How To Not Get In The Way Of Your Own Recovery? So Confused...

[Pyro]

Hey all, thanks for this site. It's really a great help to have people around who don't down on you, call you crazy/neurotic, "it's all in your head", and all that when you're having some gastro crisis.

I've already been familiar with and have been gluten/dairy free for two years seeing the most dramatic improvements unwittingly following something like the Specific Carbohydrate Diet. This was probably the first time in my life that I felt consistently "normal". Rather than being withdrawn and twiggy, I was finally vital, strong, and all food I was eating seemed to be contributing more and more to my health rather than just rotting away and making me sluggish.

Then this winter I had to change my diet more and more because the abundance of fresh local produce pretty much disappeared forcing me to find new things. Unfortunately I decided to pick up grains to fill these gaps, thinking that maybe by now I could handle them and that they would greatly help me gain weight/strength in the gym.

At first they seemed to be working okay and were contributing to my energy but after a few days they only seemed to dry out my hair, bloat, and constipate me. I just attributed this to not getting enough oils, or maybe needing more veggies, or just rest from the gym. This went on for about 6 weeks until I decided that I should have just listened to myself from the get go and acknowledged that grains and starch have ALWAYS made me feel shabby in the past.

A few days ago I've cut out all grains, potatoes, yams, and basically all the illegals on the SCD. But now I'm VERY low on energy, low in brain power, nothing seems to be getting digested or absorbed, stool is unsatisfactory, face keeps getting pale, etc.. All this when I keep blowing cash on good fresh food and stuff like coconut water..

It's all stressing me out and that's adding to life stress (finding a job, leaving socially isolated rural town, losing health coverage) which I've been trying to play down but could be manifesting as all these problems. This creates such a vicious cycle because it's not like someone is going to welcome you into their business with open arms when you show up all bloated, disheveled, and with dark circles under your eyes to the interview you know? lol. I've been trying to keep my head up during these times as much as I can but wonder if my body is buckling under the pressure.

From reading other topics here in "coping with" I can recognize a whole bunch of what I'm going through and it's probably just recovery but it's still too much. I'm 22 and at the prime of my life but spend it sick, weak, and at home worrying about whether not I should be eating beets & cabbage now (what I was originally going to ask in this topic, as in if I should stick to simpler veggies and fish until my energy starts coming back again) or if those would hurt my stomach too much. While I know that I'm not alone in whatever I have, I still can't help but feel like EVERYONE else my age is out having a blast without giving a damn about whether they need more potassium or not. And here I am playing doctor with myself for the last two weeks and failing miserably.

[RiceGuy]

It does sound like you need to avoid more than just gluten. The typical advice is to listen to what your body is telling you. If it makes you feel worse, then don't eat it.

Which grains have you tried?

However, it also sounds like you could probably benefit from some nutritional supplements. A co-enzyme B complex and separate methyl sublingual type vitamin B12 tablet are the first which come to mind. These will help with energy, and some of the other issues you mentioned. The dark circles could be a sign of an iron or zinc deficiency. That would also be very common. However, iron is one of those nutrients which is easier to overdose, so you might consider having a blood test for deficiencies. There are many forms of iron supplements, so it might take some experimentation to find one that works for you.

Another common deficiency is magnesium. This often leads to a sluggish bowel, low energy, circulation problems, and many other issues. Fortunately, the supplements are safe, effective, and inexpensive. There are different forms, and you might want to try a few to compare effectiveness.

If you haven't already, try avoiding nightshades for awhile. Many seem to feel markedly better without them.

If you find yourself lacking in dense energy foods, perhaps legumes would help? Beans are very good sources of many nutrients. Typically much better than grains. Nuts and seeds are also great if you can incorporate them into your diet. There are recipes for energy/snack bars which you might like to try as well.

[Pyro]

I take these* for a multi-vitamin supplement along with 5000 Vitamin D-3 and Fish Oil. All grains make me feel bad (Millet to Quinoa to Rice), legumes I'm not so sure, and for now I'm cutting down on the nuts and seeds to focus on meat and nutrient rich veggies because my absorption seems to be getting worse and worse.

The multi which MAY be upsetting my stomach but doesn't really seem to:

Beverly International Ultra 40 Desicated Liver (can't link)

These have everything pretty much everything in natural form

[sandsurfgirl]

I don't have any advice right now. I need to think about it and reread your post. Just wanted to send you some hugs and let you know that you will get the support you need here.

I know it's so frustrating being 22 and suffering like this, but when I was 22 I had no answers. It took me until a month ago, just after I turned 40 to get a diagnosis of celiac disease after lots of suffering for my whole life.

So hang in there. It will get better.

[mushroom]

Well, one good thing about this place, no matter what you are going through,the chances are 99% you will find someone else going through it too. I am over two years down the gluten free path too, and have had a relapse of digestive symptoms, particularly bloating. It all started when I thought I would add some beets into my diet because I thought they must be good for me, NOT!! Since then I am back on digestive enzymes, taking a Motilium at bedtime (to speed gastric transit so that things don't ferment in my gut) at bedtime, and still am awoken in extremis of bloating and racing, pounding heart every night about four hours after bedtime. Normal stool though. I have even eliminated as many lectins as I can (they are in everything so you have to concentrate on the major sources--interestingly gluten grains are one of the largest sources but also soy, legumes, nightshades). I had already got rid of soy and nightshades so it was just the legumes that had to go. Most all of those I had been eating was green beans and peas. I am a little better, but not better enough for my liking.

It is dispiriting when one thinks one has the problem licked, and then everything goes kablooie!!!

Yes, stress can be a major factor in how we function, both physically and mentally, and it sounds like you have made big changes in your life which could be playing a role in this. I know it is useless to say, "Don't stress", but if you could find a means of stress reduction, like yoga, meditation, even just deep, slow belly breathing, it might help. Stewing on things only makes them worse so a positive attitude is key.

Do you eat the naturally fermented sauerkraut that I understand is part of the SCD. (Disclaimer: I am not a follower of the SCD) Also, the homemade yogurt might be good for you if you do dairy at all. This is one of the standbys of the SCD also. It is worrisome that you are feeling weak. Perhaps you should cut back on your strength training for a while because it will be taking too much of your energy.

I agree with Riceguy that the right supplements can make an extraordinary difference to your energy and sense of well being and I would encourage you to explore this further. With no current health insurance you would not want to do any testing at this point, but a sublingual B12 and a good B complex high in folate (or additional folate on the side) along with your D3 and the magnesium would surely not be out of order, and perhaps a multimineral supplement to give you all the trace elements that you may have been missing from your food for so long. Yeah, playing doctor on oneself is a pain, but hey, someone's got to be your doctor And who knows your body and problems better than you? Keep talking here and maybe some answers will come your way that work for you. I sure hope so.

[Pyro]

I can't do the yogurt but do take NOW acidophilus. As for yoga, meditation, and in general functional approaches to life I do that but still feel not so great. Even this week I haven't been feeling the energy to do my whole routine and didn't do anything today.

BTW I notice you mentioned some veggies. SCD maintains that you need to wait and try adding the course ones later but I have no idea what the hell to eat!! My diet is mainly meat, nuts, seeds, fruit, and vegetables like spinach, turnip greens, asparagus, sweet peppers, beets, onions, cabbage, romaine lettuce, brocolli, cauliflower, carrots, and sometimes hot peppers.

If I cut out all the things they recommend (at first) it would be just meat, romaine, bananas, and carrots!! I'm not even sure how that could be balanced even with the liver concentrate I take. Of course that doesn't last forever but I'm afraid if that doesn't help it could just lead me to being even more deficient.

[sandsurfgirl]

There is no plan that is going to be the perfect thing for you because plans aren't made for your specific body. Eating plans sell books.

You are going to have to go by trial and error and see what is tolerable for you. Sometimes our guts go haywire and just don't want us to eat anything. That might not mean you are intolerant of all those foods. It could just be that your GI tract is upset.

Is there any possible place you could be glutened? Hair products? Soaps?

[Pyro]

My home actually. But no one will want to go out of their way to help out and still even make toast when I'm there to breathe it in. It really can't be that bad, though, because I still make sure not to let food touch a dirty counter an so on. And using/not using shared utensils hasn't made a difference in the past as long as they are cleaned.

[sandsurfgirl]

It's easy to get in a panic and start cutting all sorts of foods or trying all sorts of supplements which can just cause more distress and confusion. Supplements have to be treated like drugs. They can have side effects and they can cause the very problems you are trying to solve, so go slowly if you add anything.

The best thing I did was start keeping a journal of foods, supplements and symptoms. I had foods and supplements on one side and symptoms on the other with times. A doctor told me to do this. It really made some things stand out for me that I wouldn't have noticed otherwise.

I have stopped doing the journal because I'm seeing improvements but when I start challenging foods, etc. I will keep it again. Sometimes the symptoms come on 2 hours later or the next day so you might think it's one thing but it's really another.

As hard as it is, I would urge you to continue your social life as much as you can. You are right that you are too young to be sitting around worrying about cabbage and beets or whatever it was that you said. You would be surprised at how many people are suffering from health issues too and would understand. I have made some friends recently that you would never know have any issues, but one lives in constant pain (trying to get her to get tested for celiac) and one has panic attacks. They are gorgeous, vibrant women and you would never know.

When I was your age I was SO sick all the time with GI stress but I never told anyone because there was no diagnosis and no doctors had answers for me. I just figured I had to live with it. I was training in dance and dancing hours and hours everyday in pain. You have to force yourself to get out and do fun things unless you are just too too sick and must stay in. Don't let celiac take over your life.

[RiceGuy]

I must say, I have my doubts about the desicated liver supplement. I looked it up, and IMHO, it isn't a multivitamin of the ordinary sort, and does not contain everything your body needs. Even the supplements that do have all the main vitamins and minerals are lacking in the amounts. You see, it simply is not possible to put enough of everything into a pill or two. Not to mention all the other nutrients beyond the usual vitamins A thru E, and K, and the major minerals. There's just far more to nutrition than that.

I personally think you'd be much better off with a regular multivitamin/mineral formula, and it'd also cost much less than what you're probably paying.

If you're not already taking a digestive enzyme, that'd be another thing which should help. Then you'd be more able to absorb the nutrients you take in. Just having something go into the gut doesn't mean you'll derive all the benefits it has to offer. A damaged intestine can't produce all the enzymes it needs to break foods down.

[afreeclimber74]

I always had pale skin and circles under my eyes too. Was diagnosed with anemia at the same time as celiac. Iron supplements have been helping me, despite some upset stomach.

It's hard to feel normal when you have to worry about what you're eating all the time, so make sure you spend some time and effort making your head right too.

[Pyro]

Are you sure about the d. liver? I wrote the company themselves because I suspect that maybe they (the iron most likely) are causing me constipation but I don't know. Liver has a lot of vitamins and I'll post a link detailing it soon, but I figured since my diet is already vitamin rich that it didn't matter if the supplement wasn't complete in a way.

Open Original Shared Link

What I take is basically that, defatted and dried (dessicated) into pill sized tablets which I actually chew (yes, they do not taste very good!!) to make sure it gets absorbed. Maybe I can switch over to the beverly ultra 4 multi instead but I think when my intestines get moving normally things will start working out.

As for digestive enzymes, I'm scared of them now. I have some pretty good quality (NOW) super enzymes but they don't seem to do anything and only once did I burp up a beef after taste after taking it. I'm not sure but I almost think that they could have been entering my small intestine all along causing more damage than they help. And I was taking something like 1-2 pills each meal for months.

Thanks for all of your support btw.

[JustLovely9216]

Not really any advice but wanted you to know your not alone.

I'm 24 and I told my doctor exactly what you said...I shouldn't be this tired, this worn down...this is the prime of my life and I can't even play a role in it.

Since going gluten free I've felt much better, much more free to be involved in my own life. I am somewhat concerned about dairy but haven't gotten the nerve to eliminate it yet. I think the earlier idea of a food journal is cricual - it can bring some things to light you may never have noticed.

You're in the right place though - everyone here will do all we can to support and give you advice.

[Pyro]

I'm feeling a lot better now. Still not strong enough to lift weights again but I'm confident that energy is on its way to start building up now.

There really isn't a sure way of knowing what worked, especially when affected over a period of time, but there are a few things I think helped pass what seemed like a large back up in my intestines. Firstly it was probably your support helping me just kind of relax and be more patient with what was going on. Drinking coconut water also helped me feel better and combat the feelings of dehydration even though I already drink like 2 gallons of water per day. And then, I know most probably won't condone this, but chainsmoking a bunch of cigarettes over the last couple of days. Now I'm not a smoker and only very rarely keep ciggs (maybe one pack per yer?) but I figured that flooding my system with dopamine for awhile might help stimulate and knew it wouldn't be a problem to quit directly afterwards. This seemed promising because most smokers will tell you that they wake up, smoke a cig, drink some coffee and then drop a deuce every morning. At least this is what they tell me .

I hate to bring up drug use again but as long as we can be honest here, I always found that psychedelics will clean me out then set my intestines back to regular. A lot of other people report this (even if they don't have damage per se) and thousands of years of cultural use remark about their healing properties, purgative effects, and "cleansing" effects. There must be a pretty deep connection between neurotransmitters and our digestion, which is actually proven but not really understood.

[Jestgar]

I hate to bring up drug use again but as long as we can be honest here, I always found that psychedelics will clean me out then set my intestines back to regular. A lot of other people report this (even if they don't have damage per se) and thousands of years of cultural use remark about their healing properties, purgative effects, and "cleansing" effects. There must be a pretty deep connection between neurotransmitters and our digestion, which is actually proven but not really understood.

Really?? I would never have connected them.

[Pyro]

Sure! I'm not sure how much I'm allowed to share here but a good site to look this up is erowid dot org. Things like ayahuasca and peyote (favorite drug by far) are greatly connected with cleaning out the mind/body but people still have success with other things like mushrooms and LSD. LSD has even been successfully used to treat many cases of neurosis and even schizophrenia.

[sandsurfgirl]

Sure! I'm not sure how much I'm allowed to share here but a good site to look this up is erowid dot org. Things like ayahuasca and peyote (favorite drug by far) are greatly connected with cleaning out the mind/body but people still have success with other things like mushrooms and LSD. LSD has even been successfully used to treat many cases of neurosis and even schizophrenia.

Are you seriously advocating the use of psychedelic drugs to combat your celiac symptoms? There is enough evidence out there about the horrible damage they do to your body and your brain to warrant not using them. The use of plant drugs by native peoples has it controversies too, but when it's used according to their native customs it is under highly controlled conditions. I don't buy for one minute that those drugs will clear your mind and body, but it's a good argument for people who want to get high to make. There are myths that pot is good for asthma too, but it's not true.

The use of LSD on severely mentally ill patients is controversial at best and these are people who are NOT functioning in society at all so they are drugging them out so they don't hurt the staff at the mental hospital. There aren't high functioning successful schizophrenics out there running businesses and dropping medicinal acid.

There is NO healthy living when you do drugs. Lead a clean life. Eat clean and you will heal.

OMG I just realized your thread is titled "How to not get in the way of recovery." Hmmm well not doing drugs is a good start.

[Pyro]

You are wrong on many fronts, no offense. Go ahead and look on erowid. Most arguments about LSD and whatnot are not based in science or didn't consider that people weren't taking them in optimal conditions. There is even a great scientific journal written by Stanislav Grof available online for reading. But anyway I don't want to argue about that because people have strong opinions about drugs. What I do want to point out, though, is that every single time I've taken them they have solved a bout of discombobulated digestion if I was having it and definitely helped work through any life problems if I was having any.

There is positive drug use and there is negative drug use.

[detritus]

You are wrong on many fronts, no offense. Go ahead and look on erowid. Most arguments about LSD and whatnot are not based in science or didn't consider that people weren't taking them in optimal conditions. There is even a great scientific journal written by Stanislav Grof available online for reading. But anyway I don't want to argue about that because people have strong opinions about drugs. What I do want to point out, though, is that every single time I've taken them they have solved a bout of discombobulated digestion if I was having it and definitely helped work through any life problems if I was having any.

There is positive drug use and there is negative drug use.

There's a whole article in the current Journal of Gluten Sensitivity about the correlation between the symptoms of LSD ingestion, and schizophrenia, due to the commonality of psycho-active peptides from gluten grains, LSD being refined from ergot, a grain mold. It's an interesting idea.

[sandsurfgirl]

You are wrong on many fronts, no offense. Go ahead and look on erowid. Most arguments about LSD and whatnot are not based in science or didn't consider that people weren't taking them in optimal conditions. There is even a great scientific journal written by Stanislav Grof available online for reading. But anyway I don't want to argue about that because people have strong opinions about drugs. What I do want to point out, though, is that every single time I've taken them they have solved a bout of discombobulated digestion if I was having it and definitely helped work through any life problems if I was having any.

There is positive drug use and there is negative drug use.

Do what you want but clean living is the only way to fix your health and slow down aging. Of course you felt better temporarily from getting high. That's how drugs hook you. And the placebo effect would explain why your stomache felt better. Not arguing. Discussing. You are so young and you have a serious autoimmune disorder. Give yourself a fighting chance at having a healthy normal life. Benefit versus risk analysis is crucial when you are looking at something that can potentially harm you. Maybe there is some medical benefit, though I'm doubtful, but really with the addictive potential and all the negatives, is it worth it?

I grew up around a lot of drugs and I did not do them. Let me tell you, I'm 40 now and my friends who did drugs do not look like I do at our age.

[sandsurfgirl]

Pyro, it's hard to read someone's tone on a message board, so please know that I'm not being argumentive or trying to give you a hard time. It's the mama in me that's talking to you. If you don't hear me now, one day you will and hopefully you don't remember this conversation with regret and wishing you had done things differently.

[RiceGuy]

Right now two things are jumping out at me on this discussion.

1) Feeling constant thirst even while drinking a huge amount of water - this could be an indicator of an electrolyte imbalance. I couldn't drink enough until I started taking a potassium supplement. It took about two weeks for things to normalize, and I am still taking the potassium of course.

2) You're eating a lot of Open Original Shared Link vegetables. Not everyone dose well with these. So you might try avoiding them for awhile and see what happens.

And yes, iron can easily constipate. Personally, I don't think that liver pill you're taking is doing anywhere near what you need. NOW Foods makes a few multi-vitamin/mineral formulas which have a fairly good balance of nutrients. But again, a pill cannot contain all the body needs. Not even close. That's why astronauts can't just take a few pills and get back to business. They still have to eat real food. Every ounce of weight is important, so if they didn't have to take food along, they wouldn't.

Keep in mind also that the liver tends to become full of toxins, and thus you're getting that stuff too. That's one negative side of such "whole food" supplements. Another thing is that good supplements are designed for optimal absorption. Each nutrient is formulated so that it is more bio-available than it might be from ordinary food sources. That's not the case with "whole food" supplements.

Supplements are just that. They supplement a healthy diet, not replace it. And since Celiac has a way of crippling the intestine's ability to absorb nutrients, it takes more than just swallowing those nutrients to get them into the bloodstream. Some nutrients enhance the absorption of others, while some inhibit the absorption of others. So when you're having trouble absorbing certain things, it is often advised to get those nutrients which compete for absorption at different times of the day.

[sandsurfgirl]

There's a whole article in the current Journal of Gluten Sensitivity about the correlation between the symptoms of LSD ingestion, and schizophrenia, due to the commonality of psycho-active peptides from gluten grains, LSD being refined from ergot, a grain mold. It's an interesting idea.

Your synopsis sounds like the article was saying that LSD causes the symptoms?

[ravenwoodglass]

Your synopsis sounds like the article was saying that LSD causes the symptoms?

The article is likely saying that the effects of gluten on the brain, which can cause schizophrenia (and also depressive and anxiety) are similiar in action to the effects of LSD in the brain. It's about time the GI world recognizes the mental effects of gluten on our brains. So many of us suffer from mental illness in one form or another that is caused by the gluten reaction in the brain which can lead doctors to think us to be mentally ill and that our 'depression' or other physical issues are mental in origin not physical. Many of us are told for years that our issues are 'in our heads' that it can be a real struggle. This can keep us from being diagnosed, especially the 20% of us who show a false negative on testing. This research is a good thing and does not advocate LSD use but is trying to explain the gluten action in the brain.

[Jestgar]

Sure! I'm not sure how much I'm allowed to share here but a good site to look this up is erowid dot org. Things like ayahuasca and peyote (favorite drug by far) are greatly connected with cleaning out the mind/body but people still have success with other things like mushrooms and LSD. LSD has even been successfully used to treat many cases of neurosis and even schizophrenia.

Fascinating. Since I am very fond of both caffeine and alcohol myself, I can't say much about someone choosing other drugs to get them through their days. Just remember there is a fine line between using and abusing. Don't cross it.