7 Weeks Free, Ups And Downs.

[zanzares]

I've been gluten/dairy free since late March, and during that time I've had 2 setbacks. First a short medical history and how I went gluten free, then the problems.

I caught dengue in the tropics in Aug 05, took a month to recover and was left with a persistent pain in my upper right abdomen that refused to go away.

New Years Eve '05, I first felt a strange sensation in my chest, and within a week I had full blown mono, which I would finally discover when tested for it in March. The mono lasted into late May, early June.

July 06 - Sept 06 I'm somewhat healthy and start freelance web design/development. By early October I've had a distinct shift in personality, I've quit working, walked out on a client without delivering, avoid email and anything that will stress me out. By the end of the month I've developed gluten ataxia, and having difficulty breathing, mental fog, vision problems, anxiety, nervousness, night terrors, irrational fear, etc...

November was spent visiting doctors to no avail, until mid December when I decided to quit drinking so much soda/caffeine.

The majority of the symptoms went away within a day, but all came rushing back on Christmas Eve during some stressful conversations.

January through March 07 were less eventful than the past few months and most of the psychological symptoms had gone, the ataxia was now the major issue. During this time I began watching House MD from the start of season one, and finally ran across the episode featuring gluten sensitivity with neuropathology. While not identical to my symptoms, it put me on the right track in researching it, and I made the decision to try gluten free for 2 weeks to see what would happen.

To my surprise, within a day I was feeling much better, the shaking had ceased completely, and my diarrhea went away to be replaced by a normal stool 3 days later.

I stuck to the diet, and went to see a GI doc the next week, which is when I had my first setback. He claimed that celiac/gluten sensitivity was very rare, and a European problem. He was certain I had giardia or some other parasite, and I figure I should at least give him the benefit of the doubt. At this point I was still unaware of gluten ataxia and the direct neurological and psychological effects.

Around April 6th, I went into anaphylaxis after taking the antiparisitic. For treatment in the ER, they gave me adrenaline, which set off my gluten ataxia symptoms of uncontrolled muscle movement. Also, for the next three weeks I would continually develop a rash and also had a week of bad nasal allergies. I think my histamines just got wound up, but all that settled by the end of April.

Throughout this, I stuck to the gluten free diet, but the histamines acting up caused me to feel stuffy, and run down, so progress was hard to determine.

In late April, I did a self administered gluten challenge (since I have no luck with doctors), and was symptomatic 2 days later, with symptoms lasting 5 days after onset. All the symptoms came back with a vengeance, and this is my conclusive diagnosis. Once I start work and can afford it, I will definitely do an EnteroLab test to get an official confirmation.

Fast forward to this week, I'm feeling pretty good, taking all my vitamins, probitiocs, L-Glutamine, etc... But this morning, I got super stressed out/upset over a matter, went back to bed, woke up at 1pm (I'm sleeping 12-13 hours a night), was feeling off, and then around 4 I started having symptoms, shaking, anxiety, inability to focus, etc... Pretty much everything.

I know for a fact I didn't have any gluten exposure, so my questions are thus:

Can stress trigger gluten-like symptoms during recovery? I'm assuming yes, since the anti-antibodies are still circulating about, and any stress while i was undiagnosed led to more severe symptoms.

Are ups and downs during recovery to be expected? Some days I'm full of energy, but if I try to use that energy, I'm wasted for the next 3 days. On other days I feel a bit unwell for no specific reason.

When can I realistically think about working? I'm hoping to be freelancing again, but it's a highly mental and somewhat stressful job, so is late June pushing it? Should I give my body longer to heal if I don't want to crash and burn?

Is sleeping 12 hours a night common? I tired getting on an 8 hour sleep schedule, but that was a disaster all the way around. I'm guessing my body needs the extra sleep to heal.

Tips or tricks to speed recovery? I'm open to suggestions.

Apologies for the long post, and thanks for any answers.

[AndreaB]

Your body has been through the wringer and it's not surprising that you would need more rest to begin with.

Stress can cause many problems, but there could also be other things going on. If you don't start feeling better 6 months or so down the road then I would suggest you see a naturopath/holistic doctor or a LLMD (they test for many, many things...not just lyme). With some of the symptoms you mentioned you had before going gluten free you may want to see a LLMD sooner rather than later. Gluten could be causing the problem, but so could a host of other things. Have all the things you metnioned in July 06 cleared up?

For enterolab, I'd suggest the gene test if you can't afford the whole package deal. The genes will tell you whether you have a celiac gene or a gluten sensitive gene.

You should be able to do some work. If you are still really tired and you have to deal with stressful situations and thus bring on these symptoms again you may want to start out with just a few jobs. I don't know what to suggest to keep the stress level down.

Sounds like you are doing what you can to heal but further testing when you can afford it would probably be a good idea. Do you have any other intolerances that you know about. Sometimes they creep up to be noticed after gluten is removed from the diet.

Have you checked all your personal care products?

[Kaycee]

Yes ups and downs are to expected. I showed marked improvement within a couple of weeks of going gluten free, but then after that I had setbacks and it was quite hard on me emotionally. But by nine months, I was pretty much settled health wise. I do think stress does play a part in how you feel too. All of sudden I went from not being too bothered about what I ate, to being quite paranoid about everything that touched my lips.

I have been working right through. I have not been too tired, but I did cut down on my hours last year, but have added them back now and feel great. We are all different and you can only judge for yourself what is best for you. You could think of working in a less stressful job until you feel you can cope with the stresses of your chosen career a bit better. Or just take some time out for yourself. It is a big shock when you have health issues, and your emotions, feeling and well being needs to be considered.

Sleeping 12 hours a night seems quite long. I would love to do that, but I can't due to work and family commitments. Could you be a bit depressed as that could be a reason for needing the extra sleep, or else you are just so worn out with your body healing.

For a speedier recovery, you could possiblly stick to fresh fruit and veges, rice, eggs, fish, and meat. I also eat a gluten free bread and rice crackers or corn crackers. Some people have found that they are lactose intolerant and benefit by going lactose free to start with. I did this for a few months while in my up and down stage, but the thing that has made the biggest difference was the quality of food I was eating. The less prepared the better I felt. Try to eat only good healthy wholesome food. I know it takes more time to cook, but by doing this I have come to respect food, and have become more aware of what is put in our food, and I can't possibly believe some of the additives they use would do us any good. But by doing this it is easier to avoid possible glutening.

I know I'm having a good day when it is not an effort to strike up a conversation with the world as a whole. Today has been one of those days. They don't happen everyday, but they do happen. I feel alive and inspired.

Cathy

All the best, and hope you are feeling better soon.

[aikiducky]

I was sleeping almost that long in the beginning as well, it got better after a while. Don't know what to say about working, it's hard for anyone to know how your healing is going to go.

Pauliina

[Aunt Poppy]

You and I could be twins as far as symptoms go. I too have vision problems-the outside of my eye becomes blurry. I have myclonus (jerks of the hands, legs, diaphragm and one time the whole middle section of my body. I also have ataxia (trouble walking) sometimes. It is not bad, but it is sometimes there. Along with all of that is horrible anxiety attacks, weakness and generally feeling like heck sometimes. I was diagnosed with IBS and gluten sensitivity after a horrible intestinal upset due to too many antibiotics. Both of my doctors say that with Celiac or any other kind of severe inflamation of the colon, the nerve endings are extremely sensitive and once the intestines heal, the symptoms should go away. To heal, you need to be careful what you eat. No gluten of course, and things that have helped me are sticking with potato, rice, turkey, chicken (not processed), fish, all natural applesauce, green beans, canned spinich, banana (I eat a lot of these), baby food (some are not bad: Rice and applesauce for one. I know it sounds awful, but a delicate diet for a while can help with the healing. And be sure to take a mega vitamin, B Complex, and Calcium and Magnesium. The nutritionalist said that magnesium is a natural tranquilizer and after a couple of days I could really tell the difference. But don't overdo magnisium as it can give you diarrhea. Good luck. I know just how you feel.

quote name='zanzares' date='May 18 2007, 12:09 AM' post='304724']

I've been gluten/dairy free since late March, and during that time I've had 2 setbacks. First a short medical history and how I went gluten free, then the problems.

I caught dengue in the tropics in Aug 05, took a month to recover and was left with a persistent pain in my upper right abdomen that refused to go away.

New Years Eve '05, I first felt a strange sensation in my chest, and within a week I had full blown mono, which I would finally discover when tested for it in March. The mono lasted into late May, early June.

July 06 - Sept 06 I'm somewhat healthy and start freelance web design/development. By early October I've had a distinct shift in personality, I've quit working, walked out on a client without delivering, avoid email and anything that will stress me out. By the end of the month I've developed gluten ataxia, and having difficulty breathing, mental fog, vision problems, anxiety, nervousness, night terrors, irrational fear, etc...

November was spent visiting doctors to no avail, until mid December when I decided to quit drinking so much soda/caffeine.

The majority of the symptoms went away within a day, but all came rushing back on Christmas Eve during some stressful conversations.

January through March 07 were less eventful than the past few months and most of the psychological symptoms had gone, the ataxia was now the major issue. During this time I began watching House MD from the start of season one, and finally ran across the episode featuring gluten sensitivity with neuropathology. While not identical to my symptoms, it put me on the right track in researching it, and I made the decision to try gluten free for 2 weeks to see what would happen.

To my surprise, within a day I was feeling much better, the shaking had ceased completely, and my diarrhea went away to be replaced by a normal stool 3 days later.

I stuck to the diet, and went to see a GI doc the next week, which is when I had my first setback. He claimed that celiac/gluten sensitivity was very rare, and a European problem. He was certain I had giardia or some other parasite, and I figure I should at least give him the benefit of the doubt. At this point I was still unaware of gluten ataxia and the direct neurological and psychological effects.

Around April 6th, I went into anaphylaxis after taking the antiparisitic. For treatment in the ER, they gave me adrenaline, which set off my gluten ataxia symptoms of uncontrolled muscle movement. Also, for the next three weeks I would continually develop a rash and also had a week of bad nasal allergies. I think my histamines just got wound up, but all that settled by the end of April.

Throughout this, I stuck to the gluten free diet, but the histamines acting up caused me to feel stuffy, and run down, so progress was hard to determine.

In late April, I did a self administered gluten challenge (since I have no luck with doctors), and was symptomatic 2 days later, with symptoms lasting 5 days after onset. All the symptoms came back with a vengeance, and this is my conclusive diagnosis. Once I start work and can afford it, I will definitely do an EnteroLab test to get an official confirmation.

Fast forward to this week, I'm feeling pretty good, taking all my vitamins, probitiocs, L-Glutamine, etc... But this morning, I got super stressed out/upset over a matter, went back to bed, woke up at 1pm (I'm sleeping 12-13 hours a night), was feeling off, and then around 4 I started having symptoms, shaking, anxiety, inability to focus, etc... Pretty much everything.

I know for a fact I didn't have any gluten exposure, so my questions are thus:

Can stress trigger gluten-like symptoms during recovery? I'm assuming yes, since the anti-antibodies are still circulating about, and any stress while i was undiagnosed led to more severe symptoms.

Are ups and downs during recovery to be expected? Some days I'm full of energy, but if I try to use that energy, I'm wasted for the next 3 days. On other days I feel a bit unwell for no specific reason.

When can I realistically think about working? I'm hoping to be freelancing again, but it's a highly mental and somewhat stressful job, so is late June pushing it? Should I give my body longer to heal if I don't want to crash and burn?

Is sleeping 12 hours a night common? I tired getting on an 8 hour sleep schedule, but that was a disaster all the way around. I'm guessing my body needs the extra sleep to heal.

Tips or tricks to speed recovery? I'm open to suggestions.

Apologies for the long post, and thanks for any answers.