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I had an autoimmune disease, then the disease had me (2013)

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Re: I had an autoimmune disease, then the disease had me (2013)

#81
post #72

I feel bad for the people who have told of their issues and suffering in the comments here. But I have to say that every time I see a health article on HN (or in the news) as well as the comments about individual cases it draws me in and gets me down. No benefit. I only get anxiety as a result. I have found this to be more the case in the past several years with what I call (as only one example) the 'cancer industria…

Yeah. I actually have a lot of stuff in common with the author of the article. (low platelet count, low thyroid function, low vitamin d, low iron, (also high uric acid)) And my aunt has rheumatoid arthritis. I've also always had a serious peanut allergy + a few other minor ones. Except that, I feel fine. I'm 34, I do lots of cycling and hiking, and work on making computer games in the evenings. Reading stuff like thi…

> I only found out about the above details when I went to doctor for 1st time in like a decade for dizziness

I go to the doctor every 6 months for a checkup and lab work. I got into the habit of having the lab work done (request the script) the week before the appointment. That way I wouldn't have double anxiety. Prior to that I'd meet with the doctor, he'd give me a script and then I'd have to wait for him to call with the results. Also found it was helpful to schedule other appointments (eye, dental) around the same time. Compact all the anxiety into a 2 week period.

One thing that is good is my wife is an internal medicine doctor but deals usually with really sick hospital patients. So typically anything that I am concerned about I can just ask her and she can put my mind to ease. (So far hah hah).

The only upside to the anxiety that I have (I wouldn't call it severe but it's noticeable) is that I get a definite mood bump right after an appointment when I find nothing is wrong. [1]

[1] So hey since you don't go every year or more you don't know what you are missing!!!

Re: I had an autoimmune disease, then the disease had me (2013)

#82
post #32

Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?

Celiac disease is an autoimmune disease that can be controlled entirely via diet; specifically because people with it cannot process the Gluten found in wheat.

(Fun fact: Rice has gluten too; but it's not a variety that people with Celiac have trouble digesting).

Re: I had an autoimmune disease, then the disease had me (2013)

#83
post #32

Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?

I have nasal polyps (an autoimmune problem). Quitting added sugar helped a ton (and then I lost 10kg by accident).

Re: I had an autoimmune disease, then the disease had me (2013)

#84
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Hi orbitur,

I too used to suffer from allergies, psoriasis, arthritic joint pain. But I cured mine without any drugs. Doctors were of absolutely no help whatsoever. They have a better living through chemistry approach to "healthcare". I figured out the root cause through many years of suffering and experimenting and trying everything I could think of once I realized that doctors are completely useless for anything but acute medical issues.

Let me give you a short history of my health history so you can understand how I arrived at the solution. At 6 months old, I had severe hay-fever. This continued until I figured out the root cause. At 10 years old I developed psoriasis, first around my anus, then my elbows, knees, later on my ankles (anywhere where there was rubbing, or if I leaned on my elbows, or kneeled on my knees). It would form hard white scabby formations that itched like crazy and would bleed. Later in my 20's, I had patches under my hair, under my toenails (the doctor's thought it was a fungal infection), and on my tongue.

Around 30, I started to develop severe constipation. Had internal intestinal bleeding, and the constipation got so bad I started having panic attacks. My body was in a constant state of heightened adrenaline and I had adrenal fatigue. I was constantly tired, needing constant naps, but I couldn't sleep more than a couple hours, so at night I had insomnia. I had a constant headache, and brain fog. Sometimes I couldn't even remember by friends names.

Throughout my doctor visits, I was prescribed allergy meds. Cortisol for the psoriasis (which I'm allergic to). Coal tar cream did help for the psoriasis, but it just got rid of the itchy scaliness and then it didn't bleed. Later when I had panic attacks, I was put on paxil and ativan. But I couldn't function, I couldn't do my job (software engineering/management). With the severe constipation, not going for 7 days or more. I was told to take laxatives, Metamucil, eat more fiber (even though I had upped it and it seemed to make my problems worse). The last gastroenterologist after doing, upper GI, sonograms, blood tests, etc told me I needed to see a psychologist. Even though I knew my problem was my body was causing stress, not that stress was causing my body issues.

Sometimes it would get better for a while, then it would flare up all over again. My life, my entire life had been miserable. I never smiled, I was angry all the time. But it was my normal, and I never knew that most people didn't feel this way. I quit my last salaried job in 2011. And it was then, that I finally figured it out. I quit to work on an iphone game. And now, without all the structured living (going to a job M-F, living a set schedule, wake up at a certain time, eat at certain times, go to bed at certain times) I began to experiment. I slept when I was tired and could, I worked when I was alert. But I also began to cook a lot. I started making all sorts of breads, muffins, cookies, experimenting to make the perfect pizza crusts. And that's when I noticed that if I ate a lot of wheat products my symptoms would flare up. Sometimes to the point that I would just lay in bed for a week, getting up to eat and use the bathroom, but in constant pain. And to top this off, around 10 I had some rye bread it made me so sick. In my 20's, I had to stop drinking beer, because it made me so sick. Even made my forever stuffed up nose worse and causes a sinus headache. A headache which was the source of the brain fog, which I would realize later.

It was around this time I kept seeing the gluten free diet craze. Which I paid no attention to, because my symptoms were the exact opposite. Celiacs have constant diarrhea, I had constant constipation. But at this point, I was desperate, doctor's were utterly useless. And I decided, what would it hurt to try to go on a gluten free diet? So I went on a strict diet of meat, lots of fat and vegetables, I also eliminated all dairy. No packaged processed foods, gluten is hidden everywhere. After about 6 weeks, I felt amazing to the point of euphoria. My digestion starting working again. And oddly my psoriasis started to clear up, I had not expected that at all. After 6 months all of the psoriasis was gone, completely gone.

This worked for a year or two, but I din't feel as good as I did sometimes. And I noticed all grains had a similar but weaker effect on my constipation. So I eliminated all grains, and my allergies vanished. Over the years if I eat a small bag of frito's my allergies will come back within 24 hours, but after 3-4 weeks they will disappear again. And I can go out and enjoy the smell of freshly cut grass, flowers. Ragweed can be in hyper pollinating mode and I might have to blow my nose a couple times instead of my eyes turning red and burning and having a constant stream of snot running out of my nose.

But my hip hurt, my knees, elbows, and fingers ached from arthritis. And having seen the miraculous effect that food had on my other conditions I searched for a solution. I began to notice that if I had a big plate of potatoes, paprika chicken, hot peppers it seemed to flare up. So I eliminated all nightshades. And after about a month my arthritis went away. I no longer was constantly popping my knuckles, and popping my vertebrae when I woke up in the morning. In fact I can no longer pop them, as they don't get stiff.

I'm going to be 42 this year and I have never felt this good in my entire life. I sleep like a baby, my mental sharpness and ability to quickly and efficiently hold big problems in my head and come to solutions is beyond amazing. Since figuring out the gluten problem, I started my own company. I have a product under development, but I'm so swamped with consulting work that I have not had much time to work on it. I work 100% from home. I am filled with profound joy and happiness. I no longer feel anger, stress. I have no problem striking up conversations with strangers. I'm a completely different person.

Throughout the years since figuring out my problem, I have accidently eaten gluten, grains, nightshades, dairy. And the sypmtoms will come rushing back. But if I avoid the foods (poison), after 2-3 weeks I'm good again. I no longer eat out, I no longer even eat what other people have made special for me, as that is a source of accidental exposure. I make all my food 100% from base ingredients. Unprocessed meat, fresh vegetables, fresh fruits. Lots of Extra Virgin olive oil and animal fats. In fact about 65% of my daily calories are from fat. About 10% of carbs from fruits and vegetables, no processed sugar. I was never fat, but after eating like this I lost so much weight 155-> 131. That I upped my food intake, as I was too skinny. I have to work hard and sometimes force myself to eat an extra meal to maintain the 140 that eventually got back up to. I sit at a desk all day, don't exercise but have 6 pack abs. Every time my ribs start showing too much I have to eat an extra meal for a couple days. So I also discovered why most people are fat.

I have since run across a famous quote, which would have meant nothing to me before, but is a fact of life for me now.

Hippocrates — 'Let food be thy medicine and medicine be thy food.'

If you want advice on how to try this experiment on yourself, send me an email (cmerinsky at gmail.com). After all, what do you have to lose?

Re: I had an autoimmune disease, then the disease had me (2013)

#85
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

There are now very effective treatments for psoriasis to the point that most patients can be clear or nearly clear of the disease. These range from UVB light therapy to drugs such as methotrexate and ciclosporin and a growing number of monoclonal antibodies such as adalimumab. Clearly these treatments do have some small risk attached so there is a trade off between how greatly the psoriasis is concerning you and the (small) potential for side effects. You can discuss this trade off in detail with your dermatologist.

COI: Dermatologist

Re: I had an autoimmune disease, then the disease had me (2013)

#86
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Hi orbitur, I too used to suffer from allergies, psoriasis, arthritic joint pain. But I cured mine without any drugs. Doctors were of absolutely no help whatsoever. They have a better living through chemistry approach to "healthcare". I figured out the root cause through many years of suffering and experimenting and trying everything I could think of once I realized that doctors are completely useless for anything bu…

ChristopherM, this mirrors my journey/experience as well.

I never took diet quite seriously and dismissed most anecdotal connections between gluten, grains, sugar, etc. and health.

But at 40 yrs old, and after nearly two years on an autoimmune paleo and anti-fungal diet, I've never felt better.

I wish more people suffering with autoimmune conditions were aware of this natural approach to healing and recovery.

Re: I had an autoimmune disease, then the disease had me (2013)

#87
post #85
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

There are now very effective treatments for psoriasis to the point that most patients can be clear or nearly clear of the disease. These range from UVB light therapy to drugs such as methotrexate and ciclosporin and a growing number of monoclonal antibodies such as adalimumab. Clearly these treatments do have some small risk attached so there is a trade off between how greatly the psoriasis is concerning you and the…

While YMMV, from a patients perspective, with severe psoriasis and psoriatic arthritis, you want to get to biologics as quickly as your healthcare system (or budget if you have fu money) will allow.

Insurance companies love methotrexate because it is cheap. It has a far higher NNT than the biologics, is less effective at clearing psoriasis, and has horrible side effects.

Re: I had an autoimmune disease, then the disease had me (2013)

#88
post #65

Earlier quoted context omitted.

I'm currently seeing a functional medicine MD recommended by my rheumatologist. Functional medicine doctors are really into the gut-immune side and my rheumatologist says he's seen some amazing results. I've been on an elimination diet for about 2 months without results, but in almost every paleo/aip/whole30/pfd cookbook I've been reading, the author's bio says something about recovering from autoimmune disease throu…

One thing that helped me (though I'm not yet finished recovering from a period of high stress) was to do the things that strengthen the gut barrier. As long as the barrier is permeable for large particles, you will have foreign objects floating around and your immune system attacking them. Here is a very long article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2.... Specifically, strains like Bifidus L…

Interesting, that is what my doctor said as well. I did test positive for SIBO, so I am currently taking rifaximin which should help. I had a friend with various vague problems as well and he said he felt 75% better after getting treated for SIBO and candida. I've also been taking digestive enzymes, betaine hcl and iberogast but they don't seem to being doing anything.

Before I started seeing this doctor, I did take VSL #3 which greatly helped my relatively mild stomach/digestive problems, but did nothing else. I know there are quite a few people with severe Crohn's/UC that have achieved remission by taking massive amounts of it daily.

Re: I had an autoimmune disease, then the disease had me (2013)

#89
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

From what I've seen of psoriasis and psoriatic arthritis doctors will prescribe basic emollients and moisturisers but do little to find long term cures on an individual basis.

The best results I have ever seen in getting rid of psoriasis have been sunlight and enstillar foam. Almost to the point of complete repair.

It is important to note what flares things up for you, stress is a huge factor in severity of psoriasis, diet (red meat, dairy, sugar) also can really impact it.

Keep searching for those improvements and share your results.

Re: I had an autoimmune disease, then the disease had me (2013)

#90
post #32

Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?

I have had psoriasis all my life. I've managed it with prescribed topical corticosteroids.

I went on the Keto diet 3 weeks ago (just to lose some weight). A fantastic side effect is my psoriasis flare ups have started to diminish notably.

I also feel better in general, no fatigue. That can be attributable to being in better shape, but I think a lot of it is the brain fog that Meghan spoke about in her article. When your body stops attacking itself, you magically have much more energy :)

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