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For a Celiac Sufferer, a New Mystery Illness

By JONATHAN PAPERNICK

The problems began not long after I moved in with my future wife. I was losing weight at an alarming rate, drifting for hours after meals in a confused fog. My acid reflux was so bad I felt like I had a golf ball lodged in my throat. I suffered from otherworldly constipation and had no sex drive. My tongue swelled like a wet sponge. It seemed everything I ate contributed to my misery.

These symptoms weren’t the ones familiar to me from my mid-20s, when I’d learned I had celiac disease. People with celiac can’t tolerate gluten, a protein in wheat found in many foods and everyday products. When I ate gluten, my sides ached and my small intestines felt as if they had been rubbed raw by sandpaper; I felt tremors throughout my body and deep, deep exhaustion. My mother lived with celiac disease for most of her life, and after overcoming years of willful ignorance of my mother’s condition, my health finally improved when I began avoiding wheat and other gluten-containing grains.

Now even gluten-free foods caused my throat to tickle and my head to throb, and I had no idea why. I had painful canker sores all the time. I couldn’t understand how I could have solved one mystery by removing gluten from my diet, only to be baffled by another, more frightening, condition.

My future wife was afraid I was dying and wondered seriously whether I was somehow allergic to her. By the time we were married a year later, several allergists had told me that I had no allergies at all. Gastrointestinal doctors blamed my mysterious affliction on stress. An acupuncturist said my chi was out of whack. I was tested for parasites and came up clean. More than a few friends and family members suggested indelicately that my problems were all in my head, or worse still, that I was simply seeking attention. I couldn’t even look at the skeleton resembling myself in the mirror anymore.

Illness can do strange things to an ordinarily rational mind, and I was desperate to find a solution. A friend told me about a new-age treatment that claimed to resolve undiagnosed health problems. After shelling out several hundred dollars for a consultation, I was informed that my problems were caused by “energy blockages,” disruptions in the normal flow of energy through my body’s electrical circuits. The practitioner said she could permanently cure me simply by treating my pressure points while I held in my hand a vial of charged water containing the same properties as the allergen. Apparently, a minimum of 30 to 40 treatments would be necessary to help me gain back chicken, potatoes, rice, beans and other staples that I had relied on my entire life. For more than six months I paid good money for treatments that did nothing to help me, the practitioner always promising that next time I was due for a breakthrough that would allow me to once again eat my favorite foods. I should have been more skeptical of this miracle cure. But with more and more foods finding their way onto my blacklist, I could not afford cynicism. I needed a miracle and nothing less.

My wife had had enough of my indulgence in expensive, unproven “voodoo” medicine, and she put out a frantic call to her friends and colleagues asking for help. A friend passed along the name of a doctor known to have success with people thought of as incurable — the last resort for many seemingly hopeless cases.

Within minutes of meeting the doctor and explaining my symptoms, he was certain that he had pinpointed the source of all my problems. Yeast.

He took a blood test just to be sure, and as predicted, my yeast levels were off the charts. He explained how Candida albicans, an aggressive sugar-eating yeast that had been colonizing my intestines, is a common concern for celiacs, whose tiny, hair-like villi in their intestines have been flattened and damaged by gluten.

Under normal circumstances, the majority of the human population lives with Candida albicans in their digestive systems without any problems. But I listened with horror as he explained how the roots of the Candida were starting to break through the walls of my intestinal tract, causing a leaky gut through which microscopic bits of food were entering my bloodstream.

I was ordered to cut out all sugar, alcohol, fruit, starch, peanuts and mushrooms and told to eat protein and vegetables with low sugar content. I was allowed kale and collard greens, but carrots and red peppers were off the list. I was taking no less than 12 different supplements, including probiotics and digestive enzymes, to heal my system. My compromised digestive system couldn’t even handle ordinary calcium supplements, and my wife and I sat at our coffee table filling gelatin capsules with white calcium powder. (You can imagine what it looked like to an unknowing visitor.)

The doctor prescribed an antifungal that would work slowly to kill off the unwelcome aggressor. Every time I took the medication, even at the lowest possible dose, I felt like I’d been struck down by the flu as the invading yeasts died off — evidence of how serious my problem was. It would take a long time to reverse the damage that the Candida had done, but I was finally on the right track.

When I didn’t improve as quickly as my doctor expected, he sent a mold remediation specialist out to our apartment to check out our living situation. There was black mold in our closets and on our walls, and the air shaft that was supposed to provide fresh air to three of our rooms was full of pigeon feces and filth. I was shocked to learn that our New York City apartment was slowly killing me.

My doctor explained that others could live perfectly normal lives with this mold, but in my case, with a compromised immune system, the toxic mold was simply piling on a heavily taxed system and adding fuel to the Candida — the literal last straw. We were ordered to clean our walls with hydrogen peroxide and to purchase an industrial-strength air filter with an infrared beam to get rid of the mold. The hydrogen peroxide had little effect, as the tenacious mold seemed to reappear within days.

I slowly reintroduced foods back into my diet, starting with a simple forkful at a time. However, with every slice of potato, mouthful of rice, nibble of chicken, I felt my head throb, my throat tickle. My doctor suggested that we move, and before long, a job opened up in Boston. I packed up and left town — four months ahead of my wife, who still needed to wrap up things with her job.

Within weeks of living in New England, I started to improve, slowly, ever so slowly, and I found the courage to reintroduce foods back into my diet. It took years, not months, as I followed the doctor’s strict diet, which included egg whites and spinach and tuna for breakfast. Eventually, gradually, thankfully I got better.

I have since gained the weight back (and then some) and have started a family. With the increased availability of allergen-free medicines and supplements, and my own hard-learned lessons, I am now able to enjoy life all over again. But I can’t help but wonder how many people with celiac disease have suffered unnecessarily because so many doctors are not prepared to deal effectively with the condition.
 
Thought I'd post an update and get some feedback on my weight loss.

I went and saw my doctor a few weeks back, who sent me for a chest xray and blood tests. The results came back fine for everything (xray, thyroid, immune system was slightly elevated but in 'normal' limits), except my liver function is elevated (didn't ask at the time which one and by how much).
He's sending me for an ultrasound on my liver.

I've been piling in the food, I have two breakfasts (one after each other). A full plate of pancakes with blueberries and banana on, followed by another full plate of quinoa, vegetables and minced beef or fish.
Lunch is more veg, quinoa and minced beef or fish. Evening snack of pancakes and an apple.
The evening meal is veg soup with fish (or somtimes veg soup, followed by a plate of quiona with beef or fish), followed by pancakes with blueberries and banana on.
The pancakes and meat is cooked in a large amount of coconut oil. Ghee and olive oil don't seem to sit with me....they give me muscle pain, and strangely they seem to give me dry skin too :huh:
At the moment I seem to be gaining a pound a week (about 500g).....however the things that seem to effect this gain or loss appear to be my magnesium levels and how much caprylic acid I'm taking.
On some days where I've felt good I skipped my magnesium oil in the morning/afternoon...and/or the oral magnesium citrate....and/or the caprylic acid with each meal. When I did that my weight was down the next day.....on the days I take caprylic acid with each meal, oral magnesium citrate two/three times a day (300mg each time) And spray magnesium oil all over first and last thing do I seem to hold on to/gain the weight.

I seem to have a cycle of things going well then feeling utterly horrid again (muscle pain, head fog, fatigue and generally feeling like I've had enough [physically]...or even that my body is literally falling apart/dying). If the bad days out way the good days I'll be back to the doctor...maybe they already do? I can't seem to get up before 9am and even then could sleep the entire day.....this is causing real problems getting to work on time (in that I don't and haven't been for a month or 3).....which means I work late every day to make the time up.

My guts generally seem good, no gas or bloating, food being well digested and nothing apparently abnormal. No obvious signs of candida infection? I don't sweat much, and have very little body odder. But the above article Laura posted is always in my mind.

If anyone has any ideas let me know....will keep on keeping on.
 
Thank you RedFox for the update. The magnesium tip is interesting.

I seem to have a cycle of things going well then feeling utterly horrid again (muscle pain, head fog, fatigue and generally feeling like I've had enough [physically]...or even that my body is literally falling apart/dying). If the bad days out way the good days I'll be back to the doctor...maybe they already do? I can't seem to get up before 9am and even then could sleep the entire day.....this is causing real problems getting to work on time (in that I don't and haven't been for a month or 3).....which means I work late every day to make the time up.

I can say that when I pass trough cycles like this, for me the only thing that works is light exercise. An immediate elevation in mood, generally energy level comes back, at least for the day, and the head fog is probably the first one to go.
Walking fast enough so you don't give the intellectual center time to concentrate on things. I find running for 10-15 min to be medicine. There are a lot of good exercises I can think of -like push ups/pull ups with deep and controlled breathing are also very effective for me.
Whatever are physiological changes that occur in the body at the time of physical exercises and are of direct influence to the psyche are probably still a mystery for medicine.

Hope this helps.
 
Hi Andi
Thanks, that does help. I did use to exercise quite a lot (cycling long distance or running), but got to the point where I would feel ten times worse after exercising so pretty much stopped anything other than a brisk walk. I don't feel up to much exercise at the moment, but when I do I will consider it.

Another update, there was a cancellation at the hospital so I got to have my ultrasound this morning. That was really cool!
I'm not sure how many people get a chance to see there internal organs like this, but if you do get a chance it is really interesting.
The woman doing the scan showed me each thing she was looking at, and said there was nothing bad she could see (the images have to be analysed closely later I think). Nothing inflamed or enlarged, no fatty deposits, no gall stones, no obvious cysts/damage to the liver.
Only two (minor?) concerns....they could see me pancreas really well (which surprised them) because of my complete lack of any abdominal fat....I wouldn't be at all surprised if that picture ends up in a text book somewhere it was so clear. The other thing was that looking at my aorta (the main blood vessels next to the spinal column - ironically the only things that had a small fat deposit around them) they where slightly enlarged.
So its possible I may have to go back and have an ultrasound on my heart (the women doing the scan said the xray on my chest was only to check for enlargement of the heart).
I'm eating quite a lot of salmon, but had stopped taking fish oil/flax oil a while ago.....I'm wondering if this may be related?

So apart from the unexplained weight loss (and lack of any internal fat? I'm presuming this is probably a bad thing) I'm in good health it seems :huh:

I'm going to try and work out how many calories I'm consuming a day and report back.....but I'm pretty sure its well over the daily recommended amount for men (2500).
 
So I've worked out my daily average calories, and they are 2200.
Looking up what is recommended for my height/weight/age (and sitting at a desk all day) it suggests my maintenance intake should be 2000 calories.
I wonder if exercise and eating more (not that I feel I can stuff much more down there) is the way to go?
 
Didn't know there was a thread dealing with this topic!

I recently wrote about my weight loss issues here. http://www.cassiopaea.org/forum/index.php?topic=10573.msg187548#msg187548

Since April of last year I went from 140 pounds to now fluxuating between 120/123. I've been racking my brain on how to put weight back on without turning back to breads, pastas, pizza's, pastries, etc.

Laura said:
Are you getting plenty of fats of the various healthy kinds? Do you put plenty of olive oil on your veggies, cook your meats in a good fat like lard or duck fat? Eat plenty of butter? Buckwheat cakes? Make nice meat gravies with buckwheat flour and fat and slather it on your buckwheat cakes, quinoa, etc? What's your blood type?

banjoechef said:
Something that helped me gain back weight was a supplement of hulled hemp seeds. I took about 3 tablespoons a day and that is when I began going back up from the 135 to 150.

Redfox said:
At the moment I seem to be gaining a pound a week (about 500g).....however the things that seem to effect this gain or loss appear to be my magnesium levels and how much caprylic acid I'm taking.

Thanks everyone, these are a few things to try and see if they have an effect. Redfox, I counted 5 meals a day for you, 2 of which are at the same time. 5 hearty meals seems to by my number to meet if I want to put on weight. The problem being, is that if I skip out on a day then I lose all the weight that I spent a week trying to put on.

Question, do any of you smoke? I'm wondering if that play's a part in the inability to gain weight. I'm considering testing this out and stopping for a month and see what happens to my weight, whether my metabolism slows down a bit and I put on some weight. I've been smoking since last year, the same time I really started altering my diet, so I'm wondering if it could be a combination of both that are contributing to weight loss.
 
Hi RedFox

I sense in your posts here, and related others, on the forum, that you may be running a self-sabotage programme. For example: skipping supplements (both here and in other threads this is mentioned), stopping exercising, and problems getting to work.

For a person with a sedentary work life, you may like to consider 'walking for a minimum of 30 mins a day', as exercise, or 'interval training' - the 'Mercola sense' of short sharp bursts of activity followed by periods of rest as another form of exercise. Certainly long distance/duration activity may well show up in your adrenals as fatigue/exhaustion.

This may help, or not, as the case may be. :)
 
DanielS said:
Question, do any of you smoke? I'm wondering if that play's a part in the inability to gain weight. I'm considering testing this out and stopping for a month and see what happens to my weight, whether my metabolism slows down a bit and I put on some weight. I've been smoking since last year, the same time I really started altering my diet, so I'm wondering if it could be a combination of both that are contributing to weight loss.


Well, I smoke but lost weight after stopping bread. I have't tried to stop smoking and see if I'll gain any weight, but I doubt that It will make any difference for me (fast metabolism); I have good appetite, eat a lot and gain nothing.
my2cents
 
andi said:
DanielS said:
Question, do any of you smoke? I'm wondering if that play's a part in the inability to gain weight. I'm considering testing this out and stopping for a month and see what happens to my weight, whether my metabolism slows down a bit and I put on some weight. I've been smoking since last year, the same time I really started altering my diet, so I'm wondering if it could be a combination of both that are contributing to weight loss.


Well, I smoke but lost weight after stopping bread. I have't tried to stop smoking and see if I'll gain any weight, but I doubt that It will make any difference for me (fast metabolism); I have good appetite, eat a lot and gain nothing.
my2cents

I have the same thing with my metabolism as well. I'm wondering though if there is a connection of some kind. I hear so often of people who smoke and it helps them regulate their weight, but when they stop smoking they put on the pounds only to lose it again when they start smoking again. If I can muster up the will to not smoke for a month, I'd like to see the results, if there are any to report.

I'm kind of hoping there isn't any results, because I rather enjoy a good smoke, and wouldn't want to have to choose b/w gaining weight back and smoking, but, we shall see, I guess.
 
DanielS said:
andi said:
DanielS said:
Question, do any of you smoke? I'm wondering if that play's a part in the inability to gain weight. I'm considering testing this out and stopping for a month and see what happens to my weight, whether my metabolism slows down a bit and I put on some weight. I've been smoking since last year, the same time I really started altering my diet, so I'm wondering if it could be a combination of both that are contributing to weight loss.


Well, I smoke but lost weight after stopping bread. I have't tried to stop smoking and see if I'll gain any weight, but I doubt that It will make any difference for me (fast metabolism); I have good appetite, eat a lot and gain nothing.
my2cents

I have the same thing with my metabolism as well. I'm wondering though if there is a connection of some kind. I hear so often of people who smoke and it helps them regulate their weight, but when they stop smoking they put on the pounds only to lose it again when they start smoking again. If I can muster up the will to not smoke for a month, I'd like to see the results, if there are any to report.

I'm kind of hoping there isn't any results, because I rather enjoy a good smoke, and wouldn't want to have to choose b/w gaining weight back and smoking, but, we shall see, I guess.

I don't know it it is of any help to you but I switched to pipe smoking a week ago. I tried to smoke a cigarette and I was amazed to see just how bad it tasted compared to pipe tobacco. Today I made my own flavored tobacco with natural vanilla essence and lemon juice. The tobacco I buy is almost natural and after the mix was passed through the oven, the result is very good.
What type of cigarettes are you smoking? Are they the ones with plenty of chemicals, if so, getting them out of the system by replacing them with something better might help with the weight gain. And if you really want to stop them completely ,you could make your own nicotine less tobacco very easy, like the one used in Sisha for example.
I doubt that it is nicotine itself that is causing the loose in weight but rather all that is around them specially the paper and burning plastic filter.
The smoke form the tobacco I prepare is really smooth, nothing like a cigarette but still delivers good amount of nicotine.

I will monitor my weight and report back.
 
Hi DanielS
No I don't smoke, although I have done on and off in the past for short periods. It didn't seem to effect my weight, but was only over short periods.

Trevrizent said:
Hi RedFox

I sense in your posts here, and related others, on the forum, that you may be running a self-sabotage programme. For example: skipping supplements (both here and in other threads this is mentioned), stopping exercising, and problems getting to work.

For a person with a sedentary work life, you may like to consider 'walking for a minimum of 30 mins a day', as exercise, or 'interval training' - the 'Mercola sense' of short sharp bursts of activity followed by periods of rest as another form of exercise. Certainly long distance/duration activity may well show up in your adrenals as fatigue/exhaustion.

This may help, or not, as the case may be. :)

Hi Trevrizent, I think you may be correct. I have been starting to see (mostly from others telling me) a lot about myself recently, and this seems like an observation to add the picture I'm building up.

I observed some interesting things the afternoon of the scan, as I was not allowed breakfast I did not have any food until lunch time and tried to fit in all of my food throughout the afternoon. This produced the familiar (but recently forgotton) feeling of severe fatigue and a painful ache all over my body....this is the same one I was getting when eating fats (like olive oil/ghee), or before starting the ultra simple diet when it was suggested I just needed to eat more to gain weight, and this pain.fatigue has been with me on and off since being a teenager.
I did think it was food allergies.....it seem however that (as the food I am eating now is not setting off allergies) this is not the case....and the only conclusion I can come up with is because I ate the same food over a shorter period of time my body had more excess calories floating around it than it needed (which should then be stored as fat).
I realised that this pain is probably the reason why I may not have been eating enough, simply to get relief/feel ok......realising that I simply may not have been eating enough to hold onto my weight was quite an emotional thing to admit to myself. I'd totally forgotton about this pain until now.
This is the same pain that kept scuppering any regular exercise, and when its really bad just makes me want to sleep (to the point where I'd fall asleep even if I was stood up if I wasn't careful). I've suffered from this for at least 15 years and I've had enough of it.

Well at least I can identify the cause of my behaviour....even if I can't identify the cause of the pain.
I had a peppermint tea with cocoa powder (mint chocolate!) that evening and it relaxed me no end....I actually felt the tension in me drain away, and the pain disappeared after 15minutes....that was new! I drink peppermint tea sometimes, but it never has this effect.....wether its something in the cocoa powder or if it was just a pain killing effect I don't know. For the first time in ages I've had a lot of energy that I could actually do something with! It doesn't last long, but that mint chocolate tea seems to be giving me a small window of relief.
Interestingly the pain is now more localised instead of all over....mostly in my shoulders/head/neck, and joints in general.
My dad suggested perhaps I've been stressed all this time?

If anyone knows what this may be, I'd love to know so I can fix it. Will talk to my doctor about this next week, and try and do some research. Trouble is muscle pain, fatigue/sleepiness seems tied to many things.....although perhaps excess calories in the body is the clue? If that is what it is.
 
Redfox, you made me think a bit on this one because I realized something. A little experience not to long ago makes me think that it is possible to have that fatigue (that you are talking about) but not directly related to food. I live with my parents and well, maybe you know what that is. The moment they leave the house and I know that they are going somewhere where they are going to feel good, then immediately a veil is lifted of my head; it really feels like you are in an altered state, but no that is just the normal state I should be in all the time. The mental fog goes away and my energy level rises.

It stresses me permanently, it appears, to know they are stressed and slowly giving up on life while taking me down with them. This fatigue, I have it all the time, judging it to be normal and not really a fatigue, it's like an energy prison you can't smell or taste and it consumes you everyday but then, you have this little escape/experience and you see how it is really like and then you realize something is wrong.
In my home there is constant pressure, it is not heavy but it is constant and the fatigue I get from that is very similar to the one I get after having a big fat dinner. Now that I look at it, I can see why sometimes I don't eat - so I don't get that similar feeling/reaction.

Maybe ask you father why he thinks you are stressed all the time.

What is your relationship with those you live around?
 
Hi Andi I know what you mean.
Things are generally better than they use to be when it comes to this sort of draining, but it sure does make a difference when my parents spend time away. trying to find enough of an income to move out is a problem, so I'm grateful for my parents support.....I'm sure they wish I'd move out as much as I'd like to be able to afford my own place.
For all I know I have a draining effect on them too.
My relationship with my parents is pretty good.....except due to fatigue etc I tend to clutter up there space.

Thanks for the reminder as thinking about it, its probably not all to do with weight/diet....
I'm going to have to work out a way of not exposing myself to non-colinear people too much.....
 
Just a small update to say I went back to the doctors for the results of the scan, and as the lady doing the scan said there are no problems with my liver etc.
It is quite relieving to know that things are in good (visible) shape.

We discussed past symptoms etc and he asked if I'd considered IBS/chronic fatigue? I thought 'yes but your the expert, aren't you supposed to be working out what's wrong with me, not relying on what I 'think' it may be?'. So I reminded him of a previouse visit to another doctor where he had suggested I may have IBS and to try pro-biotics....

In the end he referred me to the 'gut' (can't spell the proper medical word for this type of doctor!) expert....which I would hear from in 3-4weeks....they will probably be testing for celiac disease (I told him I hadn't eaten wheat for 2 years!), probably by getting me to eat wheat and then taking a biopsy (this isn't confirmed yet).
:(

I left feeling pretty angry actually.
Something had upset my stomach (I think) the day before....quite possibly eating sweet potatoes. So I'd gone there feeling really run down and aching all over (again).

Had a rant, followed by a nice cocoa/peppermint tea and calmed down. As far as doctors go he's pretty good...but one thing I've learnt is they don't seem to either know about or want to go into certain subjects....I can't work out which it is.

In the end I think I'm angry about a few things....firstly that I hadn't been taking better care of myself, and that I may well not have been eating enough. Secondly that I seem to know more about (and be better at working out) what's wrong with me than the doctor does.....I think I'm angry about that because of those around me pushing for me to go see a doctor....which I guess comes back to the first point.
My girlfriend wants me to go for the wheat test if that's what's suggested, my mum says I can decline if I want (she's just happy my weights slowly going up and that I'm not taking so many pills and powders).
So I have a gaping hole in my strategic enclosure (and my ability to see my own problems) when it comes to health issues it seems.

My weight it seems is to do with whatever the underlying condition is that causes my fatigue and my whole body to ache. Eating less than my body needs stops this problem.....changing my diet has helped, but the problem is still there....if I eat enough calories to gain weight I get the fatigue and all over body ache.
My thought on this is systematic candida....but a low grade infection perhaps. I had run out of caprylic acid a week ago, so got some more and took a large dose this morning. Well the pain in my guts came back...I guess something was being killed off. Now I'm groggy/tired (but not foggy).....feels like die off symptoms.
So I'm thinking that I need to do some sort of heavy metal detox to stop the candida reoccurring....if it is candida. From my observation of where I have had pain in my guts I'm thinking that my liver has been getting rid of something (a heavy metal?) only to have candida/gut damage/inflammation to occur around the bile duct and small intestine, the toxin then re-entering my system. :rolleyes:

That's the best working hypothesis I can come up with so far. Now I need to test it out and see what happens.
 
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