The daily roller coaster ride

[AAtroposP71]

Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place.

I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now)

Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride.

I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried.

As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.

[CatchyUserName]

I feel the same way! Newly diagnosed (gluten-free since July 1) and never had major GI symptoms mostly neurological issues and other very random stuff. So no red flags to tell me, "You just glutened yourself!" Or at least I haven't identified them yet. I'm not sure if I'm feeling better or not yet. I do have more energy but lots of anxiety and random symptoms that might be celiac related... but who knows. I'm just not sure if this is what "feeling better" is yet. I can't imagine what that is like... or will be like. And I keep reading about people "getting sick" when they are glutened but that is so vague. For me, I'm not sure I'll know if I've actually been glutened or not. I feel like I'm extremely careful but I'm not sure if I'm being over the top, or if I'm doing it right, or not enough and need to do more. I'd just like to get to a nice gluten-free baseline and note what that is like so that I can compare how I used to feel and how I might feel if glutened so that I'll know! Sorry, didn't mean to hijack your thread and provide no answers. I can just relate, that's all.

[Trailblazer]

Hey, I am learning also...make sure you are taking a good multi-vitamin...gluten-free of course.  I have had a few "charlie horse" pains in my thighs and am taking an extra B12 tablet...If you have an ALDI grocery store nearby they have lots of gluten-free items snacks and frozen.  Vitamins will help...you are not getting enough nutrients with what you are eating.

[ravenwoodglass]

What you all are going through is normal. It took a long time for celiac to progress to the point where you were diagnosed and it takes time for the antibodies to resolve and for you to return to full health but you will. Eat as many whole foods as you can, stay away from oats and limit or delete dairy until you have healed for a while longer. Some of us will react to even gluten free oats so wait until you have been symptomless to try them out.  Sublingual B12 may help you heal a bit faster and do take a good gluten free vitamin. Be careful of the 'whole foods' vitamins as some will have barley or wheat grass in them. Eventually you will recognize when you get hit by CC, in my case I get a shift like I am falling sideways and an almost instant change in mood for the worse but it took a while to realize that was what was happening.  If you take any prescription meds do make sure that your pharmacist knows you are celiac and that they are checking all meds prescribed. If you haven't already do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good information to keep you safe.

Welcome to you all and I hope you heal quickly.

[Ennis-TX]

9 hours ago, AAtroposP71 said:

Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place.

I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now)

Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride.

I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried.

As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.

A good amount of the neurological effects from celiac are also related to nutrient deficiencies caused by malabsorbtion from damaged intestines and the fact that most gluten-free foods are not fortified and your net eating many grains. You sound good about the CC and everything and seem to be taking percations goods, I still use freezer paper for a clean safe work surface even in my gluten free home lol.

Anyway top things to look for and consider are magnesium and B vitamin deficiencies . I take my in a drink to avoid pills and the sublingual forms are more easily absorbed by the body. I normally suggest 2 brand or forms of magnesium and you need to find the one that works for you there. They are Natural Vitality Calm, a magnesium citrate in a powder, you add it to a warm drink let it fizz and drink it. Magnesium citrate can be a bit harsh on some peoples guts, I suggest you start off with 1/4 tsp and work your way up to the full dose over a week, if you get D then your taking too much and need to back down or the citrate version might be too rough for you. In which case I suggest Doctors Best, bit more off tasting and mixes best with a juice but with the powdered form of it you do not have to worry about digestion issues, I just found the citrate to seem to help with my nerve issues more.

B Vitamins, I take Liquid Health Stress & Energy and the Neurological Support, I take 1 tbsp of each 2-3 times a day before meals. Really helps with everything and being in liquid forms I just add to tea and drink it.

There are many other vitamins to look into and we each have ones we have issues with more then others, getting tested might help, NOTE magnesium and B vitamins sometimes show normal but you will still find you need supplementation...bit of a odd thing I found.

Yeah the neurological effects are  huge thing with me as my issues with this disease cause my immune system to attack my nervous system and brain....accumulated brain and nerve damage over the years. Had a whole mental trauma issues with them, my gastro issues back then were mostly just constipation. NOW days I get the Vomiting, D, gas, bloat, and then constipation for a week along with neurological issues which NOW if I get exposed to eating straight gluten (happened twice in 3 years to this extent) I loose motor control and collapse unable to move, normally while vomiting violently to the point of blood coming up (this was what happened last June 2016 after eating out).

 

[AAtroposP71]

Thank you all for replying. It's good to know that it's not just me. It gives me (and hopefully the other noobs) some comfort to know that it's normal for the ups and downs to happen. I keep trying to tell myself to be patient with it but it's so hard to be able to look down the road further than the moment when you're in the middle of it.

I forgot to mention, yeah, I have had a full vitamin, mineral, and general blood panel done and everything came back normal. Regardless I still supplement with a good (and expensive) multivitamin plus sublingual D3 and B12 every day, and naturally I scrutinize the labels on those and everything else for anything even non-gluten that sounds fishy, including the possibility of CC at the factory.

I guess it will just take longer to stabilize.

[Ennis-TX]

35 minutes ago, AAtroposP71 said:

Thank you all for replying. It's good to know that it's not just me. It gives me (and hopefully the other noobs) some comfort to know that it's normal for the ups and downs to happen. I keep trying to tell myself to be patient with it but it's so hard to be able to look down the road further than the moment when you're in the middle of it.

I forgot to mention, yeah, I have had a full vitamin, mineral, and general blood panel done and everything came back normal. Regardless I still supplement with a good (and expensive) multivitamin plus sublingual D3 and B12 every day, and naturally I scrutinize the labels on those and everything else for anything even non-gluten that sounds fishy, including the possibility of CC at the factory.

I guess it will just take longer to stabilize.

D3 should be taken every 3-7days not daily. It stays in your body for awhile and is easy to OD with causing nausea and vomiting.

[AAtroposP71]

1 hour ago, Ennis_TX said:

D3 should be taken every 3-7days not daily. It stays in your body for awhile and is easy to OD with causing nausea and vomiting.

A quick google search tells me I'd have to be taking 40,000 - 50,000 IU a day for at least a couple months for that to happen. Between my multivitamin and sublingual D3 I'm getting about 5,500 IU a day and I don't get it from anywhere else, like the sun, since I can barely go outside. I've only added the 5,000 from the sublingual a couple weeks ago. I'm not too worried about it.

It looks like us newbies just need more time to recover. Thanks again everyone. It's good to know that we're not alone. 

[Trailblazer]

Thank You TX...Bless You

[ch88]

I don't know for sure but if you have a emotional roller coaster it may be do to food sensitivities.  The pattern however may be difficult to figure out.  I also removed all grains and milk from my diet. I limit my fruit and fructose consumption (fructose binds with tryptophan in the gut) and don't eat processed food. That might be something you could try. Alcohol can be problematic as well as a diet too high in protein or fat.  Vegetables may be your best bet as far as a healthy nutritious diet. 

I take glutamine powder as unbound glutamine is the preferred food for the cells that line the intestine. It is known to help with "leaky gut syndrome."  I think it really helps!!! Glutamine powder is gluten free and it may help repair damage to the brain blood barrier as well. 

I also am experimenting with dark cocoa powder as it is rich in antioxidants and flavinoids which can help with healing and improving mood. 

Another option would be to research the AIP diet. 

[Ennis-TX]

10 minutes ago, ch88 said:

I don't know for sure but if you have a emotional roller coaster it may be do to food sensitivities.  The pattern however may be difficult to figure out.  I also removed all grains and milk from my diet. I limit my fruit and fructose consumption (fructose binds with tryptophan in the gut) and don't eat processed food. That might be something you could try. Alcohol can be problematic as well as a diet too high in protein or fat.  Vegetables may be your best bet as far as a healthy nutritious diet. 

I take glutamine powder as unbound glutamine is the preferred food for the cells that line the intestine. It is known to help with "leaky gut syndrome."  I think it really helps!!! Glutamine powder is gluten free and it may help repair damage to the brain blood barrier as well. 

I also am experimenting with dark cocoa powder as it is rich in antioxidants and flavinoids which can help with healing and improving mood. 

Another option would be to research the AIP diet. 

Yeah with the chocolate, I can attest that it really helps with ones mood, problem is most cocoa is processed and defatted, your best best are RAW cocoa from BigTree, Cocoa Nibs, or my personal favorite Crio Bru which is ground cocoa nibs that are meant as a coffee replacement >.> I eat them by the hand full with a bit of sweetener or over food/deserts as a sprinkle They have different roast, and origin beans so you can get varied flavors.  My life has been really hectic as of late, I manage it by consuming a ton of cocoa, and hemp, I honestly can not get depressed if I tried or sad. I just am OH WELL with everything. Open Original Shared Link

[ch88]

3 minutes ago, Ennis_TX said:

Yeah with the chocolate, I can attest that it really helps with ones mood, problem is most cocoa is processed and defatted, your best best are RAW cocoa from BigTree, Cocoa Nibs, or my personal favorite Crio Bru which is ground cocoa nibs that are meant as a coffee replacement >.> I eat them by the hand full with a bit of sweetener or over food/deserts as a sprinkle They have different roast, and origin beans so you can get varied flavors.  My life has been really hectic as of late, I manage it by consuming a ton of cocoa, and hemp, I honestly can not get depressed if I tried or sad. I just am OH WELL with everything. Open Original Shared Link

I have been eating dark chocolate bars as well as cocoa powder. Both are highly processed (this is an exception to the no processed food rule) which I am sure removes a lot of the nutrients.  I might try the nibs as I am sure they are more nutritious and they look really good.  I am suspicious of using hemp, for myself,  but it is interesting that chocolate and chilly peppers have some of the same chemicals! 

I actually tried chocolate as it has flavinoids which act as a "xanthine oxidase inhibitors".  I have gouty arthritis which is caused by a build up of uric acid in the blood. Coffee and an chocolate are thought to help with that. I might react negatively to coffee  though so I am trying chocolate. 

[cyclinglady]

On 7/21/2017 at 7:34 PM, AAtroposP71 said:

Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place.

I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now)

Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride.

I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried.

As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.

You are normal!  All the things you are going through are normal for someone with celiac disease....probably with any life changing illness.  What you need is patience.  Most here take a year to heal or longer due to setbacks on the diet or healing from systemic damage.  The nervous system seems to take the longest.  Ask your doctor to check you for any deficiencies.  No sense guessing what you might need.  It is a common and recommended practice to check for vitamin and mineral deficiencies.  

Open Original Shared Link

Once healed, you might not need any supplements, if you eat a wide and varied healthy diet.  

[GFinDC]

3 hours ago, ch88 said:

I have been eating dark chocolate bars as well as cocoa powder. Both are highly processed (this is an exception to the no processed food rule) which I am sure removes a lot of the nutrients.  I might try the nibs as I am sure they are more nutritious and they look really good.  I am suspicious of using hemp, for myself,  but it is interesting that chocolate and chilly peppers have some of the same chemicals! 

I actually tried chocolate as it has flavinoids which act as a "xanthine oxidase inhibitors".  I have gouty arthritis which is caused by a build up of uric acid in the blood. Coffee and an chocolate are thought to help with that. I might react negatively to coffee  though so I am trying chocolate. 

Hi ch88,

You could try going nightshade free to see if it helps your arthritis.  It might help.  The common food nightshades are potatoes, tomatoes, peppers, eggplant, turmeric and paprika.  If you try nightshade free for one month that should be enough time to know if it helps IMHO. Sweet potatoes/yams are ok, as they are not nightshades.

[ch88]

I have tried removing nightshades and I don't think they effect me much. With some experimenting I have figured out how to successfully lower my uric acid blood levels and control my gout. Gout is one form of arthritis that is caused by diet in most cases and can be controlled by limiting alcohol, high purine foods and fructose.  

[Trailblazer]

On 7/22/2017 at 1:44 PM, AAtroposP71 said:

A quick google search tells me I'd have to be taking 40,000 - 50,000 IU a day for at least a couple months for that to happen. Between my multivitamin and sublingual D3 I'm getting about 5,500 IU a day and I don't get it from anywhere else, like the sun, since I can barely go outside. I've only added the 5,000 from the sublingual a couple weeks ago. I'm not too worried about it.

It looks like us newbies just need more time to recover. Thanks again everyone. It's good to know that we're not alone. 

Be sure to read "cyclinglady" post and link to an article from the University of Chicago Celiac Center....vitamin deficiency's prior to diagnoses....so helpful. 

[Celiac4762]

I feel this post so much it's crazy. 

 

I can can totally understand the emotional roller coaster. Constantly switching back and forth from being totally motivated and driven to do something, then later that day you're just out of it and depressed with no desire to do anything. 

 

I dont know know too much on the diet specificities that everyone has posted above. I've removed dairy and oats completely, but I don't think much has changed physchologically. And I'm sure there's tons of ways to help improve your state of mind with natural foods and vitamins. But some people (like us) are simply just cursed with a hyperactive mind. 

 

I try and do my best to understand that everything I feel is just my emotions. I realize that they are just my mind interpreting what's around me and aren't exactly real, but I also don't just blow them off like they're worthless. We feel them for a reason. So I try and ride them out. I'll go to the gym when I'm super angry and take advantage of that energy. When I'm sad I play guitar, when I'm stressed out and frustrated beyond belief I blast music in my room and dance/sing it out. Kinda weird, kinda different, but I'm learning to control this hell of a ride my mind puts me through every day. It's hard, but I'm making progress. You can too. Take time to learn yourself. What makes you happy? What makes you sad? How can you take advantage of these emotions to benefit yourself. 

 

Try new things, and never, ever, beat yourself up about the way you feel. You feel that way for a reason. Enjoy your emotions, they can be fun. And most importantly, you're only human, it's okay to be a little crazy.