New To This, What Am I Missing ?

[Tbolt47]

I had a positive blood test for Celiac's  in the late fall of 2012 . Biopsy confirmed Celiac late December. The symptoms that brought me to my GP were as follows: intense pain on my right abdominal  side  , joints ached, moderate headache on left side ,chronic  loose stool, bloating and distenuated stomach, extreme fatigue, insomnia and I truly had  a very difficult time articulating my thoughts or finishing a sentence. One of the most profound changes was my mental health. Normally very sure of my decisions, I could not make one, and procrastinated. I become frustrated with nearly every normal daily activity. Every email needed to be read several times to comprehend, focusing during a conversation was impossible, I did not have the mental energy to execute simple directions to prepare a meal.

 

I started the Gluten Free diet prior to Xmas 2012. My success with this followed a slow learning curve. Eventually, my headache, joint pain , abdominal pain and insomnia were the first symptoms to gradually dissipate. I know I have inadvertently eaten gluten, the above symptoms return, although not with the same intensity.

 

I am 6.5 months into gluten-free however my mental acuity has not returned, and an unexplained underlying anxiety has replaced my normal personality. For the past 6 months,  I have exposed myself to 98-99 % less gluten than prior to my diagnosis. However, I am constantly exhausted, exercise( I run 20-25 miles a week for the past 35 years) use to elevate my mood and sharpen my focus, now it just fatigues me.

 

 

I  learned early on, I cannot eat at a restaurant, no matter the claim of being " Gluten Free ". Nor anyone else's cooking even though they make the same claim. Is it too early in the " healing process " too expect to feel better? I am moving in the right direction regarding the relief of my physical symptoms, however   mentally  I feel very dull and anxious .

 

My 6 mo. blood work number below:

IGA=17

IGG=8

TTG/IGA=48

TTG/IGG=7

 

 

 

 

 

[dilettantesteph]

It is still pretty early in the healing process.  My neurological symptoms took longer to heal.  Have you considered a produce and unprocessed meat diet?  That was helpful for me.  The fact that you had problems with eating at restaurants might indicate that you are more sensitive to cc than average.

[Tbolt47]

It is still pretty early in the healing process.  My neurological symptoms took longer to heal.  Have you considered a produce and unprocessed meat diet?  That was helpful for me.  The fact that you had problems with eating at restaurants might indicate that you are more sensitive to cc than average.

I have not thought about a " unprocessed meat and produce " diet. I certainly would consider it. I appreciate your insight. I have kept a food journal, however, it is difficult to pin down what the offending food(s).

[notme]

it is pretty early on, especially if you had been having symptoms left untreated for a long time.  i had this for 25 years, untreated, so i figure it's going to take awhile.  your nerves have to heal, too.  i'm 3 years in and still noticing improvement.  i don't eat alot of processed foods but i do eat some - the less ingredients, the better - food journal is always a good idea when you're trying to figure things out.  are there any times when you're feeling 'clearer' than others, or vice-versa?  it's boring, but you could do an elimination diet?

[Tbolt47]

it is pretty early on, especially if you had been having symptoms left untreated for a long time.  i had this for 25 years, untreated, so i figure it's going to take awhile.  your nerves have to heal, too.  i'm 3 years in and still noticing improvement.  i don't eat alot of processed foods but i do eat some - the less ingredients, the better - food journal is always a good idea when you're trying to figure things out.  are there any times when you're feeling 'clearer' than others, or vice-versa?  it's boring, but you could do an elimination diet?

Hello notme, It is good to hear you are moving in the right direction . You have given me pause for thought regarding the length of time I may have been unknowingly doing damage. A good number of years ago I received a diagnosis of  "Irritable bowel syndrome ". Also, I have seen a Dermatologist for what I now believe to have been Dermatitis Herpetiformis(the diag. was unexplained blistering rash) over the past several years. Since gluten-free I have not had DH for the first time in years. It is likely I have had Celiacs for a considerable time with moderate symptoms.

My wife cooks during the week and I cook on the week ends. We have simplified this considerable, but not to the point of just produce and meat or no processed foods. However, this may be what is necessary as suggested.

 

In the past 6 months there have been 3 occasions where  I have had wine with a dinner I or my wife prepared. My body reacted as if had consumed  large quantity's of gluten.  I had two glasses of wine which had absolutely no intoxicating effect. However, in each instance the symptoms lasted a week.

[GFinDC]

Hi Tbolt,

 

Six months is pretty early to be symptom free.  But that doesn't mean it isn't worth trying for!   A simple diet is very helpful at first.  No processed foods or only safe processed foods.  A few things I consider safe are Mission brand corn tortillas, Corn Thins,  Food Should Taste Good Chips (gluten-free).  Frozen foods are safer than canned foods often, and healthier too.  Look for foods with 3 or less ingredients on the label.  Organic and non-GMO foods are better if you can find them.

 

Adding some vitamin pills may help.   I think it is better to add individual vitamins rather than the kitchen sink type multi-vitamins.  B-vitamins are important for us.

 

I don't drink wine myself because I react to grapes.  Some people react to the sulfites in wines.  Red wines are generally more of problem for sulfites than white wines.

 

I've been experimenting with taking creatine lately myself.  So far it seems to help my energy level and my thinker thing.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[notme]

Hello notme, It is good to hear you are moving in the right direction . You have given me pause for thought regarding the length of time I may have been unknowingly doing damage. A good number of years ago I received a diagnosis of  "Irritable bowel syndrome ". Also, I have seen a Dermatologist for what I now believe to have been Dermatitis Herpetiformis(the diag. was unexplained blistering rash) over the past several years. Since gluten-free I have not had DH for the first time in years. It is likely I have had Celiacs for a considerable time with moderate symptoms.

My wife cooks during the week and I cook on the week ends. We have simplified this considerable, but not to the point of just produce and meat or no processed foods. However, this may be what is necessary as suggested.

 

In the past 6 months there have been 3 occasions where  I have had wine with a dinner I or my wife prepared. My body reacted as if had consumed  large quantity's of gluten.  I had two glasses of wine which had absolutely no intoxicating effect. However, in each instance the symptoms lasted a week.

yes - 'ibs' - here's a pill, eat more fiber (whole wheat!), you have a rash, here's some cream....  not to mention every other thing that was wrong and probably attributed to this sneaky disease!

 

i was already simplifying my diet trying to figure out what was killing me, but *bread* was never a suspect - innocent looking i guess lolz - so, making the shift to more unprocessed foods (just no gluten) was not too hard.  i still eat packaged bread and pasta, but almost everything else is from scratch.  

 

i find that alcohol is a whole different animal now that i am healing.  i find myself cutting it out more and more (and i likes my beer!) but it seems to be more of a nuisance than a treat lately.  i may change my mind later  

[Tbolt47]

Hi Tbolt,

 

Six months is pretty early to be symptom free.  But that doesn't mean it isn't worth trying for!   A simple diet is very helpful at first.  No processed foods or only safe processed foods.  A few things I consider safe are Mission brand corn tortillas, Corn Thins,  Food Should Taste Good Chips (gluten-free).  Frozen foods are safer than canned foods often, and healthier too.  Look for foods with 3 or less ingredients on the label.  Organic and non-GMO foods are better if you can find them.

 

Adding some vitamin pills may help.   I think it is better to add individual vitamins rather than the kitchen sink type multi-vitamins.  B-vitamins are important for us.

 

I don't drink wine myself because I react to grapes.  Some people react to the sulfites in wines.  Red wines are generally more of problem for sulfites than white wines.

 

I've been experimenting with taking creatine lately myself.  So far it seems to help my energy level and my thinker thing.

 

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Hello DC,

 

Thanks for the pointers. I take a Multi-Vitamin and a Probiotic, have seen others mention a digestive enzyme ?  I am eating more fruit than prior to my diagnosis but that is mostly mind over matter, not really enjoying it.  I like the Mission brand corn tortilla better than any of the gluten-free bread I have had.

I have noticed,even the certified gluten-free oatmeal gives me trouble. For the most part my diet consists of meat, rice, beans and eggs and various vegetable's.

I use cheese to add variety . I do eat gluten-free chips , pretzels and nuts for snacks.

I have given up on wine, red or white neither one works for me.

[ruthie-ray]

I had a positive blood test for Celiac's  in the late fall of 2012 . Biopsy confirmed Celiac late December. The symptoms that brought me to my GP were as follows: intense pain on my right abdominal  side  , joints ached, moderate headache on left side ,chronic  loose stool, bloating and distenuated stomach, extreme fatigue, insomnia and I truly had  a very difficult time articulating my thoughts or finishing a sentence. One of the most profound changes was my mental health. Normally very sure of my decisions, I could not make one, and procrastinated. I become frustrated with nearly every normal daily activity. Every email needed to be read several times to comprehend, focusing during a conversation was impossible, I did not have the mental energy to execute simple directions to prepare a meal.

 

I started the Gluten Free diet prior to Xmas 2012. My success with this followed a slow learning curve. Eventually, my headache, joint pain , abdominal pain and insomnia were the first symptoms to gradually dissipate. I know I have inadvertently eaten gluten, the above symptoms return, although not with the same intensity.

 

I am 6.5 months into gluten-free however my mental acuity has not returned, and an unexplained underlying anxiety has replaced my normal personality. For the past 6 months,  I have exposed myself to 98-99 % less gluten than prior to my diagnosis. However, I am constantly exhausted, exercise( I run 20-25 miles a week for the past 35 years) use to elevate my mood and sharpen my focus, now it just fatigues me.

 

 

I  learned early on, I cannot eat at a restaurant, no matter the claim of being " Gluten Free ". Nor anyone else's cooking even though they make the same claim. Is it too early in the " healing process " too expect to feel better? I am moving in the right direction regarding the relief of my physical symptoms, however   mentally  I feel very dull and anxious .

 

My 6 mo. blood work number below:

IGA=17

IGG=8

TTG/IGA=48

TTG/IGG=7

Hi.  I suggest that instead of going 98-99 % gluten free that you go 100% gluten free.  I am only 3 + months into this, but have noticed many symptoms go away and the "Mental Fog" go away.  One thing to consider...do you also drink/eat aspartame products.  Prior to my celiac diagosis, I went off of diet soda and that signficantly improved my mental clarity.  I would suggest that if you consume aspartame products.  It actually made a huge difference in my professional life, as while on diet soda, I was only working with 1/2 a brain.  If you are not on aspartame, then try 100% gluten-free, and perhaps go on a raw diet for a few weeks and see if it helps you get out of the funk.  Water, Water Water.  Good luck.

[kareng]

Hi.  I suggest that instead of going 98-99 % gluten free that you go 100% gluten free.  I am only 3 + months into this, but have noticed many symptoms go away and the "Mental Fog" go away.  One thing to consider...do you also drink/eat aspartame products.  Prior to my celiac diagosis, I went off of diet soda and that signficantly improved my mental clarity.  I would suggest that if you consume aspartame products.  It actually made a huge difference in my professional life, as while on diet soda, I was only working with 1/2 a brain.  If you are not on aspartame, then try 100% gluten-free, and perhaps go on a raw diet for a few weeks and see if it helps you get out of the funk.  Water, Water Water.  Good luck.

Just to clarify to someone who might read this:

Aspartame is gluten free.

[Tbolt47]

Hi.  I suggest that instead of going 98-99 % gluten free that you go 100% gluten free.  I am only 3 + months into this, but have noticed many symptoms go away and the "Mental Fog" go away.  One thing to consider...do you also drink/eat aspartame products.  Prior to my celiac diagosis, I went off of diet soda and that signficantly improved my mental clarity.  I would suggest that if you consume aspartame products.  It actually made a huge difference in my professional life, as while on diet soda, I was only working with 1/2 a brain.  If you are not on aspartame, then try 100% gluten-free, and perhaps go on a raw diet for a few weeks and see if it helps you get out of the funk.  Water, Water Water.  Good luck.

Hello Ruth,

I believe you  misread my post. Like most folks, on occasion I have inadvertently eaten  "gluten", therefore not 100% gluten free.  I do not drink soft drinks diet or otherwise.

[GFinDC]

 

 

Hi Tbolt,

 

You are welcome for the pointers.  We all like to help each other out on the forum with getting started on the gluten-free diet.  It's something we all had to learn.

Digestive enzymes may help.  They are made by the pancreas and stomach.  But with celiac the digestive system is kind of thrown out of whack and some things may not work normally.  So a little digestive help can be beneficial.

 

Some people find Betaine HCL helpful.  It creates stomach acid.  There are many kinds of digestive enzymes on the market.  If you have a health food store near you it might help to ask them for recommendations.  Just be sure any pills you get are gluten-free.

 

Planters is a good company for nuts.  They will label any gluten.

 

I can't eat oats either, even the gluten-free certified ones.  They give me reactions just like gluten does.  Do you react to grapes or raisins?  Just curious, cause that would be a good thing to know.  Grape juice is used as a sweetner in some gluten-free products.

 

Veggies are great, but be sure to wash them before cooking.    Just a quick rinse can be helpful.  I rinse veggies before using them, even mushrooms.

 

Open Original Shared Link

[Tbolt47]

Hi Tbolt,

 

You are welcome for the pointers.  We all like to help each other out on the forum with getting started on the gluten-free diet.  It's something we all had to learn.

Digestive enzymes may help.  They are made by the pancreas and stomach.  But with celiac the digestive system is kind of thrown out of whack and some things may not work normally.  So a little digestive help can be beneficial.

 

Some people find Betaine HCL helpful.  It creates stomach acid.  There are many kinds of digestive enzymes on the market.  If you have a health food store near you it might help to ask them for recommendations.  Just be sure any pills you get are gluten-free.

 

Planters is a good company for nuts.  They will label any gluten.

 

I can't eat oats either, even the gluten-free certified ones.  They give me reactions just like gluten does.  Do you react to grapes or raisins?  Just curious, cause that would be a good thing to know.  Grape juice is used as a sweetner in some gluten-free products.

 

Veggies are great, but be sure to wash them before cooking.    Just a quick rinse can be helpful.  I rinse veggies before using them, even mushrooms.

 

Open Original Shared Link

Good Evening DC,

No problem with raisins, I cannot recall the last time I had a grape. I do eat the gluten-free trail mix sweetened with grape juice without a problem.

[Tbolt47]

yes - 'ibs' - here's a pill, eat more fiber (whole wheat!), you have a rash, here's some cream....  not to mention every other thing that was wrong and probably attributed to this sneaky disease!

 

i was already simplifying my diet trying to figure out what was killing me, but *bread* was never a suspect - innocent looking i guess lolz - so, making the shift to more unprocessed foods (just no gluten) was not too hard.  i still eat packaged bread and pasta, but almost everything else is from scratch.  

 

i find that alcohol is a whole different animal now that i am healing.  i find myself cutting it out more and more (and i likes my beer!) but it seems to be more of a nuisance than a treat lately.  i may change my mind later  

Hello notme,

There is something very sinister when something as wholesome as bread becomes poisonous. Certainly brings new meaning to " one man's meat is another man's poison. "

I am from the Chicagoland area where deep dish pizza is almost a religion. Nothing better to have an ice cold beer with....I understand your loss.

[pricklypear1971]

Many of us go into an exhaustion phase after going gluten-free. The whole dx of celiac is pretty shocking, the adjustment can be stressful (despite the rewards)...

Have you had vitamin/ mineral levels checked: iron, d, b's?

Have you been screened for other AI diseases like Hashimoto's thyroiditis?

For some reason, going gluten-free seems to resemble ripping the scab off a cut only to find its infected. Removing the scab was good - revealed the problem, but now the cut needs to be cleaned and treated to heal... Turns out to be an ugly process, pretty painful, and you discover there's more to it than just a cut with a scab.

My point is that since Celiac is an autoimmune disease, it's part of a bigger picture. It isn't just food, it isn't just isolated damage in your intestines. Your body has been under an attack EVERYWHERE.

Exhaustion is normal. You may have another condition to deal with. You may need vitamins. You may have an additional intoletance. You may be getting cc'd. You may just need time to heal.

I'd try slowing down in the jogging and see what happens. It may be too much right now. I'd ask for vitamin/mineral tests as well as thyroid testing. I'd double check all of my food, utensils, body care, meds for gluten, I'd keep a food diary. I'd read about other AI conditions and see if any ring a bell...you never know.

[w8in4dave]

Wow I am just a few weeks in and I think your doing wonderful!! I hope to feel like I could run in 6 months!!  Even if I am exhausted afterward just the gumption to get up and do it would be good enuf for me!! 

I do think there are hidden Gluten in alot of things!! I am not sure how to go 100% gluten free!! I thought I was 100% gluten free but then live and learn!! But like I said I am only a few weeks into it!

[Tbolt47]

Wow I am just a few weeks in and I think your doing wonderful!! I hope to feel like I could run in 6 months!!  Even if I am exhausted afterward just the gumption to get up and do it would be good enuf for me!! 

I do think there are hidden Gluten in alot of things!! I am not sure how to go 100% gluten free!! I thought I was 100% gluten free but then live and learn!! But like I said I am only a few weeks into it!

Hello w8in4dave,

I would encourage activity/exercise, going for walks if at all possible. Prior to my diagnosis, and when beginning the gluten free diet. I was exhausted ( still unusually tired) but I had a difficult time falling asleep, and only slept for a few hours. I never felt refreshed . As I  forced myself to get back to my exercise routine. I began to fall asleep quicker and stay asleep longer. Still not good in this aspect but better.

[w8in4dave]

Hello w8in4dave,

I would encourage activity/exercise, going for walks if at all possible. Prior to my diagnosis, and when beginning the gluten free diet. I was exhausted ( still unusually tired) but I had a difficult time falling asleep, and only slept for a few hours. I never felt refreshed . As I  forced myself to get back to my exercise routine. I began to fall asleep quicker and stay asleep longer. Still not good in this aspect but better.

Tbolt47

I do exercise , I walk, I cannot run, But I try to walk every day!! 1 to 2 miles a day depending , and I am exhausted when I do it!! before I do it! Even if I could run I just wouldn't have the gumption!! 

[Tbolt47]

Tbolt47

I do exercise , I walk, I cannot run, But I try to walk every day!! 1 to 2 miles a day depending , and I am exhausted when I do it!! before I do it! Even if I could run I just wouldn't have the gumption!! 

w8in4dave,

I certainly know the feeling, I actually felt worse, for a time , when I initially stopped eating gluten. I have been running for so many years it almost like a " compulsion " to continue.  It is great that you walk.

[w8in4dave]

Ty I think it is great that you run!! I had surgery on my leg, it is crooked now! They told me I was lucky to walk let alone run!! Said I'd have a limp all my life! Well no limp , I go up and down stairs, They said I'd prob never be able to do that! Altho I cannot run I do walk , just to prove them wrong!!  

 

My oldest Daughter is a runner!! She loves it!! She just had a baby he just turned 3 months old!! She ran almost to the time of delivery , but not quite! Lol ....   she just started running again about a month ago!! It was hard for her to start again! But she has it again!! She is so happy now!! You remind me of her when you talk about running!! Great attitude keep it up!!