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Can't eat, can't sleep, withering away to nothing, stomach hu...
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Can't eat, can't sleep, withering away to nothing, stomach hurts SO badly!!!!

27, no insurance. Family history: Familial Adenomatous Polyposis, depression. Personal history: depression (untreated), anemia & cervical cancer.

My normal wt.:102 been loosing wt. 2 months currently weigh 89 lbs, have no appetite, sense of taste gone, & food seems to turn to mush & will gag me unless I spit it out.  Was told I have celiacs but NOT tested, un-able to follow gluten-free diet. Often become nauseas/have stomach cramps after I eat. Feel full when I start to eat & often go 1-3 days w/out getting hungry or eating at all. For a year or more I've had diarrhea & constipation, sometimes w/ rectal pain / bleeding & fatty/oily/greasy stools or black & tarry. Was treated for non-related sinus infection with augmentin, rectal itching was so bad I couldn’t complete the meds. Had painful BM’s for app. 1 month after taking meds.  Things haven’t been normal since.   For the last 3 wks I've been vomiting often (usually nights), My muscles (esp. neck & back) are hurt, I have TERRIBLE night sweats & insomnia and 3 days ago I started passing purely mucus stool, smelly, white/yellow, jelly-like, slight rectal bleeding, no BM since this began. Stomach rolls and growls very loudly while passing mucus.  Is this medical or mental if don't wish to be skinny? I look GROSS, and I feel even worse then I look!!!!!!
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Avatar_f_tn
Welcome to the gastroenterology community!  You need to follow a gluten free diet for 2 months to see if that works.  If you need advice on how to do this then we can give you hints.  It really sounds like celiac disease to me so you need to try this.  It is hard but a lot of us have done this and it can be done.
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Avatar_m_tn
Yes...Any tips that you can offer would be great!  I tried to do a glutem free diet 2 years ago when my doctor said celiacs...but this was a very uncommon diagnosis then, I was not able to find many resources, the few "gluten-free" bread-like products I tried were HORRIBLE, and I felt like I was eating so little that I was going to starve myself....which turns out to be what I am doing now instead!
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Avatar_f_tn
I am sorry i dont know how it works in the States, if you have no insurance does this mean they wont see you in emergency??  Do they literally let you suffer?  If they do see you thats what I would do, go to emerge next time you get those pains at night so they can do tests and figure it out... 89 lbs is not good and you could start to develop other problems from that as well, which sounds like you might be already.
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Avatar_n_tn
Hi - I have Celiac & its a challenging diet at times (worst part is high cost of items!). Your symptoms are eerily similar to mine & I went from 170lbs to 113lbs. Bloody/mucus-y stool, severe pain in ULQ, bizarre & loud sounds in my gut.
Not sure of your situation, but ERs have to stabilize patient prior to release. Maybe state medical assistance or SSI (not disability, soc security ins for urgent medical). I'm sure you've explored options, but if you're anything like me - you may be seriously discouraged by the chronic pain & associated limitations.my condition was so advanced, malabsorption caused mad muscle pain (beyond cramping), deep depression/hopelessness, insomnia, dry/withered skin and lank hair, gums recessed. I'm 46 & totally GF x 2yrs, but the damage is slow to repair. I looked 85 when diagnosed w/Celiac Disease, diet and budesonide (steroid for belly damage/blunting of cilia?) I only look 79 now. Still have chronic pain, but likely pancreatic in nature. I won't tell ya to "cheer up" cuz that drove me crazy/was impossible to will my mood to improve. But may I suggest you try an ERlate at night, midweek and bring a detailed list of symptoms, even stool sample & ask to see their soc worker re: ssi or state med ins. Hope you get some relief!
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Avatar_m_tn
I am going to the doctor today!  All symptoms listed above are only getting worse.  I can not consume more then 2 or 3 crackers without feeling so full I am going to explode, and if I force myself to eat I suffer terrible pains, and eventually throw up.  Once I start I can't stop, ate 1/2 of a chicken sandwich at 8:30 pm, had terrible pain until midnight, threw up 6 times before sunrise.  Don't think I can handle another night like this!  I've contacted every possible resource and hopefully will find some assistance because I am uninsured, however at this point they are just going to have to bill me and I'll figure it out later!

I've spent all day reseaching my maternal grandmothers death.  She passed away in 1966 at age 28 (I'll be 28 this year)  My grandfather (who has never really spoken of her death) states: she had colon and abdominal cancer that burst and spread through her body ???  He stated that the cancer caused blockages in her intestine, that doctors did several surgeries to remove pieces of her intestine, each time they did surgery the blockage moved further up until she was completely unable to hold down any food.  He says that the cancer caused her to starve to death, she weight 79 lbs the day she passed away.  I contacted the hospital only to find that the records are all destroyed.  I then called the funeral home, and they told me that her cause of death was listed as "liver complications"  He suggested I contact the church because she was a very active member.  I did this, and within an hour recieved a call from a close friend of hers who drove her to cancer treatment every week in 1965, she is still currently a registered nurse.  She told me that my grandmother had colon and ovarian cancer, that she was recieving "cobalt" ?? treatments, at hospital two citites over. According to her the colon and ovarian cancer caused malnutrition, severe weight loss, stomach cramps, lack of apeteite, brown vomit, severe pain.  I have contacted the hospital that she said she drove her to, and they do still have her records, however I cannot gain access to those without a death cert. and proof of relationship!  I am applying for this record, but it will take 6-8 weeks for it to arrive.

While researching this I contacted other family members and learned that my Mothers sister is currently suffereing from almost the same symptoms as me.  She has the same stomach upset issues, BM problems, and pain.  We compared notes, and feel confident that we are both suffereing from the same illness. She has been to 4 different specialists and thus far has been given no diagnosis, she reports that they have completed every possible test, none have returned a conclusive answer.  She is on medication to help with nausea and increase apetite, she says these help, but she still suffers.

Now I am even more concerned about my lack of insurance and the number of medical tests that may be required to figure out what is going on!  However, on the same note I am concerned that doctors in 1965 chose the best possible known explanation but in honesty maybe my grandmother didn't have colon cancer!  Both her daughter and myself (her granddaughter) seem to be suffereing from the same illness that she did.  They have tested my aunt for every type of cancer possible, all with negative results, so it can't be colon cancer!  Either way, the fact that she died at aget 28 tells me that I need to find a resolution regardless of cost or the status of my insurance.  I am praying for quick and easy solution but I have a feeling that I may never find out what this is, and because I know my grandmothers fate I feel a whole new sense of hopelessness.  If I have another night like last night I will be going to the E.R. by ambulance, if I can make it at home until tomorrow I will be heading the hospital first thing in the morning!

I feel like I have scared myself beyond belief now!!
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Avatar_f_tn
I think the problem is celiac disease.  This causes the symptoms you describe and it is genetic (it can even cause death due to malnutrition if left untreated for a long period of time).  Tips for following a gluten free diet are to read all labels of everything you eat, don't eat out, and buy gluten free food (bread, pasta, etc.) from a specialty store.
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Avatar_m_tn
My celiac panel is back....and negative....I hate to sound like I was hoping for celiacs, but considering all things I kind of did want it to be....Atleast it can be controlled by diet....Now I feel like I have NO answers in sight, and I am back to sqaure one!

I'm researching diagnostic clinics, non-profit groups etc. in hopes of finding a diagonostic specialist who will actually see me with no insurance coverage.....So far I haven't found much!
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Avatar_f_tn
You said you were told you had celiac's.  Were you told this after receiving an endoscopy?  If so, the positive result on an endoscopy outweighs the negative result of a blood test.  Also, the blood tests are not 100% accurate (they are actually pretty inaccurate).  I would still recommend doing a gluten-free diet for 2 months.
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