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.
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!
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.
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!
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!!
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.
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!
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.
ATTENTION ANYONE EXPERIENCE ITCHING:
You have parasites! Almost 95% of people have some sort of parasite. These parasites breed, and make hundreds to thousands of eggs per day! Sugars, natural or artificial, seem to feed the parasites, creating candida. If you have allergies or suffer from post-nasal drip (like I do), and have the sensation of mucus or "something stuck in the back of your throat", these are parasites "coming down to feed" on the sugars, dairy, and other mucus-forming foods you consume.
Let me list the ailments I’ve noticed, just in my own health struggles, over the last 20+ years: dry, itchy scalp (NOT dandruff, but I NOW know they’re demodex mites), thinning hair (or bald spots), allergies, sinus issues (PND), “cluster” and migraine headaches, eye floaters, visual disturbances, acne, occasional lesions, occasional ringworm & small white spots that appear randomly over the body (caused by what I NOW know is a skin fungus), easy bruising, anemia, constant weight gain (even when not eating much), itchy skin (especially on the lower legs), abdominal pain/gas/boating/IBS symptoms, vaginal/rectal itching (especially at night), depression/mood swings/memory lapses, body odor/bad breath, and nail fungus.
Most of the time, these parasites are "stealing" the nutrients from your foods, to feed and protect themselves in your body, leading to issues like abdominal discomfort, IBS/Crohn's, Diabetes, Anemia, easy bruising, Cancer, and other ailments.
Unless you go to a holistic or naturopathic doctor, your stool samples, and other blood tests will MAGICALLY turn up "negative". WHY YOU ASK??? Because the medical profession NEEDS you to keep coming in for unnecessary tests and medications, TO KEEP YOU SICK! It's more profitable for the FDA and Big Pharma, to keep one believing that something is wrong with them (whether gastro issues, psych issues, or other more serious illnesses and diseases), than to CURE YOU of your issues!!
I have parasites. LOTS OF THEM! I have been to several doctors that just write off anything you say, but are quick to order medications and other unnecessary (expensive) tests that DON'T WORK! I'm also a nurse (for over 35 years), and don't take one's word as gospel, until AFTER I do my own research.
In my research, I found an interesting link between parasites, an overabundance of candida, and various health issues. I’m an avid gardener, love sushi, grew up eating pork products, have always had pets (that I kissed often, and allowed on my bed regularly), had pinworms as a child (that I THOUGHT had been treated), and as an Emergency Room nurse, tended not to eat the best diet (I’ll admit). Yep, I fit the bill for parasite infestation.
I decided (after the last physician treated me like I was ignorant) to order natural supplements (from Amazon) to rid myself of any parasites. BTW, don’t bother buying anything for a candida cleanse (like I did) because until you rid the body of parasites, the candida won’t be eliminated. This candida buildup creates the “perfect storm” for various diseases and illnesses, including cancers, diabetes, lupus, multiple sclerosis, IBS, Crohn’s disease, yeast infections, etc.
I ordered Dr. Clark's Super W Blend (which contains Wormwood, a POWERFUL anti-parasitic); Organic Cloves; and GREEN Black Walnut Hulls TINCTURE (Black Walnut Hulls capsules are fine, but the liquid GREEN Black walnut TINCTURE is far more effective. TRUST ME ON THIS).
I kid you not; by the second day, I passed worms. Clear, (sometimes white) stringy worms (pinworms) and tons of egg larvae, were in my stools. And, my stools were NORMAL stools; I wasn’t having diarrhea or constipation. Just an incredible urge to go to the bathroom! Sometimes, I went to the bathroom more than 4 times a day! The Super W Blend and Green Black walnut tincture kills the adult worms, and the Cloves kill any egg larvae.
I couldn't believe my eyes! But I was even more focused to get these things out of my body! I even brought in a stool sample that anyone, even those with slight intelligence, could glance at quickly, and KNOW something was wrong. But guess what?? The tests for Ova & Parasites, came back negative. WTF??
So I stopped going to doctors, because I now KNOW what the real deal is. If you want to rid yourself of these issues, you must be PROACTIVE in YOUR OWN HEALTHCARE!!
I will say that once you start this protocol, YOU MUST CONTINUE AT ALL COSTS! If you stop, the parasites regroup, and you experience even MORE issues! I must tell you, however, that you’ll feel worse before you feel better. I went through the sensation of “things crawling all over my body”. These are the parasites knowing they’re under attack, dying, and releasing their toxins, which poison the blood and leads to intense night sweats, increased body odor/bad breath, and insomnia (especially between the hours of 2-3am). You may have also noticed these worms become MORE ACTIVE around the time of the full moon. For the sinus/PND issues, I also added Oil of Oregano capsules; take 1 capsule 3x/day. For immediate relief of that sensation of “something stuck in the back of my throat”, I break one of the capsules in my mouth, and allow the oil to slowly go down my throat. The oil burns, but it kills worms “coming down to feast”. NEVER swallow the mucus! Cough it up and spit it out! Swallowing the mucus (which contain worms & their larvae) goes to your intestines, to begin their lifecycle all over again!
Stay away from any sugars (even natural sugar), dairy, grains, white flour, white rice, white bread (they convert to sugar in the body, thus feeding the parasites), and any mucus-causing foods, as much as you possibly can. Buy Food Grade Diatomaceous Earth, and put 1 TBSP in water (or another drink) and have that once or twice per day. Be SURE to drink PLENTY of fluids afterwards, as DE tends to constipate you. The DE are tiny, microscopic fresh water diatoms, that under a microscope looks like Chex mix; their edges are sharp, and shred the parasite’s body, rendering them helpless (or killing them), so they can be easily flushed from the body with the other products mentioned earlier. The DE also has other benefits: can be used in a home-made toothpaste (to re-mineralize teeth); for pest control (in and outside of the home, so lose your pest control company fees ☺); can be mixed into pet’s food to kill parasites in their bodies, as well as rubbed into their coats to kill fleas and other parasites, amongst other benefits!
****FOR THE ITCHING: Tea Tree Oil body washes! I run a bath (with the water as hot as I can stand), put a few squirts of this into my water (along with Epsom salt, I find parasites cannot stand this!) and sit/soak for at least 20 minutes. NO MORE ITCHING (for that day at least). Change all bed linens and wash your clothes daily. Vacuum resting spaces DAILY. DO NOT KISS, or allow pets onto your bed. Be sure to treat EVERYONE in your household, as its more than likely, they’re infected too.
This is working for me. I hope and pray that this helps others.