Is There A Typical Range Of Extent/duration Of Recurrence Symptoms?

[ellen123]

Hello everyone,

I'm brand new to this, and I actually posted this inquiry yesterday in an effort to reply to someone else, but on further thought, it wasn't really a reply and it probably wasn't helpful to the person I was replying to -- it's my own set of stuff. Anyway, thanks to all of you for so much great information. It's been a wonderful help. I'm self-diagnosed and gluten-free for about a month. I've already experienced dramatic improvement in the one symptom that originally drove me to do the research (peripheral neuropathy for about a year) and, more amazingly, dramatic improvement in a second symptom that I never even expected to resolve: severe, chronic neck pain, that I've suffered from for over 20 years! After a week of gluten-free eating, my feet were feeling better, and I suddenly realized that for the first time in my memory, my neck felt almost 100% better! Through research on this site, I also figured out that the rash I've been getting intermittently is also connected. Now I'm starting to see that my daughter (and my mother) may also be gluten sensitive.

So here are my 2 questions: (1) is it really possible that I could have experienced such tremendous improvement in such a short period of time, or is this some figment of my imagination or reverse hypochondria? and (2) more important: I have had a couple of bouts of what I assume are accidental ingestion of gluten and a resurgence of symptoms, although they haven't been the same symptoms. But the symptoms have come back fast and furious -- even worse than they were before I went gluten-free. For example, during this past month I accidentally ate some gluten (only learning afterward, through this site, what I did wrong), and the resurgence of my symptoms was as fast and dramatic as my initial improvement was: my neck hurt so badly I couldn't turn my head for 2 days, and I got a rash of itchy spider-bite-like bumps -- something I have had on and off for the past year, but never connected to anything in particular. Last week it happened again (miso soup with tofu and/or green tea at a Japanese restaurant?). This time my neck was fine, I just had a little pain, but I broke out in the rash again, and now it's been 3 days and the rash is still here and covers more of my body than the last time and in addition, the peripheral neuropathy that hasn't bothered me since day 3 of being gluten-free is back. So new friends out there, is this how it's gonna be? Every time I eat something wrong by mistake, I'm going to have symptoms that come faster, and sometimes harder, than they ever were before I started this? Is this because I'm getting sensitized or de-sensitized or something? I don't know how to feel: on the one hand I feel totally liberated because I can see a way to control the pain I was having. But on the other hand, it seems like a minefield out there -- there's always a way, even if it's just through cross-contamination, to screw up, and then BAM! the symptoms are back, and all of them at once!

Sorry to be so long-winded. Another worry: maybe it's not just gluten that's playing games with me; maybe I'm not accidentally ingesting gluten, but knowingly eating other stuff but not knowing that I'm sensitive to it. So many in this forum seem to have multiple sensitivities. Anyone have any words of wisdom? Thanks so much.

[Ursa Major]

First of all, yes, the symptoms can absolutely improve that fast on a gluten-free diet. In May of 2005 I got really sick with horrible diarrhea, terrible stomach cramps and my backache got worse every day. I had no strength and was curled up in bed without it ever letting up for nearly six months.

When finally in October I figured out that gluten was the main culprit (my doctor ran all kinds of tests, but never tested for celiac disease, because I wasn't losing weight!) and eliminated it, it was a miracle. I stopped eating gluten one afternoon, and when I woke up the next day the diarrhea had stopped cold, and by the next day I could actually move, my back was getting so much better! Within two weeks I was off the codeine I had been taking for five years, 24 hours a day, for severe fibromyalgia pain.

I am also intolerant to many other things (which hit me after three months on the gluten-free diet), including rice and eggs. If I eat either, I will have stomach cramps, D and joint pains within a day, and my ankles and knees will buckle on the stairs.

If I eat peppers, within a day I will break out in pus-filled ugly pimples all over my face, which will take a week to clear up (at least).

Knowing how bad my reactions will be effectively stops me from cheating, and makes me very careful when eating out.

Your reactions may not be that much worse than they were before. You were USED to that awful neck pain! Now you are usually feeling fine, and when it comes back, it probably just seems to be much worse than it was. It is hard to imagine how we lived with that kind of pain for years and years, when it comes back now. How did we ever survive? But of course, we do because we have to.

[ellen123]

Thanks for the feedback, Ursa Major. I guess you're right: I lived with pain for so many years and was just stoic about it, just lived with it and suffered. I never thought I'd ever have a day without the neck pain, much less a straight week. I'm probably just noticing symptoms more on the occasions when I accidentally get glutened. I'm sorry to hear you're sensitive to other things besides gluten, and I'm hoping that it doesn't turn out the same for me, but it sounds like, on balance, it's a lot easier to avoid the bad foods than to live so limited by pain!

[YoloGx]

Thanks for the feedback, Ursa Major. I guess you're right: I lived with pain for so many years and was just stoic about it, just lived with it and suffered. I never thought I'd ever have a day without the neck pain, much less a straight week. I'm probably just noticing symptoms more on the occasions when I accidentally get glutened. I'm sorry to hear you're sensitive to other things besides gluten, and I'm hoping that it doesn't turn out the same for me, but it sounds like, on balance, it's a lot easier to avoid the bad foods than to live so limited by pain!

Well, not to be negative, I have to add that for me getting inadvertently glutened these days now that I have been avoiding trace glutens some of my short term reactive symptoms are spectacularly worse than in the past. I now get shooting D which I didn't have in the past. I also get the headaches and neck and shoulder pain etc. which I did have. I then got sick with a month long bronchitis followed by a UTI infection and sore kidneys--things I did get in the past but at different times. My system was reeling and way out of balance from having been shocked after several of these accidental glutenings happened to me.

I used to be off gluten for the most part for years and did not suffer so. However by avoiding trace gluten I am now much more reactive to just trace amounts of gluten. The trade off however is that in general (not counting the times I get CC'd) I no longer have sore joints, am more mentally focused and less anxious, no longer have headaches and sore muscles, rarely get sick etc. etc. Today I am finally healing after seeing an acupuncturist twice--something someone on the forum here suggested--though I still plan to take it easy for a few more days.

I am now committed to taking my food and drink everywhere and not eat other people's food or drink until they come up with a pill that makes it safer. Which fortunately some scientists are working at. For now though its totally worth the hassle for me to avoid the gluten when I compare one thing with another. I like being a physical person etc. and simply couldn't be very effectively with the trace gluten.

I am also learning how to bake more things for myself from scratch so I won't feel deprived when I want some goody or other. So much more is known now as to how to make the baked goods taste good rather than be rock like.

For most social events I bring a main dish that is big enough to share and usually people like what I bring. Having permanent fibromyalgia, permanent nerve degeneration, rotten kidneys, cancer, migraines, aching joints, possible cataracts and dementia, DH etc. would be way worse.

I also wanted to add that tonight I couldn't get out of going to my brother's birthday party at the Black Angus. I brought my food and drink, not wanting to get sick once again. My nephew with diabetes kept giving me a hard time about my not eating the cake. I said to him, you are just doing that because of your own difficulties fitting in. I also said that when they come up with the pill to heal this so I can safely eat out socially I will be glad to take it. However for me its just not worth getting sick again starting with shooting D. I also said it wasn't an allergy, it was an auto immune response where the body attacks the lining of the intestines. That pretty well shut him and everybody else who was thinking the same thing up and for once it was OK for me to be sitting there in the restaurant eating my own food I brought from home while everyone else in my family pigged out on steak, bread and chocolate cake etc. I had brought my own sweet (stevia) cornmeal applesauce muffins for desert so I didn't feel deprived and yet did not have to suffer.

I think exercise and yoga etc. really helps plus the detox herbs and supplements that heal and soothe the lining of the gut. However this reactive thing really is spectacular. I wonder if a homeopath could help but don't know if they could or not. Certainly the acupuncture was a great help. If I get glutened again like that and react the way I did I am going to run to my acupuncturist rather than wait and get sick. Just wish I could afford to see her all the time...

[mftnchn]

There seems to be quite a range of symptoms, onset and duration, severity, and degree of sensitivity on this board.

I am very strict for the most part. I had one known gluten exposure and one suspected one in the last several months. The onset of symptoms was about 2 days later and lasted several days. Both exposures were small amounts, and the symptoms weren't severe but were clear enough.

[gfp]

You got excellent answers so far so I'll just add.

I think its very important to realise just how we cope and put up with symptoms for years.

In many cases we only actually notice symptoms when they go away because we adjust and learn to live with them.

In the case of chronic pain our bodies get flooded with endorphins and our bodies get practiced at producing them.

Chronic pain is however a symptom, not a disease in itself. Hence we alleviate the symptom while allowing the disease to either get better or worse on its own.

In the same way many of the effects of celiac disease we get used to dealing with.... and there is also a part of this which is 'Im just getting older' or 'everyone must feel like this'.

When we go 100% gluten-free our bodies also loose the practice at removing the toxins and handling them, just like a 40 a day smoker can process the toxins and still feel OK ...

Then when we slip up our bodies have lost this practice ...

However the IMPORTANT thing in this is the 40 a day smoker might feel oK but that doesn't mean they are not doing damage!

They will probably even find they have symptoms they didnt realise if they quit.

Gluten can be the same ... Im sure there are plenty of people who go mostly gluten-free and say they are fine ... and I would through experience say they are probably not as fine as they could be. Having done this myself and other on the board I experienced a great improvement going gluten-free. It was just nagging things kept bothering me but otherwise I was so much better.

Then one day ... after one too many slips and nagging I went the whole way ...

I dicovered lots of symptoms over the next weeks and months. The improvement wasn't so drastic or quick as the gluten to gluten-lite ... but it was far more complete. I went from migranes 1 a month to 1 a year.. for instance.

[pixiegirl]

Yes you can feel that much better in a month. Yes your accidental glutening can make your symptoms come back with a vengeance or with new symptoms.

I had stoamach pain, D, fatigue, all the Celiac symptoms and after just 5 days of being gluten-free, I felt incredible. Not 100%better but 90%.

I am super strict with my gluten-free diet... accidents do happen once in a great while... but I'm super strict for 2 reasons.. I want to be healthy and when I goof up I'm so sick its not funny, way worse then before I went gluten-free.

Good Luck, Susan

[YoloGx]

It does seem we all have this reactive response to some degree or other, some more or less disastrous than others.

I was thinking on this again last night and was wondering if the homeopathic Rescue Remedy might help after such an accidental glutening to restore one's balance after such a shock to the system. Any thoughts or experience with this? Maybe it should be a regular thing to take after going out where other people eat no matter what??

[ellen123]

It does seem we all have this reactive response to some degree or other, some more or less disastrous than others.

I was thinking on this again last night and was wondering if the homeopathic Rescue Remedy might help after such an accidental glutening to restore one's balance after such a shock to the system. Any thoughts or experience with this? Maybe it should be a regular thing to take after going out where other people eat no matter what??

[ellen123]

Thanks to everyone for your thoughtful responses. I guess I'm going to have to figure out what will happen to me the hard way--through experience. But I'm still so grateful that I have stopped my worst symptom, the neck pain, that I doubt I will ever intentionally "cheat" -- and I'll just have to try harder not to get accidentally zapped.

Two questions: what's the emergency homeopathic remedy, and what does the term "Cc'd" mean? I keep seeing that on this forum.

Thanks again. Ellen

[dksart]

what does the term "Cc'd" mean?

CC = cross contamination (the bane of us all)

C D = celiac disease

Gluten-free = gluten-free

C-F = casein-free

DH = dermatitis herpetiformis (sp?)

D = diarrhea

C = constipation

Dx = diagnosis

Rx = prescriptions

Those are the ones I have figured out so far! Good Luck.

[ellen123]

It does seem we all have this reactive response to some degree or other, some more or less disastrous than others.

I was thinking on this again last night and was wondering if the homeopathic Rescue Remedy might help after such an accidental glutening to restore one's balance after such a shock to the system. Any thoughts or experience with this? Maybe it should be a regular thing to take after going out where other people eat no matter what??

What's the homeopathic Rescue Remedy?

[DanaC]

Hello,

I am just amazed to find someone else out there who has peripheral neuropathy and has made a connection with gluten. I'm not as fast as you are with finding a connection. I've had the neuropathy for going on nine years!!! It has just been in the last six months that I did enough web research and then experimented with going "gluten-free" and realized that there seems to be a connection. When I am competely off gluten, I do feel better.

To try to address your questions through my personal experience....yes, I feel immediately better when I go "gluten-free"...Yes, one little slip sends me reeling into a complete relapse of all symptoms...only they are exponentially worse!! Once I purged my self of the gluten, "slips" results in much worse symptoms.

I feel that there is definitely a connection between Celiac intolerance and autoimmune response which might even trigger other autoimmune disease.

My symptoms have always been intermittant but within the last year, I don't have as many symptom-free periods. I think that in my particular case, celiac disease has triggered some other autoimmune disorder and ingesting gluten exacerbates my condition.

I have yet to be diagnosed with anything in particular except for the neuropathy (after many years of MRI's). I am curious about whether any other bloggers on this site may have a co-morbid autoimmune disorder???

[ellen123]

Hi DanaC,

The funny thing about making the connection between peripheral neuropathy and gluten is that, once I went gluten-free (after ruling out the first several things on the list of possible causes for peripheral neuropathy), not only did the constant numbness and frequent pain and "shocks" in my toes go away, but I realized that I had been suffering from other symptoms that I either didn't connect to the others, or didn't even think were significant. For example, I never paid much attention to the intermittent rash I was getting. It was only after going gluten-free that I realized I had DH. For the year or two that I had been getting these itchy bumps and scabs on my legs, I simply thought I was suddenly more susceptible to bug bites than anyone else in the house! The neck pain that I struggled with I had given up on long ago. I simply thought that was my "weak part" and that nothing could be done. When I tried going gluten-free and resolved the peripheral neuropathy, suddenly the whole picture made sense.

I don't know about other autoimmune diseases. It seems like celiac alone can cause a whole multitude of symptoms in one person and relatively few in another, and at varying levels.

[YoloGx]

What's the homeopathic Rescue Remedy?

Rescue Remedy is actually a Bach Flower remedy. I just discovered they make it with Brandy. Its possible there is gluten in it since sometimes they color brandy with caramel. I need to check this out. Rescue Remedy is also in a cream -- I still need to check the contents of it.

At any rate Rescue Remedy helps a body deal better with any sudden shock. I have found it helpful in the past but haven't tried it since I have gone off trace glutens.

Meanwhile I know my nerves too are degraded. 3 years ago the myelin sheath was down 50%--so I was on my way towards some kind of real nerve degenerative disease. By taking 2 doses of Country Life co-enzyme B vitamins each day (not the sublinguals with sorbitol which sometimes have gluten) away from food many of my symptoms went away. The weird nerve feelings in my face went away. Also my heart stopped racing and my legs and feet stopped burning. I am probably still healing however given my current level of sensitivity to stress once CC'd.

The virtue of the co-enzyme B's is that they are more absorpable than regular B vitamins and go directly into the blood stream. I took regular B's for years with little good effect. The B's are needed for proper carbohydrate and protein metabolism as well as a functioning nervous system as well as a lot of other things basic to maintaining the human system. Celiac usually destroys our ability to make B vitamins or make use of ones we take given the scarring and blunting of the villi. But by bypassing the the normal process of going through the gut and instead going directly into the blood stream the Co-enzyme B's circumvent this problem and help one heal a lot faster.

However it still seems that when I get CC'd it is worse for me than for most people here on the forum, I am thinking its may be due to my still sensitive nervous system. I am still suffering and each time it seems I am well I get knocked back again these last 6 weeks. My body still seems to be suffering from exhaustion and I don't have much reslience. This is why I am trying to figure out some kind of antidote(s). Before I was CC'd however I was doing remarkably well.

Meanwhile, taking the marshmallow root and slippery elm helps heal the damaged villi--as does taking fibronylitic agents like bromelain/papain and nattokinase also away from food (I take them with the Co-enzyme B vitamins). These last are particularly effective at getting rid of scar tissue as well as getting rid of excess plaque in the blood vessels.

Another thing that really helps is to meditate and do yoga. It actually helps change the body chemistry for the better. I notice a real difference between doing it or not. Am just starting in again after the 6 weeks of illness. Already it seems to help. Actually I need to do it again tonight.

I hope this helps. Good luck with your healing!

[ellen123]

Thanks Yolo,

I'll look into the homeopathic rescue remedy. There's a natural food store down the street from me that has a pretty good natural pharmacy that also carries various homeopathic remedies. It's a good thing to know about, assuming it doesn't have trace gluten, of course.

Before I stopped eating gluten, I bought a multiple B vitamin with high folic acid -- it was labeled "for metabolism and nerves." I don't know anything about co-enzymes. I stopped taking them because I didn't notice any difference in the peripheral neuropathy and I hate swallowing pills. But all of this information I get from people on this website it helpful. Even if I don't take everyone's suggestions, it's good to pack away in what's left of my memory bank.

You too: good luck with your healing. It sounds like you're not giving up without a good fight!

Ellen