Strange illness ruining my life!

[Aslo]

It started with the big d and lots of nausea belching and discomfort around the solar plexus. I got so ill, i thought i had chron's disease.
I was given a med called pentasa and that made the runs worse. 5 days after taking it, i got a pain in my shoulder and lumbar area at the same time. Then i began to have neuropathy in my arms, and side of my thigh.
The side of the thigh neuropathy moved into burning in both feet.
The runs calmed down, but now i had constantly soft stool. And neuropathy. All of this took its toll, and i began to lose my business, and my mind. Started having panic attacks, depression.
Had xrays, much blood work, gastroscope, colonoscopy, small bowel series, ultrasound of the gallbladder etc. To my amazement they can find nothing.
I went about 90% gluten free ( i know) but didnt notice too many changes.
Then i went sugar free and the stool improved somewhat. I cant eat sweets at all. I was drinking gatorade a lot then realized how sweet it was. When i stopped the gatorade, the stool firmed up. I have to experiment more, but i ate three slices of bread in a restraunt the other day, and the bowels were not changed the next day. One night i ate a piece of cake and the next day the bowels were messy.
All my vitamin mineral levels were o.k. on the blood report. My gluten test
came out with one marker just over the flag, and the other normal. The g.i. doctor said that the villi looked fine, so he would say i dont have CD.
The strangest thing perhaps is that if my feet are not burning at the moment and i have a bowel movement, then my feet start burning and my anxiety, heart pounding etc. Its almost as if there is a neuropathy switch in my colon, stool goes by, pain and neuropathy increases.

Diet makes a difference, but so far it seems more like sugary things than wheat. Yeast? None of my doctors believe in that.

If anyone can make any sense of this, I would be grateful, it has ruined my life for a year now not to mention my mind.

Sound like CD anyway? Yeast ?

[Aslo]

I was also wondering is it true that CD can be brought out by something like panic attacks? Im 52 and have eaten pretty much what i wanted, so this is new to me. Could the panic have brought it on?

[Georgie]

Hi Aslo,

I am replying to this & the message you posted to me on the Forum.

Sorry to hear about your problems. There is nothing worse than feeling ill or having symptoms & are unable to find the cause.

Four yrs. ago I was diagnosed with Fibromyalgia I do not think it ever was.
It was the beginning of all my problems. One thing I have learnt from it is, that I shall not give up until I really know the answers to my problems.

Don't let Dr's fob you off. You are not a hypochondriac or neurotic. I & a lot of other People have been down this path.

My neuropathy with hands/ feet became so bad I could hardly walk & I had started to drop objects. At night my feet/legs used to feel as though ants crawling. Now it is burning. During the day I take each hour as it comes.

I also have problems when I go to the toilet. My feet may already feel dead/tingly & as soon as I have a bowel movement they are dreadful..

Over the yrs I have had Back problems but this time I could hardly walk

Neck-tingling arms/hands/itchy scalp & face

Spine-Sciatica affecting both legs.

Numb Coccyx (Tail bone)

Don't normally suffer with panic attacks.

I have not been diagnosed but that doesn't mean I can't help myself.
The Dr's are not giving me any advice as they do not know what is wrong.

With regard to diet I went GF 3 wks ago. Emptied all my foods with wheat etc. I started Vit B12 + B Complex + Fish Oils(Now taking Omega 3)

After commencing GF my diahorrhea stopped + my abdo pain eased slightly. Noticed a diffence with the neuropathy after starting Vits.

I did not drink much alcohol, but when I did, did I suffer the next day.
Now stopped drinking alcohol altogether.

I also do not take any canned or bottled drinks especially the low cals. as they contain Aspartame. Do not eat pre-packed because of additives.

You have realised that one of your problems is sugar.

Have you had a Glucose Tolerance test for Diabetes? That causes neuropathy & with your bowel/sugar problem could be related.

A lovely Gentleman recommended a site called Braintalk.org to me. There is a lot of information there on Gluten sensitivity & Peripheral Neuropathy. It is very similar to this Forum. You can peruse the site without signing on, but you are unable to post on the Forum. I post as starmist on this site.

The People who Post on the different Forums are wise, helpful & have gained knowledge. It is from information posted there that I realised I needed Vits. Especially B12.
Vitamin Deficiency can be a symtom of nueropathy, especially with your Bowel/diahorrhea problems.

I hope this answers & helps some of your queries. Makes you realise that you are not on your own.

Take care Georgie.

[Georgie]

Hi Aslo,

I forgot to mention that even though your results may not show CD doesn't mean you don't have problems with Gluten. Sometimes Neuropathy symptoms appear before Gluten/Bowel/GI problems.

You will get better it just takes time. Think how long you have felt ill & the damage caused to your system. I only realise this because of what my own body is telling me.



Georgie.

[Aslo]

Thanks georgie.
You take it all much better than i have. I have all but lost my business, and its ruining my family life, as well as my brain.

I think its interesting that you also get worse when evacuating so to speak.What the heck can that possibly mean? You wouldnt think it would be vitamin/minerals, what difference would it make that the stool is leaving? There has to be some meaning to this?

I did have a glucose test, and the ten day average one, which were o.k. I couldnt do a five hour glucose, because i couldnt stand sitting at the lab feeling like this for five hours.

So yours started the opposite of mine? That is the neuro came first then the bowels? I also have this discomfort, pressure, pain just under the ribcage, that comes and goes.

If there are any other interesting details, clues, please let me know and thanks for the reply.

[Aslo]

georgie,

I would like to keep in touch about this. Too many similarities. I hope this is not against the rules of the board but please contact me at

allsupply@frontiernet.net

as soon as possible. Im hoping we can help each other, and I need it desperately right now.

Thanks

[Aslo]

Hi Aslo,

Glad it made a bit of sense to you.

I shall contact you again.

I think you would find a lot of answers to the other web site I told you about.

http://brain.hastypastry.net/forums


Go to the Gluten sensitivity & the Peripheral Neuropathy Forums.

All stuff I found helpful especially regarding Vit B12. You just don't realise the amount of information in those Forums.

Georgie.

[Aslo]

Thanks georgie. Please try the email i would like to send you something.


Aslo

[maria1223]

sorry to hear that all of u r going through alot I was there at 1 time. I have CD, crohns, fibromyalgia, neuropathy. this all leads to depression & panic attacks. u all are not crazy don't let anyone tell u that. I've had every procedure done that u can think of I've been in the hospital 5 x's
now my cancer sergon want's to operateto take a hiatial hernia out & to cut my esophagus & stomach where they meet. than reconstruct the esophagus & stomach with another peice of my stomach. so my stomach will be very small. also while he is in that area he is going to take a biopsie of the crohns. I have been on ditropan for 2 yrs because I can't hold my pee pee. I don't take to many meds anymore I go to my health store to get all natural vitamans to take it helps alot more than perscriptions from the Dr's.

good luck to all of u

[Aslo]

Maria,
Your condition sounds like a nightmare. Thanks for your comments, and i wish you the best.

[maria1223]

No it is really not a nightmare if it will help me feel better. yesterday I went to the mall with 3 of my kids just walking through the mall for 3 hrs I suffered the next day could hardly walk my right side just gave out and I fell have brusies all over my right side looks like someone just bet the hell out of me. today is a little better. I took some flexaril I really didn't want to take it but had no choice. I have to go tomarrow for an upper GI but they have to put a feeding tube in because I can't drink the barrium it is not G/F. my primary Dr. is the one that has to give the O.K. for the sugery done that I hope will be in aug.

thanks for the concern

[dkad]

[Guest]

Aslo: I don't have an answer for you but I sure hope you get the answers you are looking for and feel better soon. I was just diagnosed resently with CD and I wanted to know from you, what is the number that is "over the flag". My doctor never told me except that I was high. Would you tell me, please. Thank you.

[maria1223]

any kind of BARRIUM IS NOT GLUTEN FREE. I had to get an upper GI today & I have had diarreha all day after that. they gave me water after I was done drinking the barrium. that just made me go even worse.

[dkad]