Yet anoher Celiac possibility candidate

aude · Joined: 20 Jun 2008 Posts: 4

The doctors here where i live can't figure this out. I have been like this for years and been to 3 doctors and the all come up with 'i don't know what it can be' attitude. I just want to know if this could be celiac or something else. So that way i can go see a doctor and tell that person to test for celiac.

The following symptoms i have:
red dots all over my body ( mainly legs and scalp)
those dots can be itchy
Seasonal affective disorder( both types normal and reverse)
3 other forms of dispersion
irritable
anxiety
nerve ticks
gassy after eating
sometimes reflux
tired after eating meals
lower back pain sometimes so sever that i almost need a wheel chair
I can clear a whole house sometimes when i have a stool passing
diarrhea
most days i can drink upwards of 4 gallons of water
i have a tear in the back of my left ear and on my left eye (on the one side where the top and bottom meet.)
partial lactose intolerant
weird body odor( mixture of root beer and coke. And I dont drink pop)
joint problems( cracking alot and painful)
sinus headaches
nosebleeds
always cold(even in the dead of summer i have to wear a sweater or some heavier clothing cause i am freezing)
not sure if you can call this a symptom, i can't tan. I am always white, i don't even burn

I wish i knew what was going on so that way i know what to do. It's kinda scary consistently going through this same nightmare for those years.

Hopefully some one can help. Smile

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

Hi Aude,

Welcome to the board! Yeah, that's quite a list you have there. Sorry to hear that.

Do you know if they've tested your thyroid [cold all the time]? With your thirst, have they checked for diabetes or diabetes insipidus?

Have you been to a dermatologist to have those skin lesions tested for Dermatitis Herpetiformis [the skin manifestation of CD]?

Certainly there are some of your symptoms that are consistent with CD. Since they haven't found anything yet, testing for CD would be a good idea. Often times, it's one of the last things that get tested for...worse yet...it's NEVER tested for.

Please check out Our Thread on Celiac Blood Tests & More Diagnostic Info. It might not hurt to look thru Our Thread on Info aimed at Medical Professionals too. Oh and Our Thread on CD Symptoms

Keep on reading, learning and asking questions!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

aude · Joined: 20 Jun 2008 Posts: 4

I have been tested for thyroid problems,diabetes(type 1 and 2), metabolic syndrome, most of the major bowel type related disease. The one dermatologist suggested that it could just be acne on the body. I have been poked and prodded so many times. One doctor thought i was doing this to my own body. All tests come back negative or nothing is wrong.

Doctors here couldn't find there nose if some one pointed where it was :-p.

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

Sadly, your doctor experience is all too common. This is where patient education comes in. It just another tool in your tool belt that will help you to get some answers.

The average length of time for diagnosis is CD is around 9 years. Way too long in my book!

Do the lesions on your skin look like those pictured in the DH link?

I think if it were me, I'd ask my doc to run all those tests listed in the Celiac Testing thread I posted earlier and go from there.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

aude · Joined: 20 Jun 2008 Posts: 4

The lesions are as bad as that at least on my body but my scalp is. The ones on my body are mainly red dots, smaller in size some are larger and itch more. I don't seem to have very many on my arms and hands. All though i have been getting more and more freckles but not lesions.

How come it takes 9 years to diagnose CD?

cruelshoes · Joined: 23 Sep 2005 Posts: 2688 Location: Washington State

aude · Joined: 20 Jun 2008 Posts: 4

Kinda how i feel. Getting tested for this that and every thing they can think of. And it seems like its for nothing. Although it's weird that celiac isn't very well announced in the medical community and so many people are left to either find another doctor or self diagnose.I didn't even know about this until some one i knew from the gym told me that he saw similar symptoms that his daughter has. Since she was diagnosed with celiac. O well at least i hope i am on the right track and everything works out .