When Do I Worry?

[grey]

I was diagnosed with Celiac by tTG and biopsy on 5/23 and I've been gluten-free since.

My gastro. was terrible (see my vent in the doctor thread); and I'm trying to find a new one. The UChicago md I made an appt w/ had 1st appt in late Sept. (I am having vit. D, folate, and b6 tested now) I find myself really anxious about the fact that I don't have a good doctor who knows celiac to talk to and that I don't know if all my symptoms are celiac or something else.

I wasn't worried before, but then I didn't know I was losing weight because of severe malabsorption problems! I thought it was a side effect of my migraine medicine.So, when do I start to worry? I've now lost another 7 lbs in the past 2 weeks, almost 50 since October. How much is too much or too fast? Would a good doctor care about this at some point? Since I can't eat certain things bec. of GERD, gluten-free, & migraine, it's hard. No hunger yet either. Or do they only care if you weigh 85 lbs? Not about *your* BMI/frame?

I'm amenorrheic (no menstruation) and have been for months - is this celiac?

When do I worry about still having D?

Should I be concerned that after three days of energy, my fatigue came back really badly, and is hitting very hard? I have huge circles under my eyes. I'm falling asleep if I sit down in a waiting room for a minute, or to brush my teeth.

My neurological symptoms (I have most of the standard ones) haven't changed, which I expected would take a while, but do I just live with them and how long is normal?

I've always drank a lot of water, but since I went gluten-free, I'm very very thirsty - I've gone up to a gallon and a half of liquid (water, hot tea) of liquid.

After yoga, everything hurt much much worse than usual. I'm so sore - and I itch (I don't have DH).

Is it ok just to wait until September to see a celiac md? Will everything just be fine? I hate being ignorant and scared.

(btw, can you tell I also suffer from anxiety )

-grey

[SunnyDyRain]

I was diagnosed with Celiac by tTG and biopsy on 5/23 and I've been gluten-free since.

My gastro. was terrible (see my vent in the doctor thread); and I'm trying to find a new one. The UChicago md I made an appt w/ had 1st appt in late Sept. (I am having vit. D, folate, and b6 tested now) I find myself really anxious about the fact that I don't have a good doctor who knows celiac to talk to and that I don't know if all my symptoms are celiac or something else.

I wasn't worried before, but then I didn't know I was losing weight because of severe malabsorption problems! I thought it was a side effect of my migraine medicine.So, when do I start to worry? I've now lost another 7 lbs in the past 2 weeks, almost 50 since October. How much is too much or too fast? Would a good doctor care about this at some point? Since I can't eat certain things bec. of GERD, gluten-free, & migraine, it's hard. No hunger yet either. Or do they only care if you weigh 85 lbs? Not about *your* BMI/frame?

I'm amenorrheic (no menstruation) and have been for months - is this celiac?

When do I worry about still having D?

Should I be concerned that after three days of energy, my fatigue came back really badly, and is hitting very hard? I have huge circles under my eyes. I'm falling asleep if I sit down in a waiting room for a minute, or to brush my teeth.

My neurological symptoms (I have most of the standard ones) haven't changed, which I expected would take a while, but do I just live with them and how long is normal?

I've always drank a lot of water, but since I went gluten-free, I'm very very thirsty - I've gone up to a gallon and a half of liquid (water, hot tea) of liquid.

After yoga, everything hurt much much worse than usual. I'm so sore - and I itch (I don't have DH).

Is it ok just to wait until September to see a celiac md? Will everything just be fine? I hate being ignorant and scared.

(btw, can you tell I also suffer from anxiety )

-grey

Have you tried cutting dairy out also?

When I went Gluten free and for a bout a week and a half i felt better, but then i went right back... Dairy.

September is a long time to wait, I'd call and see if you can talk them into a closer apptment. I would be worried about the weight loss, that much that quickly is just bad.

[grey]

Thanks- I got rid of milk, but I haven't been searching it out of product/recipes like I have gluten. I'll have to try that; sadly I think it means the breads I have will have to go, and cheese was a major protein source.

Im not trying to lose weight like this; it's just been happening. (Certainly not the way my weight normally used to work!!) It seems too quick to me too, but the GI and PCP didn't seem to think it mattered because I wasn't that skinny.

Have you tried cutting dairy out also?

When I went Gluten free and for a bout a week and a half i felt better, but then i went right back... Dairy.

September is a long time to wait, I'd call and see if you can talk them into a closer apptment. I would be worried about the weight loss, that much that quickly is just bad.

[ravenwoodglass]

I was diagnosed with Celiac by tTG and biopsy on 5/23 and I've been gluten-free since.

My gastro. was terrible (see my vent in the doctor thread); and I'm trying to find a new one. The UChicago md I made an appt w/ had 1st appt in late Sept. (I am having vit. D, folate, and b6 tested now) I find myself really anxious about the fact that I don't have a good doctor who knows celiac to talk to and that I don't know if all my symptoms are celiac or something else.

I wasn't worried before, but then I didn't know I was losing weight because of severe malabsorption problems! I thought it was a side effect of my migraine medicine.So, when do I start to worry? I've now lost another 7 lbs in the past 2 weeks, almost 50 since October. How much is too much or too fast? Would a good doctor care about this at some point? Since I can't eat certain things bec. of GERD, gluten-free, & migraine, it's hard. No hunger yet either. Or do they only care if you weigh 85 lbs? Not about *your* BMI/frame?

I'm amenorrheic (no menstruation) and have been for months - is this celiac?

When do I worry about still having D?

Should I be concerned that after three days of energy, my fatigue came back really badly, and is hitting very hard? I have huge circles under my eyes. I'm falling asleep if I sit down in a waiting room for a minute, or to brush my teeth.

My neurological symptoms (I have most of the standard ones) haven't changed, which I expected would take a while, but do I just live with them and how long is normal?

I've always drank a lot of water, but since I went gluten-free, I'm very very thirsty - I've gone up to a gallon and a half of liquid (water, hot tea) of liquid.

After yoga, everything hurt much much worse than usual. I'm so sore - and I itch (I don't have DH).

Is it ok just to wait until September to see a celiac md? Will everything just be fine? I hate being ignorant and scared.

(btw, can you tell I also suffer from anxiety )

-grey

Hi, You haven't been on the diet for very long and things can be up and down for a bit. A couple questions for you. Have you been eating out? Have you deglutened your kitchen? Are you consuming a lot of gluten-free carbs? Have you eliminated gluten from all your toiletries and cosmetics? Have you had your scripts and OTC meds checked? There are no gluten labeling regs on meds, script or otherwise so you need to be diligent about checking these, generic drugs are very risky as they can change binders at any time. Are you eating a lot of mainstream 'gluten-free' processed foods? Many have serious CC issues, Frito Lay is really bad about that for example. Simple unprocessed foods are the way to go for the first few months.

Also check for gluten in any pets foods in your home and if you feed your pets gluten make sure you use a seperate can opener for their food and wash if you pet or are licked by your animal. We found it easiest to make our dog and cats gluten-free too.

One last thing diabetes and celiac are often found to coexist with us. The gluten-free specialty breads and stuff are generally very high in carbs. Kinnikinnic burger buns for example have almost a whole days carbs for me ( I am diabetic also). You should have your doctor check your sugar to be on the safe side.

I hope things get better soon but it does take a while. For me the sudden fatigue after feeling great for a few days would be an indication of glutening, may not be the case for you but you should evaluate what you ate for 3 days before the fatigue set in.

[dionnek]

First I'd make sure you are 100% gluten free - did you check your shampoo/conditioner/lipstick/lotion, etc.? New toaster, collander, wooden utensils/cutting boards? Any risk of CC? It took me 6 months gluten-free before I started feeling ANY better, and I'm still not 100% (I was in denial about dairy, but after a few months decided I needed to at least cut out the obvious cheese, milk, ice cream, etc. and that helped). You really haven't been gluten-free long enough to heal, however, since you are still loosing weight that would concern me. I'd also call back and try to get an earlier appt. - that is a lot of weight to loose! Good luck and keep reading - this is the best place for information. There are so many helpful people.

[debmidge]

Grey: where are you located? There are a few major university hospitals around country (USA) which have Celiac knowledgeable gastros (Calif, NY, Maryland, Illinois). Perhaps if contacting those physicians you can get a referral for a doctor in your area.....

[grey]

I'm in WI and I'm trying to get into the Celiac Center at the Univ of Chicago (about 1.5 h away); 1st appt is the one in Sept. They said they didn't know any doctors in Wisconsin ... I went to a WI support group meeting, and the general consensus seemed to be that going to Chicago was my best bet.

I haven't been eating much processed food, and no restaurants yet at all. I didn't eat much processed to begin w/ - the chemicals and additives were migraine triggers - and I live alone so I'm pretty sure there's no cross-contamination in the kitchen. I've checked everything I can think of on lists on the web, but I should probably recheck it by calling the companies. The only processed foods I eat are gluten-free breads (whole foods) and creakers (EnerG), gluten-free Almond Milk, and organic peanut butter and fruit spread. Cutting out the daily is helping my stomach - less cramping, but I'm still this weird combo of jittery and exhauster.

I'm considering going to see a hematologist and an endocrinologist in the meantime, to have myself checked out for my b12deficiency and ferritin def. Also, I had been diagnosed with Pernicious Anemia, but with the celiac, noone seems quite sure. ANd the other regarding my thyroid and adrenal glands to make sure they're beahi

thanks,

grey

Grey: where are you located? There are a few major university hospitals around country (USA) which have Celiac knowledgeable gastros (Calif, NY, Maryland, Illinois). Perhaps if contacting those physicians you can get a referral for a doctor in your area.....

[little d]

I was diagnosed with Celiac by tTG and biopsy on 5/23 and I've been gluten-free since.

My gastro. was terrible (see my vent in the doctor thread); and I'm trying to find a new one. The UChicago md I made an appt w/ had 1st appt in late Sept. (I am having vit. D, folate, and b6 tested now) I find myself really anxious about the fact that I don't have a good doctor who knows celiac to talk to and that I don't know if all my symptoms are celiac or something else.

I wasn't worried before, but then I didn't know I was losing weight because of severe malabsorption problems! I thought it was a side effect of my migraine medicine.So, when do I start to worry? I've now lost another 7 lbs in the past 2 weeks, almost 50 since October. How much is too much or too fast? Would a good doctor care about this at some point? Since I can't eat certain things bec. of GERD, gluten-free, & migraine, it's hard. No hunger yet either. Or do they only care if you weigh 85 lbs? Not about *your* BMI/frame?

I'm amenorrheic (no menstruation) and have been for months - is this celiac?

When do I worry about still having D?

Should I be concerned that after three days of energy, my fatigue came back really badly, and is hitting very hard? I have huge circles under my eyes. I'm falling asleep if I sit down in a waiting room for a minute, or to brush my teeth.

My neurological symptoms (I have most of the standard ones) haven't changed, which I expected would take a while, but do I just live with them and how long is normal?

I've always drank a lot of water, but since I went gluten-free, I'm very very thirsty - I've gone up to a gallon and a half of liquid (water, hot tea) of liquid.

After yoga, everything hurt much much worse than usual. I'm so sore - and I itch (I don't have DH).

Is it ok just to wait until September to see a celiac md? Will everything just be fine? I hate being ignorant and scared.

(btw, can you tell I also suffer from anxiety )

-grey

I thank God that I am not this sick, this is why i sometimes wonder if I have any kind of intolerance or if its in my head, but I know it is not because I have all the symptoms not always consistant maybe 90% of the time, but they are defiantly there, vomiting I think is pretty much no present thank goodness I vomit very rarly.

donna

[ravenwoodglass]

I know this is not going to make me popular but here goes anyway. Ener-g crackers are great, however.... they follow the codex standards which for some of us is not really gluten-free. I used to eat a lot of them, every day. I stopped a couple of months ago. You may want to try dropping those for a couple of weeks and see if that makes any difference, it may not but it might be worth a shot. I now go with Kinnikinick for my baked goods. Many are totally grain free, including corn, and really very good. Their bread is the best I have tried.

[grey]

I thought the Ener-g crackers had too much of a consistency, they came in a package of gluten-free food so I didn't read their label as closely (bad me). I'll drop those for a while (can't hurt). I thought I was being so good!

I'm in WI so Kinnikinick I think is pretty easy to get. Is it brown rice bread then?

Why is it good to remove corn and other grains?

Thanks!

grey

I know this is not going to make me popular but here goes anyway. Ener-g crackers are great, however.... they follow the codex standards which for some of us is not really gluten-free. I used to eat a lot of them, every day. I stopped a couple of months ago. You may want to try dropping those for a couple of weeks and see if that makes any difference, it may not but it might be worth a shot. I now go with Kinnikinick for my baked goods. Many are totally grain free, including corn, and really very good. Their bread is the best I have tried.

[grey]

Donna,

It's funny, most people (especially my evil gastroent.) don't think I'm sick at all. I think that my system is just really wound up right now because of stress and the change to gluten-free. I was glad I had the biopsy or I'd be doubting it too becuase of the way symptoms flare with the intolerances. It's so confusing. It's hard to remember it's not all in our heads.

grey

I thank God that I am not this sick, this is why i sometimes wonder if I have any kind of intolerance or if its in my head, but I know it is not because I have all the symptoms not always consistant maybe 90% of the time, but they are defiantly there, vomiting I think is pretty much no present thank goodness I vomit very rarly.

donna

[ravenwoodglass]

I thought the Ener-g crackers had too much of a consistency, they came in a package of gluten-free food so I didn't read their label as closely (bad me). I'll drop those for a while (can't hurt). I thought I was being so good!

I'm in WI so Kinnikinick I think is pretty easy to get. Is it brown rice bread then?

Why is it good to remove corn and other grains?

Thanks!

grey

It is not really neccessary to remove all grains unless they are problematical for you. I eat the Italian Bread they make which is white rice, tapioca and potato based. It IMHO is as close to the 'real' thing as I have found. It has a nice texture similar to wheat bread, does not fall apart and is even able to be eaten with just butter. They also make some brown rice breads, really tasty but very high carb hot and hamburger buns and other stuff.

My concern with the Ener-g crackers is that if the company follows the codex standards for gluten-free they may be using ingredients that are 'processed to be gluten-free'. IMHO gluten free should be gluten-free, not processed to be. They may very well not be causing a problem but the ideal way for you to tell would be to stop eating them for a month or two and if things get better then challenge with them. Eat them at least 3 times a day for a week without adding any other suspect items. That will let you know for sure if they are something your system can handle. We all have very different tolerance levels and in the US for most of us the time to diagnosis was very long not the 2 to 3 weeks often seen in more celiac savvy countries. I think this tends to make us more sensitive to CC than the folks who are diagnosed before they are half dead.

Also different celiac presentations seem to have different levels of sensitivity, in general it seems folks that have neuro problems tend to react to even the smallest amount of CC and the grain vinagers and alcohols. The folks that are mostly GI impacted seem to have an easier time with codex and mainstream foods.

[SunnyDyRain]

Thanks- I got rid of milk, but I haven't been searching it out of product/recipes like I have gluten. I'll have to try that; sadly I think it means the breads I have will have to go, and cheese was a major protein source.

Im not trying to lose weight like this; it's just been happening. (Certainly not the way my weight normally used to work!!) It seems too quick to me too, but the GI and PCP didn't seem to think it mattered because I wasn't that skinny.

I understand how it's hard to take the milk out, I at first started just with dairy, but I've gotten to a point that I took a Centrum Vitamin (they have milk in them) and got sick.

[grey]

Thank you ravenwoodglass for such a clear explanation. I definately see your points, especially regarding 'processed' to be gluten-free. Maybe once healed ...

I know I'm pretty sensitive - I've always had certain foods and additives (MSG, aspartame, for ex.) that were triggers for migraines in the smallest amounts so it makes sense that I would have sensitivity to other foods with CC, particularly as I'm not healed yet.

Your last point, that neuro seems more sensitive to cc that GI is fascinating to me. I wonder why that it? I had more the neuro, Ithink, for about a decade, with the gastro popping occasionally in the last 4, and only really hitting me in the last year (when it hit HARD). I imagine it's because more of the overall system is 'over'wired and hypersensitive to anything? I wish I were a doctor, these days, a good one and I'd be a celiac specialist! If I didn't love my career I would through it over to become a celiac advocate. This is CRAZY.

It seems like the best thing to is really to try to make as much as possible from scratch, which is largely what I'm doing for most meals as I can, but it's hard when fatigue is one of my worst symptoms.

THanks for your help!

It is not really neccessary to remove all grains unless they are problematical for you. I eat the Italian Bread they make which is white rice, tapioca and potato based. It IMHO is as close to the 'real' thing as I have found. It has a nice texture similar to wheat bread, does not fall apart and is even able to be eaten with just butter. They also make some brown rice breads, really tasty but very high carb hot and hamburger buns and other stuff.

My concern with the Ener-g crackers is that if the company follows the codex standards for gluten-free they may be using ingredients that are 'processed to be gluten-free'. IMHO gluten free should be gluten-free, not processed to be. They may very well not be causing a problem but the ideal way for you to tell would be to stop eating them for a month or two and if things get better then challenge with them. Eat them at least 3 times a day for a week without adding any other suspect items. That will let you know for sure if they are something your system can handle. We all have very different tolerance levels and in the US for most of us the time to diagnosis was very long not the 2 to 3 weeks often seen in more celiac savvy countries. I think this tends to make us more sensitive to CC than the folks who are diagnosed before they are half dead.

Also different celiac presentations seem to have different levels of sensitivity, in general it seems folks that have neuro problems tend to react to even the smallest amount of CC and the grain vinagers and alcohols. The folks that are mostly GI impacted seem to have an easier time with codex and mainstream foods.

[ravenwoodglass]

Thank you ravenwoodglass for such a clear explanation. I definately see your points, especially regarding 'processed' to be gluten-free. Maybe once healed ...

I know I'm pretty sensitive - I've always had certain foods and additives (MSG, aspartame, for ex.) that were triggers for migraines in the smallest amounts so it makes sense that I would have sensitivity to other foods with CC, particularly as I'm not healed yet.

Your last point, that neuro seems more sensitive to cc that GI is fascinating to me. I wonder why that it? I had more the neuro, Ithink, for about a decade, with the gastro popping occasionally in the last 4, and only really hitting me in the last year (when it hit HARD). I imagine it's because more of the overall system is 'over'wired and hypersensitive to anything? I wish I were a doctor, these days, a good one and I'd be a celiac specialist! If I didn't love my career I would through it over to become a celiac advocate. This is CRAZY.

It seems like the best thing to is really to try to make as much as possible from scratch, which is largely what I'm doing for most meals as I can, but it's hard when fatigue is one of my worst symptoms.

THanks for your help!

I really don't know why the 'neuro' presentations would be more sensitive other than we seem to be impacted much, much longer than strictly GI folks. It is so easy to just say your child is clumsy, neurotic, depressed, has poor concentration, is ADD etc, especially in the 'old days'. Many doctors will just shrug thier shoulders when reflexes disappear or attribute mental problems to outside issues and not realize that there is something physical going on. In my case it was almost 30 years before GI issues set in, that is a long time for the brain to be assalted. Also many don't realize that gluten crosses through the mucous membranes in the mouth which sends the reaction directly to the brain. This means we tend to notice the minute amounts that others may not be aware they are taking in. This is of course my own educated speculation, since many doctors don't even realize that celiac can impact brain function I don't know if any specific studies have been done on this.

I know how hard it is to start doing stuff from scratch when we are so tired so often to begin with. I rely a lot of soups and stews, I make large batches and on the good old wrap it in tinfoil and stick it in the oven method of cooking. I've been surprised how much I can cook that way. Some fish or shrimp or even boneless chicken can just be wrapped up with some veggies and tossed in the oven. I even have times when dinner is just some cheese, cut up raw veggies and crackers. I did find though that as my energy levels improved, which did not take long, cooking didn't seem as much of a chore. I find I often have the energy to cook, do dishes and mow the lawn after. Before gluten-free even doing the dishes was hard and mowing my lawn took 2 days not 20 minutes.

I hope things improve quickly for you.

[grey]

Let's see, um, not very coordinated, neurotic, anxious, easily distracted, yet focuses too hard, funky reflexes, 'mysterious fainting spells' ...

first they got so worried that it was thousands of dollars of medical tests - you name it, I've had it (MRIs, halter monitor, etc etc) - because one week it's MS! and then it's hypochondria, depression or stress. 30 years! For me it's been about 15, but I think there may have been some symptoms earlier. But the fainting and the testing starting then.

It does seem like more research is getting done, but it's clear that there's a lot yet to BE done.

I think I need to learn to use a crockpot on days when I feel better. I'm inspired that you say you say your energy levels improved, and in not that long, enough to where you have the energy to cook, do dishes and mow the lawn. That seems impossible. I was also unbelievably reassured (it sounds stupid, but it's true) to the point of tears to read that before gluten-free that doing the dishes was hard for you. Doing the dishes has been killing me, and it seems so stupid that it's so hard. Each meal feels like a mountain. Thanks so much for your posts...

I really don't know why the 'neuro' presentations would be more sensitive other than we seem to be impacted much, much longer than strictly GI folks. It is so easy to just say your child is clumsy, neurotic, depressed, has poor concentration, is ADD etc, especially in the 'old days'. Many doctors will just shrug thier shoulders when reflexes disappear or attribute mental problems to outside issues and not realize that there is something physical going on. In my case it was almost 30 years before GI issues set in, that is a long time for the brain to be assalted. Also many don't realize that gluten crosses through the mucous membranes in the mouth which sends the reaction directly to the brain. This means we tend to notice the minute amounts that others may not be aware they are taking in. This is of course my own educated speculation, since many doctors don't even realize that celiac can impact brain function I don't know if any specific studies have been done on this.

I know how hard it is to start doing stuff from scratch when we are so tired so often to begin with. I rely a lot of soups and stews, I make large batches and on the good old wrap it in tinfoil and stick it in the oven method of cooking. I've been surprised how much I can cook that way. Some fish or shrimp or even boneless chicken can just be wrapped up with some veggies and tossed in the oven. I even have times when dinner is just some cheese, cut up raw veggies and crackers. I did find though that as my energy levels improved, which did not take long, cooking didn't seem as much of a chore. I find I often have the energy to cook, do dishes and mow the lawn after. Before gluten-free even doing the dishes was hard and mowing my lawn took 2 days not 20 minutes.

I hope things improve quickly for you.

[ravenwoodglass]

Let's see, um, not very coordinated, neurotic, anxious, easily distracted, yet focuses too hard, funky reflexes, 'mysterious fainting spells' ...

first they got so worried that it was thousands of dollars of medical tests - you name it, I've had it (MRIs, halter monitor, etc etc) - because one week it's MS! and then it's hypochondria, depression or stress. 30 years! For me it's been about 15, but I think there may have been some symptoms earlier. But the fainting and the testing starting then.

It does seem like more research is getting done, but it's clear that there's a lot yet to BE done.

I think I need to learn to use a crockpot on days when I feel better. I'm inspired that you say you say your energy levels improved, and in not that long, enough to where you have the energy to cook, do dishes and mow the lawn. That seems impossible. I was also unbelievably reassured (it sounds stupid, but it's true) to the point of tears to read that before gluten-free that doing the dishes was hard for you. Doing the dishes has been killing me, and it seems so stupid that it's so hard. Each meal feels like a mountain. Thanks so much for your posts...

Actually in the year or so before diagnosis even getting out of bed was hard. After my 2 to 3 hour stint in the john in gut wrenching pain every night, (IBS my butt) I barely had the energy to move. As for moving most of the time I had to rely on walls or canandian canes just to get around. I was scared to death someone would find out I had to use my arm to move my leg from gas to brake, the nerve signals were just gone. And the meds, my gosh I still can't believe how many I was on. And how many of them are now black boxed or pulled. Don't lose hope, I know it is hard. The day I unconsiously ran up the stairs I sat at the top and cryed like a baby. It really is amazing how far we can heal. Make sure you get some sublingual B12 even if doctors said your numbers are fine. It is not a vitamin that you can get too much of and it can really help in healing the neuro and energy issues.

[grey]

They dx'd my B12 deficiency first, which is how my PCP got to the Celiac. So I have B12 self-injections. It's supposed to be every 3 weeks, but I'm at every 6 days and still showing a deficiency (along with ferritin, folate, and iron - they won't test for anything else - it's all going to normalize so why bother? according to the doctors). Normal the B12 injections, which go in the muscle, don't bleed much. Yesterday's bled everywhere and I have so many bruises. I'm definately not in as bad of shape as you were - the shots have kept my head above water. It scares me what you must have felt like without them! I have a lot of trouble moving glasses (I use plastic and fill them partway) because I tend knock things over with the back of my hands or not be able to grab them hard enough. The tingling nad electric shocks are scary, but I haven't had too much worse than falling. i'm on a lot of meds too; there were a bunch that I became intolerant to and can't take anymore (even ones like advil!), or have gone off the market. Others the doc has me using as off-label. I've been running on adrenaline, fear, and guilt this year and I think I'm about out of supply.

I'm so glad to hear that healing can happen.

thanks!

I wish the GI and neuro doctors were trained better - or that they had any idea about each other's specialities. (adn hematology & thyroid/adrenal specialists too).

Actually in the year or so before diagnosis even getting out of bed was hard. After my 2 to 3 hour stint in the john in gut wrenching pain every night, (IBS my butt) I barely had the energy to move. As for moving most of the time I had to rely on walls or canandian canes just to get around. I was scared to death someone would find out I had to use my arm to move my leg from gas to brake, the nerve signals were just gone. And the meds, my gosh I still can't believe how many I was on. And how many of them are now black boxed or pulled. Don't lose hope, I know it is hard. The day I unconsiously ran up the stairs I sat at the top and cryed like a baby. It really is amazing how far we can heal. Make sure you get some sublingual B12 even if doctors said your numbers are fine. It is not a vitamin that you can get too much of and it can really help in healing the neuro and energy issues.