What were everyones very first symptoms?

collagastritis84 · Post by **collagastritis84** » Mon Jun 07, 2010 10:54 am

before you even knew you were really sick..when you didn't feel quite right. did all your symptoms come once?Early on mine were fatigue and joint pain

Linda in BC · Post by **Linda in BC** » Mon Jun 07, 2010 11:21 am

Hello Ibrown:
Not sure if I have formally welcomed you or not, so

.

For me, it came on like "gang-busters".. after a very stressful experience (divorce). I just started having non-stop D. one day, although I had been prone to short bouts of it off and on, most of my life. I have never had joint pain but did have fatigue which at the time was attributed to my hypothyroidism. that started about 4 years before the MC symptoms.

Linda

Stanz · Post by **Stanz** » Mon Jun 07, 2010 11:32 am

For me it was in early childhood. Stress would trigger stomach aches and D. I had what was dx as endometriosis as a teenager, had a hysterectomy at 26, followed by 8 years of partial bowel obstructions eventually resulting in a total blockage. Surgery showed leather shoelace like scar tissue that had closed off my intestine. I'm pretty convinced at this point that the scar tissue was caused by gluten sensitivity all along, as many men who eventually were dx w/MC have had the same problem. This progressed to arthritic symptoms when I was in my 30's. In my 40's they got much worse and I was found to have lead toxicity. Got great relief from chelation for that, but the pain symptoms and stress related D continued, as well as new skin symptoms and constant infections. Never tested positive for RA or any other disease during all those years. Refused methotrexate, sulfasalazine, etc. as I knew there had to be another cause. So fast forward to age 58 and unremitting D, weight loss, etc. and finally the dx of MC last winter.

I've used this analogy here before, from one of my earlier ND's. Picture a small vial in your body that collects toxins. When that vial is full, it spills out and makes you sick. It could be bowel symptoms, pain symptoms, skin, fatigue, etc. it comes out somewhere. Ultimately it is just a syndrome of illness caused by diet and environmental toxins, IMO.

harma · Post by **harma** » Mon Jun 07, 2010 12:07 pm

The d started from one to the other day, I thought a had a virus of a stomach flu. Only this one didn't go away. Although a couple of weeks that it started with strange noise in my belly.

But looking further back, I have had bowel problems since 2001. So before the MC started for 8 years IBS like symptoms. Gassy (very gassy), once in a while get cramps and pain of food during night (peppers, mushrooms) but not very often. Not be able to wear trousers or a skirt (to tight around the waist), swollen abdomen. Also not periods of d, but more loose BM's. Together with that, almost at the same time as my bowel problems started, I started to have real serious sleeping problems. Because of that I had a lot of others mental problems, who in general I would describe as troubles in cooping with life.

I am sure one is related to the other, earlier bowel problems, MC and sleeping problems. Although I don't know exactly how.

The fatigue, also have been a part of my life since 2001, but also due to my sleeping problems. I never have had joint pains.

Interesting question by the way

Post by **tex** » Mon Jun 07, 2010 12:22 pm

For me, it was recurring episodes of what I thought were either the flu, or food poisoning. This went on for over a year, with the episodes becoming more frequent, as time went on. Then one day the diarrhea started, and wouldn't stop. That's when I decided that it was something other than the flu or food poisoning.

IOW, my first symptoms were apparently mostly neurological symptoms, due to gluten crossing the blood/brain barrier. Apparently, that applied to you, also. That's the case for many people, and then the "serious" gastrointestinal symptoms come later.

Tex

Ginny · Post by **Ginny** » Mon Jun 07, 2010 1:48 pm

Same as Harma.......one day fine and the next day non-stop D. Also thought I had the flu but after 10 days of it and getting worse I knew it was something else. As an adult, I had two bouts of D and tremendous amount of pain that lasted each a yr.; 15 yrs apart. It has always been about stress. No one could ever find anything wrong with me prior to this bout. Best thing I have done for myself is join this very informative group. I would still be in the same shape I was had I not found this group because no matter what meds I was taking, I was still very nauseated and the D still kept coming. After 6 months on a very strict diet and 1 Entocort a day, I am able to function.

Ibrown, just keep looking for answers in this forum and remember we are all different in the way we heal. Ginny

collagastritis84 · Post by **collagastritis84** » Mon Jun 07, 2010 2:05 pm

Thax linda & Ginny, yeah i'v had neurological symptoms for about a year and a half then a 2month bout of D that started last sept after a stressful move out of my old APT. I got it under control with changing my diet. Tex how will it take the GF diet to me feeling like my self again? I'm now dedicated to it after reading a new found case study, going to give it at least 6months-1yr. I have allot of muscle aches, twitching, tingling in feet and bad anxiety at times. Just not myself at all! I was always relaxed and happy with life b4 this...

Joefnh · Post by **Joefnh** » Mon Jun 07, 2010 3:36 pm

IBrown, my symptoms were fatigue joint and muscle pain for the past at least 12 years. Slowly though I notices certain things like spaghetti (gluten heaven) not settling and then dairy products... All of this happened slowly over the 12 years then wham this past April D+++ and sick as you can imagine.

--Joe

Post by **tex** » Mon Jun 07, 2010 5:10 pm

You should see significant improvement in a few months, and remission in 6 months to a year, (unless you still have other remaining intolerances that need to be removed from your diet).

Over the years, I accumulated enough neurological damage from gluten, that I have significant peripheral neuropathy in my lower legs and feet, and I was having fairly serious balance issues. My reflexes, and sensory perceptions were almost non-existent last summer, when I started taking Metanx, which is a prescription combination of megadoses of vitamins B-12, 9, and 6, designed for diabetics with peripheral neuropathy. I was recently checked by a neurologist, again, and I was gratified to learn that I can now feel pin pricks virtually everywhere, my reflexes are almost normal again, and my balance is much better. That stuff seems to work.

Tex

collagastritis84 · Post by **collagastritis84** » Mon Jun 07, 2010 5:13 pm

Thanks tex!

JoAnn · Post by **JoAnn** » Mon Jun 07, 2010 5:45 pm

Hi ibrown, wow, you're the only one I've seen post about having twitches. I have all kinds of muscle twitches which I never had before mc. The most troublesome will happen around my eyes and other places in my face, but I can feel them in different places on my body at different times. My pcp thinks its because of not absorbing minerals properly, but I've supplemented and still have problems. I think it has to do with gluten and autoimmune issues. I was very healthy my entire life except for having mitral valve prolapse. I take atenolol to control arrythmia. I think I crashed after menopause. That's when I went hypothyroid, had restless legs, insomnia, muscle issues, extreme fatigue and lost my sense of well being. It has been quite a journey to figure it all out and get pieced back together. This board has been a key component in doing that. All these things seem to connect and I would have never known about gluten and other sensitivities if it wasn't for this board. I thought my thyroid was causing me all the problems until I was diagnosed with mc, now I don't know which one was (is) to blame the most. It takes a lot of patience to figure out your own path. Good luck to you, JoAnn

Stanz · Post by **Stanz** » Mon Jun 07, 2010 7:59 pm

ibrown & JoAnn,

Ah, the twitches, nothing like that to make you think you have no control anymore. Been there. I don't know if it's just a matter of not being able to absorb minerals since we aren't absorbing what we eat, or if it's something else, but I'd forgotten about that.

I had severe cramping in my leg muscles as well. For the last few weeks I've been taking extra magnesium and potassium and the cramps have stopped, but I can still feel them "wanting" to start, if that makes any sense to you.

Yeah, it takes a lot of patience to figure this out. We'll get there. Our bodies just need us to fix them. We have the available knowledge to do this.

Connie

Olivia-Micro-Colitis · Tue Jun 08, 2010 12:01 am

for me when it comes it all comes at once. Which i had today. that dehydration slaps me and from there its down hill. Today is one of those days. very painful.

ant · Post by **ant** » Tue Jun 08, 2010 12:33 am

Dear Ibrown,

Like many others, for me the chronic D started with what seemed like a flu and chest infection. But for several years before that I short bouts of D about twice a year treated with antibiotics. Also for the last 15 years (after having typhoid) I had balance issues of various intensity including full on vertigo attacks (one requiring hospitalization). I was dx as having Labyrinthitis (viral infections of the inner ear), but I wonder if there is a connection? Since going GF my balance has improved.

Hope this info is useful,

Best wishes, Ant

ant · Post by **ant** » Tue Jun 08, 2010 12:35 am

Dear Olivia,

Sorry your having a bad day.

Ant