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Possible celiac or Crohns? ...MY STORY..

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Celiac Disease
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Posted 10/15/2009 10:27 AM (GMT -6)
Hi Everyone,

 My name is Ivana and Im 20 years old. Within the past year I have been having some unusual things going on with my body and I cant seem to get any answers. Ill list all my symptoms( there are quite alot and unusal ones) and maybe someone can help me out..

** abdominal pain/bloating- brought on by eating or a BM

  running to the bathroom 30-60 mins after eating

heartburn

weightloss- ive lost 25 pounds since january(when this all started)

irregular periods

increased acne on face/neck/chest

hair is falling out-- thinned out so much i cant style it

fatigue

shortness of breath and dizziness

change in bowels- noticed more mucous

anal bleeding and pain after/during BMs

explosive diahreaa- occuring for about a month now-- very thin/pencil like stool that forms a pile (light brown/greenish yellow)

increase in gas

increase in urination and BMs causing dehydration

extreme joint pain- in knees down to ankles thats dabilitating.. pain in my hip bones started this morning ( really hard to walk now)

muscle stiffness in hands- hand gets stuck closed and wont open.. have to use other hand to pull open

muscle weakness in arms-- i cant use my arms for basic cleaning or holding a book up  or really anything for a extended period of time without them going numb and tingly and painful where i have to shake them out or take  a break.

have noticed more bruises appearing out of nowhere

very oily skin on my face where i actually have to wipe it off and can see it-- its gross

sweat very easily when i did work out and alot too-- i actually would have salt residue on my face afterwards(never ever had that)

unable to work out now b/c of joint pain and fatigue

change in sleep patterns( difficulty falling asleep and staying asleep-- wake up between2-4am..have night sweats occasionally)

occasionally nausea

i cant stand up for long periods of time- tire very easily

lack of energy all around-shortness of breath just walking up the stairs

i am very sensitive to cold-- hands /feet/nose are always cold .. it takes a long time for me to get warm

and oddly enough-- memory loss/forgetfullness/brain fog

emotional/depression

 i guess i could go on and on but i think u get the idea... ive been to my pcp for blood work several times in the last 6 months and everything seems to be coming back normal... i visited a orthopedic for my back and knee pain got prescribed PT for 6 weeks , only went for 2 because the amount of pain i felt in my joints worsened when i worked them out.. went to a GI ofcourse got more blood work done..again everything came back normal.. the blood work done was suppose to test for celiac but the results didnt show any testing for it.. (somebody didnt do their job) from my first visit i was diagnosed with IBS and put on miralax for the past 3 weeks... im suppose to go back in a week or two and get my first colonosopy to see whats going on in there and to rule out crohns... i went to my pcp on tuesday with all my symptoms and told them how its like everymonth i develop something else..got more blood work and am waiting on those results.

 i am looking for any advice/support in anyway possible... im really kind of scared and have never felt so ugly in my life...with my hair thinnign out so badly and some acne and paleness. its really taking its toll.... im 20 years old and i think most 50 year olds feel better then i do.. I cant wait to find out what it is that is making me feel this way.. so i can finally get treated and get my life back!

Posted 10/15/2009 11:00 AM (GMT -6)
Hi Ivana, and welcome to the forum!

I'm so very sorry to hear about what you've been going through....you're too young to feel that bad!!

Before my diagnosis I had most of the same symptoms you're experiencing. Many of your symptoms fit in with celiac disease and/or Crohn's. It is possible to have both diseases. Unfortunately celiac disease can cause lots of other problems....it can even open the door for other autoimmune disease to develop. There's a good explanation of how this happens at the following website: www.umm.edu/news/releases/zonulin.htm

Some of your other symptoms, such as the muscle issues, joint pain, cold hands and feet, etc., could be caused by any one of the following, or even combinations of them: rheumatoid arthritis (RA), fibromyalgia, polymyositis, Raynaud's Syndrome, lupus, MCTD, Hashimoto's thyroiditis....well, there are LOTS of autoimmune diseases or associated conditions that might be responsible.

So this is just a heads-up that you may possibly have multiple medical issues here; I certainly did. I ended up being diagnosed with celiac disease, fibromyalgia, autoimmune hepatitis, RA, Hashimoto's thyroiditis, Raynaud's, and psoriasis. Right now my rheumatologist is trying to figure out if I have lupus too!

Of course I hope you DON'T have any other AI diseases! :)

At some point you need to try the gluten free diet; this is a good thing to do for either celiac or Crohn's. But you should wait until after all testing for celiac is finished, or you risk getting a false negative in the blood work or biopsy.

When you do get to go gluten free, here is a very helpful link with all sorts of information and tips:
glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

Good luck with everything!! Please keep us posted!
(((hugs)))
JoAnn
Posted 10/15/2009 11:07 AM (GMT -6)
P.S. Also you should know that false negatives in the blood work and biopsy for celiac disease are very common. So even if you are told that your tests are negative for celiac, you should try the gluten free diet to see how it makes you feel. Just one or two weeks on the gf diet will likely make a BIG difference in the way you feel if you have celiac disease or non-celiac gluten intolerance (NCGI).
Posted 10/18/2009 6:36 AM (GMT -6)
Your symptoms are also very similar to Lyme Disease (especially the joint/muscle issues, fatigue, and pain) and read a lot like many of my own symptoms (I have Lyme), and there seems to be a group of folks with a triad of gluten tolerance issues, lyme disease and vitamin B12 deficiency (myself included) who get some help going gluten free but need to also deal with the vitamin deficiency and the Lyme.

I was misdiagnosed with Crohn's 20 years ago (I had an intestinal parasite instead that caused bleeding/fistula/diarrhea...but treatment of the parasite got rid of the symptoms and they haven't ever returned since), and have since found out that some people with "Crohn's" actually have a gut infection with Lyme bacteria, and not actual Crohn's. You might want to consider posting on the Lyme forum here at HealingWell.

Good luck,
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