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Living Large

Emotional And Physical Damage

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Hello Everybody,

During my childhood, I experienced a great deal of pain. Never knew what it was. I took ballet when I was young and the tights cut into my stomach, causing even worse bloating and diarrhea. I was a very, very active child, but I always had somewhat of a protuding tummy. My mother tried to encourage me to lose weight from about age 7, and I had a lot of disappointments from that with a seeming inability to control my ever-growing stomach. The fact that she would phyiscally discipline me for not losing weight on schedule has caused a rift in our relationship that's still present today.

Some factors present early-on that I consider to be noteworthy:

> I would always have terrible muscle cramps, neck and calves. So bad sometimes that I could barely move.

> Going to the ER as a kid for such severe stomach pain that I couldn't move.

> Constantly craving vinegar (?) possibly

> Getting sick especially when there was a combo of starch and meat.

> Always having a swollen stomach.

> Having many skin problems.

As I reached my late teens/early 20s, the problem rapidly escalated. I reached 250 lbs (and I'm a 170 cm/5'7" female). I could barely move. My face and stomach were so swollen. I went to several doctors and they told me to stop being so lazy. But I had actually been getting a good bit of exercise when I could manage to move.

Anyway, I started cutting out all glutens ten months ago. I've lost 100 lbs. I'm about to turn 22 now, and I'm still dealing with the aftereffects, both the emotional and physical toll it's taken. Celiacs has damaged relationships and my body. Sometimes I can barely bear to look at myself with all the scars, and I'm barely out of my teens. My neck is killing me and has been for the last few weeks. My stomach is swollen, and I got my first hemmorhoid.

Last night, I broke down and sobbed like a baby. I felt so sick and so tired.

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I am so sorry you have suffered so much. It's OK to cry. It's wonderful that you have lost 100 lbs.! You will get better; stick with it. Have you seen a dietician? And/or a therapist for help with your emotional pain? You are young and have your whole life ahead of you, and you are on a good road now. I am glad you found us; people here can offer help and advice with any questions you might have about the diet.

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So, so sorry to hear about your emotional and physical trauma. This community has been a wonderfully supportive and educational resource for me and hopefully for you too. Hey, look, now that you know how to manage your condition, you have a whole life ahead of you to live with gusto!

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Hey sista Living Large, welcome to the forum!

Look forward to better times. You may experience some bumps along the road to better health, but you won't ever be in those dark places you endured before. Welcome to a brighter side of life.

The issues with your mom are rough. I hope you can work through them. Somtimes it helps to write a letter. You don't necessarily have to send it. (You can burn it if you prefer :D ) Burn it and stomp on it or burn it and watch the wind carry away the ashes and let that be gone and focus on what is important now.

I promise you that things will get better for you. You'll feel better, your weight will drop off, you'll feel better mentally, be able to sleep better and get a little exercise in. Meantime, you'll be busy getting all of the gluten out of your household and planning meals. That's what's most important now.

I do wish you well. I wonder if you got the gene(s) from her or your father?

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I agree it is pretty horrible to grow up being misunderstood by one's family and especially one's mother due to this dreadfully misunderstood and often not diagnosed condition. I have had some similar experiences. You can overcome not only the physical pain, but also the emotional and psychic pain and become the powerful woman you are meant to be. You finally had the guts to go your own way, and look at what progress you already have made! Now that you know what you are up against at least in part, it means life does not have to remain dreadful. Already you have lost a great deal of weight.

It sounds like you are still suffering however. Its very possible the pain you feel is due to cross contamination from gluten--from old cutting boards, toasters, iron pots and pans that haven't gone through the self cleaning oven cycle, soaps, shampoos, lipstick etc.

Its also possible you may have other additional things you are sensitive to. Sugar is commonly a problem since its not that good for anyone. It can contribute to candida overgrowth just for starters. If that seems like it might be a problem you have, you may discover being on a low carb diet for a while would help you a great deal. Many find that going on a paleo diet for a while or a specific carbohydrate diet can really help, especially for fibromyalgia like symptoms. For others they go on perhaps a less radical yet still very effective diet, and eat cooked brown rice, vegetables and meat. Period. To allow their body to heal.

Taking nattokinase meanwhile can help heal the scar tissue of the intestinal villi. Enterically coated acidophilus can help correct your intestinal flora. Digestive enzymes can help a great deal, especially pancreatin (at least at first) when you eat protein. Avoiding milk is often a must at first, except for plain organic yogurt.

I also suggest you take gluten free co-enzyme B vitamins by either NOW or Country Life. They are much more absorpable than regular B vitamins--and yes the b's are essential to have even keeled emotions, as well as nerves and all kinds of other functions, including digesting starches and proteins effectively.

Minerals too are essential. If you are even a little like I was (which it definitely sounds like you are) you probably don't absorb minerals that well. Thus take minerals at least twice a day--like calcium, mag., zinc plus colloidal trace minerals and silicon drops to improve your connective tissues, cartilage and bones--all of which may very well not be doing well due to not getting the appropriate nutrients since your absorption was likely very lacking during most of your formative years.

I would suggest you read as much as you can about this condition which is often at the root of a variety of other disorders. I think Braly and Hoggan's book DANGEROUS GRAINS is particularly informative.

For myself I found I also have to avoid foods high in salicylic acid--which is a whole other topic, yet can complement celiac or severe gluten intolerance. Think ADHD or ADD like symptoms, as well as fibro and arthritus, stomach and intestinal complaints, rashes, not to speak of depression and mental disturbances, obsessions etc.

Further with the gluten intolerance etc., other allergies or food sensitivities are often likely. So be aware. The simpler the diet and the closer to what our ancient forbears ate, the better, at least at first. Its OK to splurge on gluten free chocolate chip cookies now and then (assuming it does not wreck you), but for now it may be best to not make a practice out of it. Caffeine of any kind (and chocolate does have caffeine) plus sugar can make a body go spinning, especially if you are still recovering your health.

Meanwhile, yes I agree, getting some good therapy could help you a great deal, as it has for me. If you don't have much money, I suggest you look into re-evaluation co-counseling. You can't just look it up in the yellow pages, however there is some info online which if you nose around and do emails will eventually lead you to a local group. Co counseling is mainly known through word of mouth. They have a very low profile, yet are quite effective dealing with emotional issues, as long as you are also present enough to listen to someone else and thus have equal time. And low cost!

Or take some psych classes or be a guinea pig for young psych majors at the local university clinic. You could do the same for hypnotherapy. If there is a school nearby you could volunteer to be a subject. Or study these subjects yourself. The effect of which could be very helpful for recovering your self esteem and losing the emotional pain.

Writing, music or visual art (i.e., being creative) can also be a great godsend.

Joining or starting a local celiac support group can also help a great deal.

Good luck, and thanks for sharing. And please let us know how your progress goes...

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Sometimes it can take a long time to get over the emotional damage that we are left with from being ill for so long and being discounted by doctors and family. There are a lot of us who have struggled like you for years and years being told we were lazy when we barely had the energy to breathe let alone get every thing done that most folks do with ease. Many of us have dealt with doctors telling us everything is 'in our heads' or even that 'we want to be sick'. It does leave scars that can take a long time to fade.

If you can find a good counselor that can help. Mine helped me a great deal but it can be hard to find a good one. I did have to switch a couple of times before I found one that I could really talk to. Some places have a sliding fee scale if you don't have insurance or if you can't afford a high copay. I stopped going when my insurance ran out but when I told them why I wasn't coming any longer they had someone call me from the billing office and they cut my fees from $140 a visit to $8. It doesn't hurt to ask if something is available through a clinic or hospital in your area.

If at some point your Mom will go to a visit or two with you that may help your relationship by having someone medical open her eyes to the fact that you were ill not lazy.

Do be strict with the diet and if you are still having issues do look into possible other intolerances with the most common being soy and dairy.

This is a very supportive group and if you have any questions do feel free to ask. We are also here if you just need to vent. There are many of us here with similiar stories and we do understand how you are feeling. Your not alone in your struggles.

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Thanks everybody for the encouragement. As I'm living in a foreign country now, it's difficult to keep up with everything exactly. I have found that I'm sensitive to legumes, lactose (except when cooked in things), and caffeine.

Another issue: anyone have any tips on how to deal with blotchy skin that flares up from time to time? I have a feeling that this is yet another aspect of my fight with Celiac Disease.

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Thanks everybody for the encouragement. As I'm living in a foreign country now, it's difficult to keep up with everything exactly. I have found that I'm sensitive to legumes, lactose (except when cooked in things), and caffeine.

Another issue: anyone have any tips on how to deal with blotchy skin that flares up from time to time? I have a feeling that this is yet another aspect of my fight with Celiac Disease.

Wow--that's adventurous. What country?

Quite likely the blotchiness is yet another sensitivity/intolerance. I would eat very simply and keep a food journal to get some clues. Suspect everything. Look up food and chemical intolerances online. Sue Dengate is a good resource.

If you can, take baths with epsom salts to help detox. It is good for the skin as well as the rest of you. You can also look it up online and make your own epsom salt skin cream etc. Or just mist yourself with a solution of it or make hot foot baths with it (i.e., epsom salts with hot water).

Start slow with the amount in case you react due to heavy detoxing. I found it hard to believe, but its true. One time I got a horrendous headache and nausea using too much epsom salts, especially at first.

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Wow--that's adventurous. What country?

I've lived in Korea for about five months now. I've heard that all the vinegar in kimchi is good for helping fight skin problems that surfaced as a side effect of gluten allergies. And thanks for the salt detox suggestion, I'll definitely try that.

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I've lived in Korea for about five months now. I've heard that all the vinegar in kimchi is good for helping fight skin problems that surfaced as a side effect of gluten allergies. And thanks for the salt detox suggestion, I'll definitely try that.

I have two friends living in Japan teaching English. Wish they were someplace like Korea instead given all the radiation these days.

Shows you have a bit of gumption to live overseas in a completely different culture like that. Are you by yourself? Seems you have been going through major transformations this last 6 months, eh? Give yourself a break. Of course you feel a bit emotional now and then. Its only human. Being over there I would think its even more important for you to grow your own support system if that is at all possible.

By the way, the vinegar may or may not be good for you. You should check to make sure its completely gluten-free. Try going without and then try with and see if it makes a difference or not. I am assuming its made from fermented rice?? Or is it cabbage?? I'm showing my ignorance of Kim chi and the like...

For myself I seem to not tolerate anything fermented except plain organic yogurt. It seems to be related to being "phenol" sensitive--something I am just learning about. Like many of these things, it can affect the skin. Fortunately there are products out there called Phenol Assist, or No Fenol etc. that help counteract the effect, by helping one better digest phenols...

I just started using a phenol remedy 4 days ago. Theoretically it should kick in by Sat. Already I can now eat cooked bananas and apples, whereas before I tolerated no fruit at all. It gave me the most annoying rash/eczema/flaking/itching you can imagine. I look forward to finding out if it will help me tolerate more fermented foods too or not.

Glad to hear you are going to try the epsom salts. I generally use mine at night since they tend to make me sleepy afterwards--which for me is good since I have historically had great difficulty sleeping well at night.

Good luck to you again!

Bea

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