My mother's autoimmune condition

[mada85]

I'm writing this post to describe my mother's condition and to ask for any advice or recommendations that may help her. My mother is 81.

She saw a consultant yesterday and he was (in her estimation) 99% certain that she has an autoimmune condition known as ocular cicatricial pemphigoid. The consultant wants to perform a biopsy to confirm the diagnosis but this will not be done for at least a couple of months. We don't know from which area of the body the biopsy will be taken, although she says that he was reluctant to do this as it might worsen the condition. Her eyes are quite badly affected. The consultant thinks there's a high probability that she will lose her sight completely. Her sight has been deteriorating for several years. She had a cataract removed last year.

I found the following items describing this condition.

http://emedicine.medscape.com/article/1191261-overview

Ocular cicatricial pemphigoid (OCP) is one of the subsets of mucous membrane pemphigoid (MMP), a group of systemic autoimmune diseases characterized by T-lymphocyte dysregulation, the production of circulating autoantibodies directed against a variety of adhesion molecules in the hemidesmosome-epithelial membrane complex, and the production of proinflammatory cytokines and immune system activation markers. OCP can affect the skin and other mucous membranes (eg, oral mucosa, pharynx, larynx, trachea, esophagus, vagina, urethra, anus), in addition to its hallmark feature, chronic cicatrizing conjunctivitis.

And this, from: http://www.patient.co.uk/doctor/Cicatricial-Pemphigoid-%28CG%29.htm

Eyes:

This may start with conjunctivitis and grittiness of the eye.
Dry eyes may result from lacrimal gland involvement.
Ocular involvement can lead to blindness because of inflammation and scarring involving the lens, cornea,[8] iris and globe.
Some patients with CP have only eye involvement

In addition to the above symptoms she also has ingrowing eyelashes, some of which were removed by laser treatment yesterday.

We had a long talk this evening. I stressed that the first order of business is to reduce the inflammation and I've recommended she reads Hyman's book The Ultramind Solution. She has a copy. In the past she has always relied on 'experts' to help with her health, which really equates to giving away her power and responsibility. I think that taking back one's responsibility for one's health actually affects the immune system in a positive way, and is a definite first step towards healing. She is very nervous of taking this responsibility for herself. For over a year she was seeing a kinesiologist to determine what supplements she should take, with no success whatsoever.

I explained how the elimination diet works and that after a few weeks one can then reintroduce certain foods one by one and observe reactions, and these observations should be recorded in a food diary. She's open to doing this, but will need support and encouragement from me as she won't get much, if any, support from my father who has no conception of the importance of diet. He makes his own bread and eats it until it's coming out of his ears, but that's another story.

She does not want to change to a LCHF diet. She's almost completely gluten-free but does like cakes and biscuits from time to time. I've urged her to completely eliminate gluten.

Knowing that many forum members have dealt with autoimmune conditions with great success, any advice or insights would be most welcome.

 

[Laura]

Knowing that many forum members have dealt with autoimmune conditions with great success, any advice or insights would be most welcome.

The only thing that could really have an effect at this point is TOTAL elimination of gluten and dairy, grains and nightshades, and a LCHF diet.

If she is really tired of being sick or scared of losing her sight, and realizes the doctor isn't getting her there, she'll change. Otherwise, you are spitting into a hurricane. As much as you want to help, you know the drill: you can lead a horse to water...

 

[mada85]

If she is really tired of being sick or scared of losing her sight, and realizes the doctor isn't getting her there, she'll change. Otherwise, you are spitting into a hurricane. As much as you want to help, you know the drill: you can lead a horse to water...

You're absolutely right, Laura, and it's really painful to acknowledge. Perhaps one day, she might be so tired of fighting a losing battle that she will consider real change. It's really heartbreaking and I guess I'm hanging on to a bit of hope. But as you say, if the horse won't drink . . .

 

[LQB]

In my own case with my mother, we had many long talks about diet, findings on the forum, and many folk's experience. She did finally go gluten/dairy free and then keto. This was motivated by her great desire not to lose anymore mobility/balance walking ability. After a lot of reading on the subject, we both agreed that she probably succumbed to gluten-ataxia very slowly over the years.

It is hard to watch and I know how you probably feel.

 

[Tomiro]

I'm not sure that I can add anything than what Laura said. But it is quite heartbreaking watching the health of people close to you deteriorate, and diet seems to be one of the hardest things for people to change. Not only is there the addiction to carbs and grains, but then there is the social aspect, where people don't want to "stand out", or be different when eating with other people. In my experience the situation often have to become bad enough, and they've tried just about everything else for them to be willing to change what they eat.

My own grandmother is about the same age as your mother, with rapidly failing health, memory problems etc. She barely eats anything, and most of it is carbs and grains. I've given up on informing her about the diet, since she firmly believes everything the doctor's tell her, including low fat, statins and so on.

My ex. again struggled with depression and a severe case of Atopic dermatitis among other things, but only after years of suffering (after I've suggested that she might try and change the diet) was she reluctantly willing to try it, and within a few month her mood improved, she had more energy, and her skin was completely healed. My brother is in a similar situation as she was in, but I don't see him changing diet any time soon.

Maybe some supplements could also help your mother? In my own case of chronic inflammation, before going keto, I noticed a significant improvement of my health, just by completely eliminating gluten, and doing some detoxing.

 

[mada85]

I had another talk with my mother this evening. She has realized that this is her last chance. She's been reading Hyman's book and is going to follow the elimination diet. I was pleasantly surprised by her determination.

The biopsy is scheduled for December 11. The samples will be taken from the white of the eye, which is rather concerning, and from the mouth. She's uncertain how to handle the consultant. Does she tell him she's addressing the condition through diet? Or does she keep silent and see what medications he wants her to take? As we all know, the vast majority of consultants and doctors don't have a clue about the importance of diet.

The only thing that could really have an effect at this point is TOTAL elimination of gluten and dairy, grains and nightshades, and a LCHF diet.

I told her exactly what Laura wrote above, word for word, and she considered this. She's been a vegetarian for nearly 40 years so the thought of eating an all-meat and high fat diet is still somewhat challenging for her. She was more open to considering the LCHF diet though. But she does want to do the elimination diet first.

In my own case with my mother, we had many long talks about diet, findings on the forum, and many folk's experience. She did finally go gluten/dairy free and then keto. This was motivated by her great desire not to lose anymore mobility/balance walking ability. After a lot of reading on the subject, we both agreed that she probably succumbed to gluten-ataxia very slowly over the years.

How old was your mother when she transitioned to a keto diet? What effects did it have?

But it is quite heartbreaking watching the health of people close to you deteriorate, and diet seems to be one of the hardest things for people to change.

Indeed. What people like to eat is almost like their religion! I'm hoping that she will notice some improvement with Hyman's method, and then will be ready to go keto. Time will tell of course. As I mentioned in my first post, she won't get much, if any, support from my father, but I'm hoping she will be able to ignore that.

 

[SeekinTruth]

Sorry to hear about your mom, Endymion. Just want to add to the support and tell you I know somewhat how you feel, as I've seen many people deteriorate (and a few die) because they didn't want to try certain things, including diet changes, and just listened to their doctors and the mainstream medical and dietary guidelines. After a while, I just stopped being so emotionally effected by it. I give information where appropriate, and let people make their own decisions and learn their own lessons (including others around the person in question, such as family).

I'm glad your mom is seriously considering the dietary changes and is ready to start the elimination diet. As you asked LQB about when his mother transitioned to a keto diet (at what age), I thought I'd give you my experience, as well. When I came back from PF in 2010, for some reason, both my parents and my brother who was living with his girlfriend wanted to do the elimination diet starting with the "ultra simple diet" to eliminate things that caused problems one by one. They eliminated wheat and dairy right away. I had done this around 8 or 10 months prior (even before that I had stopped eating ANY processed wheat flour and the like, and stopped table sugar and sweets in general, and had began eating lots of organ meats because of a health issue a few years earlier which I got over by reducing refined carbs drastically, and taking some specific supplements - in addition to the eating of lots of organ meats). I had done all this starting in the second half of 2006. Also, although I was never much of an alcohol consumer, I completely stopped having even a drop of alcohol because it seemed to make for a quick relapse in the early part of my illness (prostatitis, recurring urinary tract infections with high fever), especially the (very seldom) consumption of a beer (which has gluten too) or two a couple of times a year.

So, I'm not exactly sure what prompted them to want to make the dietary changes (at that particular time that I had made earlier; probably because I was a bit more excited about trying out new recipes, etc. and something must have been "brewing" in the back of their minds about how I had completely overcome my own health issues by diet and supplements alone. Also my father had had prostate problems for over 10 years (enlarged prostate) and had an acute flareup a month or two before my acute prostate problems began. So I had done the research for my father and applied the info to myself. He changed diet and took supplements for 6 months, but was able to urinate without a catheter within a couple of weeks of starting.

Anyway, after the ultra simple diet for a few weeks they became more interested as I was starting to transition to an almost all meat, high fat diet (the early stages of the keto transition) in early 2011. They wanted me to cook them bacon (or sausages) and eggs every morning as I was cooking for myself, and eating more animal fat including butter/ghee. So my mother transitioned to a ketogenic diet a few weeks after I did in March of 2011 which would make her 67 years old (her birthday is in October). She had many chronic health problems already for around 25 years, including atrial firbilation / irregular / racing heart and high blood pressure. These vastly improved within a few weeks and she greatly reduced the drugs she was taking for them. Also, she started to sleep better and had more energy even if she didn't sleep enough.

She's been in ketosis ever since and is doing well. She did have iron overload with very high ferritin (332.6 ng/ml) that she got under control in the last half year by decanting blood and doing several courses of EDTA chelation. I'd say if your mom tries to transition to the ketogenic diet after elimination of grains and dairy, she should go slow and give herself a couple of months to adapt.

The moral of the story, from my perspective, is that the likelihood of why they wanted to change their diets was because of seeing the example set for a couple of years in my own health improvements, as well as my father's acute prostate issues resolving enough in a couple of weeks to urinate without a catheter a few years earlier from when they decided to change their diets to be similar to mine - although my father didn't have the pain and high fever I had, but he may still have had prostatitis besides "benign" prostate enlargement too. From the research I had done, it said that prostate enlargement was expected in more than 50% of men over the age of 40 (I was 39 when I started having the problem myself), and that older men could have prostatitis without fever or pain like younger ones would have as a symptom.

When my father had to give up white bread and pastries and pasta, etc. and sweets/refined sugars at the time of his acute prostate flareup , he REALLY was unhappy because these were his favorite foods besides cheese and meat of all kinds (never liked veggies much). So at least it was easy to get him to eat lots of organ meats during that time because he always liked them, and meat in general. And my brother was probably just curious to try it as an experiment and also to do it as a way of supporting my parents' decision. Hope this gives you some more useful information/examples.

Just to add that my whole family, including myself, used to eat a crazy amount of bread, pasta, pizza, pastries/cakes/cookies/sweets in general, cheese and other dairy, etc. I probably ate the most sweets out of all of them on top of the other evil stuff and got seriously sick by the age of 39. Now, on the ketogenic diet for close to three years, I've never felt better in my life in all ways - mentally and physically.

 

[LQB]

How old was your mother when she transitioned to a keto diet? What effects did it have?

She was about 80-81 y/o. Her transition to keto was much easier than mine. The main effect was not getting hungry for anything and eating far less volume. She lost a little weight and mobility remained about the same.

 

[mada85]

Thanks for your replies, SeekinTruth and LQB.

The good news is that she has pretty much decided to go paleo. I stressed that she must read about the paleo diet before starting any changes, and to that end I've just ordered for her a copy of Life Without Bread. She'll be reading 'The Art and Science...' and 'Primal Body' when she finishes LWB.

Laura, I think that your words made quite an impact on her and really got her to think about her options. Thank you.

 

[Meg]

I am sorry to hear about your mom, Endymion.

Her decision to go paleo is heartening and good news. I wonder if some bone broth made with fish eyes or some other animal eyes might be helpful?

I hope the biopsy goes well.

 

[SeekinTruth]

I am sorry to hear about your mom, Endymion.

Her decision to go paleo is heartening and good news. I wonder if some bone broth made with fish eyes or some other animal eyes might be helpful?

I hope the biopsy goes well.

There was some information about the benefits of eating fish eyes (in fish broth and in general) either here on the forum (LWB threa?) or SOTT or both in the last couple of years, but can't seem to find it by searching. I also remember when I was a child, my father used to bring a sheep's head home and prepare and cook it - it was a very long process, if I remember correctly. Then every part would be eaten - tongue, eyes, cheeks, brain, etc. And it was very tender and tasty - all flesh would almost be falling off. And there was also mention of this somewhere in 4th Way literature (can't remember where) about Gurdjieff making a whole "ceremony" preparing and cooking sheep's head.

ADDED: Hmm. Now I was able to find two posts in the Life Without Bread thread discussing the eating of eyes being good for eyes and eating of joints being good for joints when I did on last search....

https://cassiopaea.org/forum/index.php/topic,22916.msg284294.html#msg284294

https://cassiopaea.org/forum/index.php/topic,22916.msg284318.html#msg284318

 

[H-KQGE]

I am sorry to hear about your mom, Endymion.

Her decision to go paleo is heartening and good news. I wonder if some bone broth made with fish eyes or some other animal eyes might be helpful?

I hope the biopsy goes well.

There was some information about the benefits of eating fish eyes (in fish broth and in general) either here on the forum (LWB threa?) or SOTT or both in the last couple of years, but can't seem to find it by searching. I also remember when I was a child, my father used to bring a sheep's head home and prepare and cook it - it was a very long process, if I remember correctly. Then every part would be eaten - tongue, eyes, cheeks, brain, etc. And it was very tender and tasty - all flesh would almost be falling off. And there was also mention of this somewhere in 4th Way literature (can't remember where) about Gurdjieff making a whole "ceremony" preparing and cooking sheep's head.

ADDED: Hmm. Now I was able to find two posts in the Life Without Bread thread discussing the eating of eyes being good for eyes and eating of joints being good for joints when I did on last search....

https://cassiopaea.org/forum/index.php/topic,22916.msg284294.html#msg284294

https://cassiopaea.org/forum/index.php/topic,22916.msg284318.html#msg284318

Thanks for those links, the fish head soup was one of those things I'd forgotten about (probably because the thought grossed me out a bit) & a few others. This has coincided nicely with finding a better butcher & getting a handle on my gut issues. Next up (back to) salty water & potassium, & liver paté!

And I'm pleased to hear of your mother's dietary changes Endimyon, it's just more proof that no matter what age, diet is the "first port of call."