pills to make sure they have some selenium in them.  Selenium is needed for some hormones produced by the body.

Vitamin D deficiency can have a big affect also.  So if you get that under control things may improve too.

Symptoms can go on for years during recovery.  Sometimes there are other food intolerances that crop up, either permanent or temporary.  Your elimination diet should help find those if they exist.

Also 10% or so of us react to oats like we do other gluten.  So that's something to test by elimination.

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8 hours ago, Awol cast iron stomach said:

Hi welcome. The above posters gave great advice. For me fatigue is an issue after cc or celiac testing. My thyroid (even if I'm concerned at 3 different intervals of concern in life) checks out fine. I suspect I am thyroid level sensitive and pick up subtle variations the DR test does not . Possibly subclinical. It's related to gluten. My opinion .

I have a history of vitamin D deficency and when my levels get a good rating I'm maintaining my 10,000  IU / day of D3 supplementation. In addition to the D3 I take probiotic, a multi/mineral, and fish or flax oil for omega 3. The b' s are important too. My b-12 is fine for me personally  but Low B-12 or folic acid is common. I have had low folic in past. If you are still menstruating but a b deficency is not found upon testing look out for low B's a few days prior to menses ( beyond what the standard vitamin addresses) example 3 days before flow the body's demand for b' s can be higher than what one may consume or supplement. PMS like symptoms may rear it's head, the body may be asking for more b vitamins and magnesium intake. (Again this is my opinion and an MD May not even find this valid issue to pursue but not all MD's pursue nutrition study beyond med school) B vitamins are water soluble as opposed to fat soluble,  but B6 is the exception from an RDA  dosing  standpoint so additional B6 beyond your supplement from foods is prudent.

Fatigue can be pervasive for me since I went gluten-free if I get cc or undergoing celiac testing/ gluten diet. Corn after 2016 gluten challenge became a huge problem, my joints and muscle aches are pervasive with corn cc exposure now. I dropped 8 foods for a time and am mostly Paleo / non processed foods because I'm far from where I know/ I should /want to be.

Fatigue is huge for me. So I respectfully and politely disagree with your Dr. Fatigue can linger for a celiac or ncgs. The body needs rest/sleep to heal for the norm and certainly for a celiac/ncgs in recovery  especially for one (goodness knows how long was undiagnosed. )

If gluten is ruled out as a cc my opinion look for other foods as culprit, supplement your vitamins/minerals. I spent 3 months just juicing my fruit and veggies, 2 meals a day since my digestion was off from my gluten challenge. I focused on green veggies and anti inflammatory fruits or those with natural enzymes to support my digestion. Protein is important too, but I find I had to initially halve the normal portion to enable me to digest. Chew thoroughly to aid gi tract digestion.  That protein had to be broken down to amino acids but the biochemical process was a digestive challenge post gluten challenge for me. I could not handle/ digest fats/ carbs or high starches for sometime it was taxing to my system post gluten challenge. If my system was taxed digesting it required rest . The indicator for me from my body was I'm taxed , symptom= fatigue.

Lastly, I suggest rotating foods so the immune system sent in overdrive does not pick a new target when gluten is removed. I would plan my meals like a schedule to rotate and not repeat a food too often . Example food not repeated for 2-3 days . Example rice on Monday no rice again until Thursday. This also helps to insure you vary the vitamin content of foods. Think colors red Monday, blue Tuesday, green Wednesdays etc. That way you get a variety and don't repeat too frequently. To help your fatigue prep them and freeze less to worry about if any given day is a good or bad fatigue day.

Gluten is my enemy and I no longer tolerate corn,I avoid most grains, and I find while I can handle carbs/ starches keeping them low is best on my system for now. 2016 was my gluten challenge year after 3 years of blissful self imposed gluten-free. It is a daunting task to claw my way back fatigue and all. I have no choice.

I hope your fatigue lifts soon. Good luck.

Thanks for the advice!

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1 hour ago, GFinDC said:

Hi Rebecca,

Another thing to try is going caffeine free.  Caffeine can make people tired.   You might also want to check your vitamin pills to make sure they have some selenium in them.  Selenium is needed for some hormones produced by the body.

Vitamin D deficiency can have a big affect also.  So if you get that under control things may improve too.

Symptoms can go on for years during recovery.  Sometimes there are other food intolerances that crop up, either permanent or temporary.  Your elimination diet should help find those if they exist.

Also 10% or so of us react to oats like we do other gluten.  So that's something to test by elimination.

I haven't heard of selenium before but will look into it. Caffeine is one of the things I eliminated on my diet and I haven't added it back in yet so we'll see!

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The elimination diet won't show you anything while the food is eliminated... it's when you add back 1 at a time that you will know the offender.  We did this last fall and were surprised that my husband didn't react well to tomatoes and eggs.  He can now eat eggs, but not 3 days in a row.  You will find out how much your system will tolerate before giving you symptoms.  We have cut out grains entirely now.  Low carb/high fat/mod protein seems to agree best with us and is stabilizing my weight... finally!

Debbie

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14 hours ago, deb_rn said:

The elimination diet won't show you anything while the food is eliminated... it's when you add back 1 at a time that you will know the offender.  We did this last fall and were surprised that my husband didn't react well to tomatoes and eggs.  He can now eat eggs, but not 3 days in a row.  You will find out how much your system will tolerate before giving you symptoms.  We have cut out grains entirely now.  Low carb/high fat/mod protein seems to agree best with us and is stabilizing my weight... finally!

Debbie

Yes, I'm hoping if I do have a food sensitivity that it will be really obvious once I add that food back in that it's the problem. 

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On ‎2017‎-‎03‎-‎07 at 1:08 AM, Awol cast iron stomach said:

Hi welcome. The above posters gave great advice. For me fatigue is an issue after cc or celiac testing. My thyroid (even if I'm concerned at 3 different intervals of concern in life) checks out fine. I suspect I am thyroid level sensitive and pick up subtle variations the DR test does not . Possibly subclinical. It's related to gluten. My opinion .

I have a history of vitamin D deficency and when my levels get a good rating I'm maintaining my 10,000  IU / day of D3 supplementation. In addition to the D3 I take probiotic, a multi/mineral, and fish or flax oil for omega 3. The b' s are important too. My b-12 is fine for me personally  but Low B-12 or folic acid is common. I have had low folic in past. If you are still menstruating but a b deficency is not found upon testing look out for low B's a few days prior to menses ( beyond what the standard vitamin addresses) example 3 days before flow the body's demand for b' s can be higher than what one may consume or supplement. PMS like symptoms may rear it's head, the body may be asking for more b vitamins and magnesium intake. (Again this is my opinion and an MD May not even find this valid issue to pursue but not all MD's pursue nutrition study beyond med school) B vitamins are water soluble as opposed to fat soluble,  but B6 is the exception from an RDA  dosing  standpoint so additional B6 beyond your supplement from foods is prudent.

Fatigue can be pervasive for me since I went gluten-free if I get cc or undergoing celiac testing/ gluten diet. Corn after 2016 gluten challenge became a huge problem, my joints and muscle aches are pervasive with corn cc exposure now. I dropped 8 foods for a time and am mostly Paleo / non processed foods because I'm far from where I know/ I should /want to be.

Fatigue is huge for me. So I respectfully and politely disagree with your Dr. Fatigue can linger for a celiac or ncgs. The body needs rest/sleep to heal for the norm and certainly for a celiac/ncgs in recovery  especially for one (goodness knows how long was undiagnosed. )

If gluten is ruled out as a cc my opinion look for other foods as culprit, supplement your vitamins/minerals. I spent 3 months just juicing my fruit and veggies, 2 meals a day since my digestion was off from my gluten challenge. I focused on green veggies and anti inflammatory fruits or those with natural enzymes to support my digestion. Protein is important too, but I find I had to initially halve the normal portion to enable me to digest. Chew thoroughly to aid gi tract digestion.  That protein had to be broken down to amino acids but the biochemical process was a digestive challenge post gluten challenge for me. I could not handle/ digest fats/ carbs or high starches for sometime it was taxing to my system post gluten challenge. If my system was taxed digesting it required rest . The indicator for me from my body was I'm taxed , symptom= fatigue.

Lastly, I suggest rotating foods so the immune system sent in overdrive does not pick a new target when gluten is removed. I would plan my meals like a schedule to rotate and not repeat a food too often . Example food not repeated for 2-3 days . Example rice on Monday no rice again until Thursday. This also helps to insure you vary the vitamin content of foods. Think colors red Monday, blue Tuesday, green Wednesdays etc. That way you get a variety and don't repeat too frequently. To help your fatigue prep them and freeze less to worry about if any given day is a good or bad fatigue day.

Gluten is my enemy and I no longer tolerate corn,I avoid most grains, and I find while I can handle carbs/ starches keeping them low is best on my system for now. 2016 was my gluten challenge year after 3 years of blissful self imposed gluten-free. It is a daunting task to claw my way back fatigue and all. I have no choice.

I hope your fatigue lifts soon. Good luck

What do you mean...."2016 was my Gluten Challenge year"?  Is that the year that you introduced Gluten back in?  Does everyone do that?

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On 3/11/2017 at 10:15 PM, Mermaid's Mom said:

What do you mean...."2016 was my Gluten Challenge year"?  Is that the year that you introduced Gluten back in?  Does everyone do that?

A gluten challenge is the name for reintroducing gluten to the diet in order that celiac tests can be ran. For the test to be effective the patient must be eating gluten for a significant period. If you've been gluten free for some time it's certainly a challenge!

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I would never do a gluten challenge... EVER!  Gluten is an irritant to everyone, to some degree.  I didn't have all the tests and knew I felt better without it, so what was the point in a biopsy?  Since then we have gone KETO and won't look back at all those non-gluten starches.  Life is a journey... it's interesting how and where we are led!  I thought giving up gluten would be hard, but it wasn't.  Next I thought giving up dairy, corn, tomatoes, potatoes, all grains would be hard... it wasn't.  You learn as time goes on what makes you feel BETTER and what makes you feel WORSE!  The key is listening to your body's clues.  We humans are good at ignoring symptoms.  They are there for a reason... to warn us.

Debbie

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