So sick and no doctor will take me seriously

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lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 8/11/2012 1:33 PM (GMT -6)   
I have been having gastrointestinal issues since birth. I was fed some sort of formula (in 1977) and after weeks of me vomiting, having horrible diarrhea that was so acidic it made my bottom bleed, my mom took me to the doctor who said I had colic and switched me to a different formula. The new formula made no difference. My mom says if I was awake, I was screaming as if in pain. When I began eating solid food around 7 months old, I started feeling better. My mom still cries when she tells the story of my first Christmas morning I woke up happy and smiling and the day was free of my normally constant misery and crying.
 
From then on a suffered from stomach aches frequently. I often missed school because my stomach hurt so much. In the 1st grade I was held back for missing so many days.
 
I bagan having hormonal issues starting at age 7. I had always been a normal weight, but within 2 months I gained 30 lbs. I began having acne at that time. By age 9 I had my first period. My weight was steadily gaining. I began having mood swings and severe anxiety. I had always had anxiety since birth, but it got really bad. I started having mental issues and at age 12 was hospitalized at a mental health facility for trying to kill myself by taking an overdose of medicine. I was then diagnosed with bipolar disorder. I spent my teen years suffering from lots of gatro issues (upset stomach, diarrhea). My periods were always irregular and when I did have them they were terribly painful.
 
Around age 13 I began having these stomach attacks that were so painful my parents would rush me to the ER. They always occured after I had eaten a big meal for dinner, and by the next morning the pain was unbearable and I would burp this awful rotton egg/sulfur gas. I could feel that the dinner I had eaten the night before had not digested and I would force myself to vomit and there would be my dinner, undigested. The drs in ER never could find what was wrong and would just sedate me. I saw a gastroenterologist who diagnosed me with spastic colon and irritable bowel syndrome. No treatment for either of these was given. 
 
My mental issues continued to get worse and worse through my teen years. I was hospitalized many times. By the end of my senior year in highschool I had gained so much weight I was up to 235 lbs. My periods had pretty much stopped. I had developed hirsuitism (abnormal hair growth on face, breasts, stomach). My mom took me to an endocrinologist who found I had something wrong with my adrenal glands. I was overproducing testosterone and DHEA. Since then I've seen several other endo's who have had different diagnoses. One endo diagnosed me with PCOS, but no cysts have ever been found in my ovaries. I had always been infertile, but by some miracle got pregnant around age 24, but the pregancy ended in miscarrage at 3 months. In my mid-twenties I was diagnosed with pre-diabetes (insulin-resistance). All the medicines that were given to me by these endo's caused me horrible side effects (especially gastro) and none ever helped me.
 
In the past two years I've been having severe gastro issues. It started 3 years ago when i began having stomach pains after eating for about a month. It got so bad one day I went to the ER and was diagnosed with pancreatitis. For the next year I had stomach issues on and off and last summer I had a very severe attack after eating a large dinner of steak, mashed potatoes, grilled bell peppers and sliced tomatoes) that brought on the old sulfur burps and severe stomach pain the next morning. After that attack, I was unable to eat solid food for 2 months. I lost 40 lbs. I had began seeing a gastro dr. after I got the pancreatitis, and he did many tests. He checked me for celiac (negative blood test), he did an endocopy which showed inflammation of the stomach and espophagus (which he attributed to my diagnosis of Acid Reflux Disease I had been given by my PCP ten years before) and he also did a stomach emptying test which was normal (I was shocked because I was sure I had gastroparesis and that's why my stomach wouldn't digest my food during these attacks...of course he tested me AFTER the attack had passed!). Since then he's pretty much given up on me. After my horrible attack last year, I went 11 months with no attacks. Then July 1st of this year I had another attack after eating a large meal (pork ribs, corn on the cob, sliced tomatoes). The next morning I was having the sulfur burps and incredible pain. It's been 41 days and I'm still unable to eat solid food. Only liquids. I've lost almost 50 lbs. I've been to the ER 3 times in the past month and a half, each time after trying to eat something solid (crackers/or rice). My gastro doesn't seem that interested in helping me. I saw my PCP last week and cried my eyes out and he suggested that maybe my issues were behavioral??? What does that mean? I was too shocked and confused to even ask him what he meant, but it seems like he thinks it's all in my head.
 
I just feel so alone and scared. I don't know what's wrong with me. I have been reading a lot about gluten intolerance and I wonder if that's my issue. I just don't understand what's happening to my body and I honestly feel like I'm dying. I tried to eat a very small amount of mashed potatoes (with a small amount of gluten free butter) last night and today my stomach hurts and I can still feel the potato in my stomach and even in my esophogus. I have serious acid indigestion issues and I can't even drink anything with fruit in it beccause the acid burning will be terrible. I feel so weak I can barely go to work.
 
Sorry so long but I have a lot of issues and wanted to get them all out in the hopes someone else has similar issues and recognizes my symptoms. I also get horrible rashes and itching. An allergiest tested me for alergies and I was negative for any. I'm hypersensitive to all pharmecuetical medicines I have been given and can't tolerate any of them. My PCP tested me for lupus and rheumetoid arthritis, and that came back negative. He also tested my ANA levels which were normal. I DO have super-low vitamin D levels. I experience all-over body pain frequently and my PCP suggested I may have fibromyalgia, but I couldn't tolerate the medicine he put me on.
 
Anyway, any advice would be greatly appreciated. Again, sorry so long. Anyone who reads this and can get through the whole thing, I thank you for doing so and would love some feedback.
 
Thanks so much!

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1989
   Posted 8/12/2012 7:53 PM (GMT -6)   
Lovermoon, what a troubling story, but welcome to the forums! There are many people on here who care, including myself, and would like to help you.

First off, take a few deep breaths, and tell yourself that you will come out okay through this. Start today, with whats on your plate, and try not to worry about any of the build up that you feel like needs addressing, you will get there.

It sounds like you have had these issues for quite some time, and they've lined up some past history for you. Gluten intolerance, unlike celiac, is something that can't readily be tested on an ordinary blood test. But there are complete stool tests out there. I personally have found out what I am tackling by taking the GI Effects Complete Profile Stool test, through Metametrix Clinical Labs. www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects.

Despite what anyone says, the facts are out there, that alot of diseases (not all) are connected to the gut in many different ways, and in your case, you have already had a few painful episodes that prove your gut is connected in this.

Before looking into the test, I would really recommend you do a search on Naturopathic.org, and find a Functional Medicine Doctor that is a an MD (just like all of the doctors you are seeing), but is also open to natural, alternative, homeopathic and functional medicine treatments. Functional Medicine gets to the root of your problem, instead of consistently dousing you with pain medications and driving excuses into your head like "its just the way your body is" or "your doing this to yourself". Here is the link to search for a Naturopathic doctor in your area: www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects.

Don't listen to what anyone has to say, medical doctors prescribe medication that never TREATS the issue, but just masks it for the time being. What you want, after all of these years is a doctor who will sit down with you longer than 15 minutes and go over treatment options that may be of benefit to you: such as 1) food allergy testing 2) stool testing 3) colonoscopy/endoscopy and 4) diet + supplementation. There is always a time and place for medicine, especially when you are in a full blown attack, but the testing and seeing a functional medicine doctor will help you in the long run.

As long as you make sure a new doctor you find has an MD certification, you can trust that they have complete knowledge + more of how to treat you, like your current doctors.

You very well could have gluten intolerance. Gluten intolerance can manifest in the same way celiac does, without testing positive in blood tests! I didn't truly think I did, but I tested for it on the GI Complete Stool testing, and it came back positive! I have colitis/crohns and only recently started getting the worst joint pain, and my doctor told me to truly make sure I was avoiding gluten 100% and taking it seriously. So now I avoid any ingredients that contain gluten: barley, wheat, rye, gluten, malt, dextrin, brand, enriched/bleached flours, even flavorings like soy sauce, carmel sauce, chocolate liquor, etc. If you want to give it a try, test it out for a few weeks and see how you feel.

Likewise with other allergens: dairy, nuts, eggs, maybe even sulfur!

--

I really, really hope you take this as a form of help and decide to make some changes with what you're dealing with here. I hope I was of some help to you, if you ever need others to talk to, or me, I'm usually in the Ulcerative Colitis forum where its pretty busy! :)

I'm not sure of your location, but if you're in the northeast, there are sure to be some naturopathic doctors that will turn up in your search!
Meds: 2400mg Asacol daily
Dietary: Candida-Control Diet, Gluten-Free, VSL#3, Phytostan, ParaGuard, Similase, ADP (anti-fungals)
Amazing Herbs: Slippery Elm, Licorice & Marshmallow Root / Peppermint & Chamomile

Grad student, diagnosed severe Crohns/UC - Sept. 2011
In the past, SCD=remission, Metametrix lab tests reveal yeast overgrowth.

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 8/12/2012 8:48 PM (GMT -6)   
Stereofidelic89,
Thank you so much for all your advice! It really helped calm my nerves. More than anything I'd like to see a Functional Medicine Doctor, but unfortunately I am pretty poor and don't think I can afford to see that sort of Dr. That would be so wonderful if I could. I would also love to get acupuncture and get massages for my fibro, but can't afford that either :(

I've been doing so much research and I really have come to realize that I've been slowly killing myself and causing many of these illnesses all my life by eating the processed foods and using all the chemical-laden products. I've learned so much from documentaries like "The Beautiful Truth" and "Forks Over Knives", and reading books by Dr. Weil and others who recommend a whole foods diet. Because I've been poor my whole life, I have eaten a lot of fast food, processed food and whatever is cheap, and I know that all that stuff is jam packed full of horrible chemicals that are killing a lot of people. It's really sad. I really feel like I have to save myself, and when I am able to eat solid food, I am going to eat only organic, whole food, no meat or dairy, and all gluten free. I think that's the only way I'm going to live a healthy life. I am pretty sure I have a yeast overgrowth myself (I have many symoptoms of this) so I bought a gluten-free supplement for that, as well as some gluten-free high-dose vitamin D3 (my vitamin D is SUPER low). Right now I'm drinking these organic nutritional shakes ("Orgain") that are gluten free, so that's how I'm surviving right now. I can't wait till I can eat VEGETABLES! I am actually craving them now. Even though I've been so weak from not being able to eat, for the past week I've been getting on my treadmill for 20 min a day. I am hoping that will help get my digestive system moving. Over the past month and a half I've taken myself off all the crazy pharmecutical drugs I've been put on and I actually feel so much better mentally. I've been meditating and reading inspirational books. I'm just doing whatever I can to heal myself, body/mind/spirit. I am so done with being sick mentally and physically and I feel so strongly that the only way to feel good inside is to live/eat/breath as naturally as I can. No more poison for me!

Anyway, thanks for your advice. I wish you well on your journey to health.

Peace2u,
lovermoon5

Athena Noctua
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 8/13/2012 2:50 AM (GMT -6)   
Have you tried Palaeo yet...? If not, I suggest you try reading the Primal Blueprint.

I do have one question: - what on EARTH is "gluten-free butter"...?! Butter, last I checked, was made from milk (if you meant 'lactose free' - it doesn't contain any of that either!).

You should eat plenty of butter, if you find it doesn't upset you. Being a highly saturated animal fat, it's extremely good for you!

Go Primal. It's probably the most hypoallergenic diet there is...

And NEVER listen to doctors when it comes to nutrition - they've been brainwashed by the ADA...

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 8/13/2012 9:28 AM (GMT -6)   
Athena,
The butter I'm using "Smart Balance" says it's naturally gluten-free (meaning there's no wheat, rye, barley products it it).

I'll look into the Palaeo Diet. But if means eating meat, it wouldn't be for me. It seems that meat really disagree's with my digestive system. I can handle a little dairy like some butter, but red meat especially makes me sick. And I can't eat any kind of seafood. I'm looking into a more vegan diet.

Yes, I am really over mainstream medical doctors. Almost all of them seem to be pill pushers, which doesn't help me since I'm so hypersensitive to medicines. I learned in the documentary "The Beautiful Truth" that MD's in the US don't get much if any training in nutrition....only 3% if them do, and the ones that get some training don't learn much that is useful. It angers me that my endocrinologist, who sees hundreds of overweight people with Type II diabetes, has never in 4 years talked to me about changing my poor diet! I mean, come on! A lot of her patients can reverse their diabetes by changing their diets! She's only suggested gastric-bypass to me. If her patients just changed their diets, then she wouldn't be able to prescribe them her horrible medicines. It's really sad and kind of criminal if you ask me.

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1989
   Posted 8/13/2012 2:34 PM (GMT -6)   
lovermoon, thats great to hear your taking strides on helping yourself get to a better place! I hope you don't think I don't agree with medicine; I definitely do in certain times.

When diagnosed, I was going through extreme pain and 15bathroom trips a day, that required a few months of prednisone (since i've been done) and I'm still on asacol (5asa), but i'm slowly healing my body to allow the supplements and dietary changes help leave an effect.

I am totally understanding to the fact of being poor. I just graduated and I'm absolutely broke. However, my Naturopath MD doctor accepts insurance and some testing is covered, and whatever I pay out of pocket is totally worth it to me. :) I hope you can find someone similar.

I guess the best suggestion with any doctor is to make sure you're getting your blood work/levels done every 2 months or so, checking for Iron, Vit D, B vitamins, calcium, etc.

And if you work out, do yoga, meditate, need a pick me up, or feel light headed, Emergen-C makes great Electrolyte packets! I mix with water and they give me a little kick.

Athena is right about the Paleo diet being a good one, also the SCD, but in the very least, maybe you could try to just avoid and limit refined sugars and grains. Sugars are the most inflammatory food.

If you have yeast, garlic is an excellent detoxifier, even if you chew a piece a day, take a supplement with it or rub a clove on your feet, the skin absorbs it.

--

I'm 22, a grad student by the way, I've researched for a good while now, again good luck!
Meds: 2400mg Asacol daily
Dietary: Candida-Control Diet, Gluten-Free, VSL#3, Phytostan, ParaGuard, Similase, ADP (anti-fungals)
Amazing Herbs: Slippery Elm, Licorice & Marshmallow Root / Peppermint & Chamomile

Grad student, diagnosed severe Crohns/UC - Sept. 2011
In the past, SCD=remission, Metametrix lab tests reveal yeast overgrowth.

mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 8/19/2012 7:07 PM (GMT -6)   
Lovermoon,

When my gastro couldn't/wouldn't help me, I asked for a referral to someone who would and he sent me to a Continence Surgeon. My first thought was "WHY? I am not wetting myself!" But this guy deals with your bottom side..he did 2 tests one was called an A.R.M. ( or anal-rectal manometry) it required me to lay on a table and have a tube inserted into my bottom and they pushed air in, and did some other things...the second one was a defacography. I laughed when he explained it, he said "they will fill what looks like a caulking gun filled with barium and mashed potatoes"...he wasn't kidding! They put me on a table and took x-rays, then the nurse came at me with something that looked like a caulking gun..she inserted it and filled my bottom with it, and took another x-ray. Then they tipped the table up to standing, and put a potty in front of it. I had to sit on it and do what they asked while the machine took x-rays every 3 seconds.
The results: my large intestine was stretched out so bad from constipation, it died. So in January I had surgery to fix all of this..
I am not trying to scare you, I am just offering my experience, and an option that may help you.
Best of luck...And I do have Celiac also...so I can commiserate..
Celiac
total colectomy with ileo rectal anastomosis 1/12

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 8/19/2012 7:48 PM (GMT -6)   
MrsBugzy,
Omg, so sorry you had to go through all that! I appreciate hearing your story though. Although I think my biggest problem is in my stomach. My biggest problem is I'm having attacks similar to gastroparesis...if I eat food, it will sit in my stomach and cause a lot of stomach pain. Only weird thing is I can't vomit. I've heard most people with gastroparesis vomit eventually. I have to try to force myself to vomit, and not much will come up. But what does is usually undigested. And I get such bad stomach aches, even when drinking only liquids. I have to stay away from fruit juices, which is a bummer being on a liquid diet. Any kind of fruit or acidic drink causes severe acid reflux. I'm mainly surviving on these organic nutritional shakes. They don't seem to cause me much trouble. Also, if I try to eat something solid (about once or twice a week I try SOMETHING solid, like a couple bites of baked potato or a gluten free cracker) it not only sits in my stomach forever, but I feel it come up my esophogus, as if I at a huge meal and it can't all fit in my stomach...??? It's so bad I have gone off all my medicines because they won't go down my esophogus and into my stomach unless I eat something solid after to push it down. I have not been able to sleep much lately so I took a half an ambian last night and followed it with a small gluten free cracker. Later my stomach hurt SO bad! I think the Ambian caused the pain because the crackers don't normally cause that intense of pain.
 
Anyway, I've been gluten free for 2 weeks now and not much change. I tried to eat a blue corn tortilla chip last monday (gluten free) and within an hour I had a migraine headache and broke out in hives. I have been itching all over for the past week and my mental health has gotten bad. I was feeling so good the week before so I am suspicious of a corn allergy. I have made an apt with an allergist and I'm going to get tested for food allergies. My gastro tested me for celiac disease (only a blood test) and that was negative, but I still suspect a gluten intollerance so I've gone of gluten. But maybe it's been corn all along! Or maybe multiple food allergies. I can't believe I've been having gastro issues all my life (35 yrs) and no doctor has tested me for food allergies! I think it's about time for that.
 
I see my gastro this friday and I'm going to insist he do another endoscopy, but this time go past my stomach. The last endocopy he did (2 yrs ago) only showed that my stomach and esophogus was inflammed, which he attributed to my acid reflux. But it was after that endoscopy that these attacks got real bad. I think he needs to take another look.
 
Anyway, thanks for everyones advice! This is like a puzzle I'm trying to figure out. I hope I can find an answer soon!

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 8/20/2012 1:25 AM (GMT -6)   
Mayflower7,
I have already had my gallbladder removed, so that's one thing I know is not causing this. Of course, I have wondered if there was a complication with my surgery that might be csusing my issues (I had my gallbladder removed about 3 yrs ago, shortly before my major stomach issues started...)

I know I should find a new gastro...AND a new endo...AND a new PCP! They'rd all terrible, but I'm so afraid of having to start all over with new Drs who might be bad Drs as well! I guess I'm just tired...sick, tired, & scared. I really don't know what to do. I did get my PCP to (reluctantly) refer me to a rheumatologist. I'm seeing a new geyno this Wends & in a couple weeks an allergist to be tested for food allergies. I'm overwhelmed with all these Drs & all these tests, but I'm just hoping one of them will find the answer. I just want to be HEALTHY so, so bad....

mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 8/20/2012 6:09 AM (GMT -6)   
WOW! That is so much to go thru...here is food for thought: If something in your bottom is not working, your stomach can't process and empty. I know that was part of my issue. Right before I got really sick I was vomiting all the time, or just not processing the food I ate because there was nowhere for it to go :( So if starting at the top doesn't work, start at the bottom and work your way up :) Good Luck!
Celiac
total colectomy with ileo rectal anastomosis 1/12

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 9/18/2012 11:24 AM (GMT -6)   
My heart goes out to you, dealing with so much.

I agree with mrsbugzy. Sounds like a new doctor is in order. I was forced to start fresh with an insurance change and it turned out to be the best thing that ever happened to me. Yes, it is kind of a pain, but you never know. Right now you have terrible care, so a change may be an improvement. Fresh eyes on a problem is sometimes the best thing.
Fibromyalgia, Migraines, Gluten Intolerant
Current medications: Topamax, Maxalt, Wellbutrin

gus999
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/18/2012 9:44 PM (GMT -6)   
`Hi Lovermoon5,

So sorry to hear about all your problems. I registered just to answer your questions. Some of the advice you've been given is right, some of it wrong.
First, you could well have celiac disease. It can often appear as a neurological disease instead of or as well as a gut issue. You need to get ALL the various tests for it done as there can be false negatives. Also about 44% of celiacs are corn sensitive because of both cross-contamination in milling and because corn prolamin (zein) has similar amino acid sequences to other grain prolamins. You definitely need to avoid corn. The best way is to eat no processed food as corn is in everything.
Next I noticed that you had a bad time after eating potato tomato and peppers all of which are nightshade plants to which many are sensitive. Forget the allergy tests they are a waste of time and don't give reliable results. Try eliminating nightshades (including eggplant). Vitamin D is low in many chronic diseases but is the RESULT of disease NOT the cause. Do NOT supplement with vitamin D. You may well not be absorbing some other vitamins however. If you test positive for celiac I will give you more information on this but bear in mind that supplementing the wrong things can be counterproductive or pointless. Eg too much niacin or riboflavin could be a bad idea. Biotin could make acne worse. Zinc which is usually low in celiacs cannot be taken up until the gut is healed and will normalise without supplementation. If you are celiac it could take up to a couple of years for your gut to heal. But remember - DONT eat corn as well as gluten!
You might have a faulty pyloric sphincter which allows acid reflux. There is a new simple keyhole surgery technique which rectifies this problem very effectively in a 1 hr op
You MUST go and read the Marshallprotocol.com site and also MPKB.org and curemyTh1.org as you will see that many of your problems are likely MP (Marshallprotocol) related as your vitamin D level is low. Vit D is low in 95% of celiacs but DONT supplement it. If you read the MP sites you'll find out why. More anon.
Regards
gus.

gus999
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/18/2012 10:05 PM (GMT -6)   
PS. What am I saying! I'm falling asleep.That should have been esophageal sphincter not pyloric!
Gus

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 9/18/2012 10:12 PM (GMT -6)   
I'm really considering I might have Celiac. I said before that my gastro did a blood test for it and said it was negative. I saw a Rheumatologist last week and she mentioned that the blood test my gastro did for Celiac was borderline, and she didn't understand why he didn't retest me or do further testing for Celiac. She decided to test me again for the Celiac because she said a lot of my symptoms sound like Celiac Disease. She was also shocked he hasn't done a colonoscopy on me. I have wondered about that too.

I'm not too concerned about the results of the food allergy test. My allergiest is testing my blood, but they only test for the most common food allergies and I agree, they aren't very accurate tests. But I'm getting it done anyway. I'm doing whatever it takes to figure this all out.

about 3 weeks ago I saw my gastro again and he was really disturbed to hear I had lost 60 lbs in 2 months. He immediately scheduled another endoscopy and he found that my pylorus was tight. It wasn't senosed, but it was tight enough that he thought it would be a good idea to dialate it. He used 3 different sized balloons to stretch it out. He also saw that there was a lot of imflammation in my stomach and esophogus, like he found 2 yrs ago. So this time he took some biopsies. He called me a week later and said the biopsies didn't show anything except that my tissues were inflammed. But WHY is my stomach and esophogus inflammed? There has to be SOMETHING causing it!

I'm so frustrated with this gastro. He seems like an idiot. And he's so cold and gets easily frustrated. He got an attitude with my mom (who came with me to my last apt) b/c she was asking him if my fibromyalgia could be affecting my digestive system. Her gastro (who happens to be one of his partners) told HER that her fibro could affect her digestive system. My dr said no way...fibro doesn't affect your organs. After I came too after my endoscopy 3 wks ago, my dad was there with me and when my gastro came in to check on me, he was real dismissive of my father's questions. My dad asked him what do we do if she eats something and get sick again. He said with an impatient tone, "Go to the ER!" and walked away. Ugh. My dad was really ticked off. Luckily I was in and out of conciousness.

So anyway, I'm awaiting the results of my latest Celiac test. I don't put much faith in blood tests for Celiac because I have read over and over about false negatives. The fact that the test my gastro did was borderline intrigued me. I tried going gluten free for a week or two, but I didn't stick with it for the month. I need to try again. My gastro stretching my pylorus DID help me start eating a little food again, but it's killing my stomach. It's going down though, which is good. But I'm having A LOT of painful, burning diarrhea (gross, I know) and lots of stomach upsets. I really just feel like crap.

The nightshade sensitivity is interesting. I have always eaten A LOT of potatoes, peppers and such. I'll have to look into that. I will check out the links you left for me too.

Thanks for the advice! I need any advice I can get b/c these dr's seem so clueless & they're wasting my time and money and NOT HELPING!

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 9/18/2012 10:17 PM (GMT -6)   
P.S...also, about the nightshades (not even sure what all are nightshades!) I have been OBSESSED with tomatoes my whole life and before I got sick I always ate A LOT of tomatoes and tomato sauces! When I was a teen I even went on a tomato diet for 3 months and lost 50 lbs. I'd be SO sad if I was intolerant to tomatoes! But I know the acid in them can't be good for my inflammed stomach, so I need to stay away from them no matter what. Ugh.

gus999
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/20/2012 9:13 AM (GMT -6)   
Its really important you look at the links I gave you. Most chronic disease is caused by bacterial infection and one of the markers for this is Low vitamin D. Bacteria can disable the receptor that vitamin D normally activates. The vitamin D receptor (VDR) is instrumental in promoting the manufacture of antimicrobial peptides that the body uses to kill these bacteria. As a result your immune system does not function correctly and more and more bacteria proliferate and the composition of bacteria in the gut can change. Celiac disease is an autoimmune disease where the body appears to attack itself but in fact the damage may be collateral and its the pathogen that the immune system is attacking. Additionally, bacteria, notably vibrio cholerae, that gives one cholera, have an effect on the junction between cells (tight junction) in the gut lining, allowing it to open and allow bacteria and food derived substances into the bloodstream. Your body then reacts to these non-self materials by attacking them. The sensitivity to gluten may only be because its in the wrong place. Removing gluten from the diet will reduce the symptoms but it won't be a cure. However, the marshallprotocol is potentially a cure and you will find a huge amount of useful information on the site. Note this isn't alternative medicine - which incidentally is often nonsense - its cutting edge.
about 5 years ago I recommended the MP to a mother whose kid had many symptoms of th1 disease including severe myoclonic jerks. His doctors had tried everything. He recovered completey after about 18months on the MP.
Make sure you read the links.
Gus

lovermoon5
New Member


Date Joined Aug 2012
Total Posts : 8
   Posted 9/24/2012 3:51 PM (GMT -6)   
Gus999,

I am very intrigued by the Marshall Protocol but I really need to do more research on this therapy. The main website I looked at had A LOT of information & it's taking me awhile to go through it (I'm currently in college full-time, work part-time & do a lot of volunteer work so I'm super busy right now). I will say, the MP sounds promising, but I don't jump into something without thoroughly researching it. I have read on other websites that have reviewed the MP & say there are dangers (i.e. the risk of cancer in those who have long-term vitamin D deficiency, & the risks of long-term use of antibiotics. These critics say there is not concrete evidence that these T1 bacterias even exist, & there's a risk of being infected by known harmful bacterias when immunity to the antibiotics occur). It's hard to know what to believe so I need to research this topic as thoroughly as I can in order to make a well-informed decision. But like I said, I've very interested in the MP after what I've read so far, & I appreciate you recommending it to me! After I've done my research, I'll get back on this site & post my thoughts.

Thank you for taking interest in my health problems. It's great to get advice & feedback from someone clearly knowledgable on the subject.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 9/27/2012 6:18 AM (GMT -6)   
Marshall Protocol ONLY applies if your 1,25 Vitamin D (i.e., "Active" Vitamin D) level is High. Otherwise, it does not apply. An abnormally high 1,25 Vitamin D Level is caused by the malfunctioning Vitamin D receptor. But Most doctors do not do the 1,25 Vitamin D test, they only do the 25 Vitamin D test (which can be low, normal or high in those with high 1,25 Vitamin D levels).

Hormone problems - may need Progesterone to help balance out the high DHEA. Strongly suggest consulting a Functional Medicine specialist or Naturopathic Physician instead of standard regular Endocrinologist for this issue...most Endo's only know about Diabetes and don't really "get" the other hormone issues.

Gut problems - sounds like a combination of issues. Nightshade sensitivity, Celiac or non-Celiac Gluten Sensitivity, and possibly other allergies or intolerances. Yeast overgrowth, possibly too. And with gastroparesis coming in "attacks" like that, I've had this from eating sulfites. So you may have a sulfite sensitivity also. Molybdenum is a mineral that helps the body process sulfites, and also helps the body get rid of toxins produced by candida overgrowth. Also need Vitamin B12 (hydroxy form is best) to help with sulfite tolerance. A sublingual Hydroxy-B12 supplement is optimal, as the Cyano-B12 is more difficult for the body to use (body has to convert to hydroxy or methyl B12, and in those with sulfite issues, this conversion is usually messed up).

Ginger tea may help with the stomach issues. Ginger is a natural anti-inflammatory that can also help improve digestion and stomach emptying. Many people with gastroparesis (btw, the tests for gastroparesis are not very accurate) use ginger tea to help with nausea and indigestion.

Glad you found a liquid supplement that helps.

For the Bipolar, low dose (5mg) lithium orotate is superior to prescription lithium, if you are not toxic from the prescription variety of lithium. Furthermore, most depression related illness can be caused or made worse by Vitamin B Complex deficiency. Functional Medicine has discovered this connection and knows how to treat it. Tests are needed to determine the specific deficiency or imbalance, but I suspect in your case you need all the B Complex, given the digestive issues you have.

Suggest also looking into Methylation issues - methylation genomic variants can cause hormone issues, food intolerances, chemical sensitivities, and mental health challenges, among many other things. Dr. Amy Yasko offers a test for these genomic variants, but it is expensive if insurance won't cover out-of-network stuff. More info:

www.heartfixer.com/AMRI-Nutrigenomics.htm
www.mthfr.net/

The Dr. Yasko test (no doctor needed; finger prick test done at home): www.holisticheal.com/health-tests/nutrigenomic-testing

I hope this helps...take care,

So to recap, hormone issues, allergy/intolerance issues, Yeast/Candida issues, and I suspect nutritional issues are things to look into.

Strongly suggest a Naturopathic or Integrative (Functional) Doctor - they are much, much more interested in and knowledgeable about helping find causes and cures than regular MD's.
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.

sickgirly
New Member


Date Joined Sep 2014
Total Posts : 5
   Posted 9/1/2014 11:20 PM (GMT -6)   
Lovermoon,

This is my story and it is very uncanny just how alike we are.
As as mall child (3-4) I developed horrible tummy aches (burning in the upper stomach) I got the stomach viruses a lot, too. As a teen, I gained a ton of weight ( I was 220 LBS at 15) My periods were irregular and very painful. Was told I was pre-diabetic and had PCOS by an Endo. I too only had ONE cyst ever, and had it removed at 21. Then in my late teens, I would feel really bloated in my upper stomach area, I would belch a lot..A LOT! But it would taste like putrid, rotten eggs. This would make me gag violently until I was vomiting it all out (Vomit was usually yellow, and smelled like the rot, too) THEN the runs would start. It is unlike ANY diarrhea I have EVER heard of..It looked murky/slimy, and muddy- it was as runny as pee!. Also My stomach cramped badly and burned! It always lasts 24 hours, and leaves when I've emptied my tummy.After that attack, as I call it, I didn't have another for a few months...Then BAM SAME thing again. I wanted to die! I went to ER and they never heard of it, said it was acid re-flux which my PCP had been treating with prilosec for years! They sent me home. I started having blood(bright red/maroon) in my tools on other occasions not related to those attacks, DR. "Guessed' they were anal Fischers. Had ultra sounds checking on my Gallbladder and upper Gi- tests, all looked fine..So no answer. I have major medical phobia and panic attacks,depression and they love to blame it on that. BUT when does anxiety/depression cause rotten egg burps? I have it more often now that I'm in my 30's... the same thing..bloating, burping rot, and the worst runs. Last month I almost died. blood pressure dropped super low, cos the attack of the killer egg burps caused me to not be able to stop vomiting except for 2-3 mins. MAX! I was pooping myself and vomiting..Ambulance came and hooked me to I.V and rushed me to ER..DR. said "It's food poisoning", I've never heard of it presenting its self in sulfur tasting burps though. She never even took a stool sample. Now,after that, if I drink coffee then poop and wipe real good 2 mins. later, I get this slimy, clear/yellow anal discharge that leaves a puddle on my bed. I feel like I'm dying. I'm full on type 2 Diabetic now, and my Meds do not work. the DRs. are giving up. I have YET to have a GI doc do a endoscopy and colonoscopy. I have so many ailments...I too have fibromyalgia..BADLY! I'm bed ridden. My periods skip months ever so often, and I too have unwanted hairs growing on my body. As for food intolerance, dairy goes through me sometimes, other times I'm fine. And sometimes, after I take meds, I get yellow diarrhea right after and see the pills floating in the stool, which is weird cos it takes 48 hours right? I do have severe low Vitamin D it was "10" But I take vitamins for it. I live off crackers and mashed potatoes. Like you, Moon, I notice it is after I binge on food, or have chicken or too much fish, that the sulfur attack starts.
I get rashes that itch, but only in the sun. So here I am now unable to eat due to weird diarrhea and burps and I too, even though I need to lose weight, have lost 20 LBS in 2 weeks!! I'm feeling terrified and sooo alone. I want to die sometimes :( I really hope you are still out there, as I see this is an older post. one more thing...Why do we both have endo/fibro AND the sulfur thing? related? hmmmm.... eyes

Britnee
New Member


Date Joined Sep 2014
Total Posts : 11
   Posted 9/10/2014 7:27 PM (GMT -6)   
Hi Lovermoon. I am so sorry to hear all the thing that you have gone through. I to have been through a lot. Let me start off by saying, I honestly thought I was the only one who had PCOS! It is soo good to hear that someone else has it. I started developing hair on the sides of my face when I was 13, me and my mom thought it just might have been puberty. I then went to an endro when I was about 19 and was then diagnosed. I am on spirnilactone and have been on it for about 4 years and it has help tremendously. Anyways, I have recently been having trouble with my stomach also. Doctors seem to think that I have colitis. I am honestly scared because I have never had a health issue other then anxiety along with depression. I hae an apt with a GI tomorrow and I am really hoping that I get somewhere. I went to the ER this past Saturday and they thought that I might have had appendicitis. They gave me a CT and that came back normal. They said that there was nothing that could do for me. I felt think past couple of weeks I have gotten no where with any ER or hospital that I have been to. I have done my research on Colitis and all signs point to the symptoms that I am having.

I have a lot of bowel movement (usually flat and curly, if that makes sense) I also have some abdominal pain when I eat certain foods such as eggplant. I recently have had MAJOR bloating. My stomach is usually a lot flatter then what it is now. I have a lot of fatigue days and go to soft stool to totally constipated. Loss of appetite I have had also. I just feel that I am not hungry. But even when I do not eat I still have a lot of bloating. I cant seem to get any answers either.

I hope this helped a tiny bit.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1877
   Posted 10/28/2014 1:27 PM (GMT -6)   
lovermoon5
By now, I sure hope that you have found some new doctors and are making some progress to this awful ordeal. It sure sounds like you have a lot going on. If the doctors aren't helping, find new ones. I suffered (not quite as badly as you) with awful bouts of stomach pains for 15 years and was told it was IBS. In 2005, I had a ct scan that showed thickening and inflammation in my lower colon. A colonoscopy was negative. So, they sent me on my merry way and told me to eat more fiber. Finally, in 2008, another bad attack and positive ct scan sent me to Mayo clinic. Another scope showed I had inflammation. After 2 years of meds not taking care of the problem I had surgery and my stomach has been a-o-k since.
I have other auto immune problems such as RA and scleroderma of the skin. I have found that I should not eat nightshade, peppers, gluten, MSG or sulfites. This has made a big difference in the swelling in my hands and pain in joints.
Some people have problems with digestion after they get their gall bladder out. they get diarrhea.
Just take it one problem at a time. Going gluten free might be an option for you. I tried it and it years back and while it didn't help my stomach symptoms,. But recently stopping what helped my aches and pains.
Best of luck to you. I hope you can get some relief. It sounds like you deserve it. Don't let Drs. push you off and say it's in your head, or you are depressed, need a hobby etc........... I've had that happen too.....
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
seronegative RA, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid,
Positive ANA speckled pattern 1:180, high sed r

dancemusic
Regular Member


Date Joined Oct 2012
Total Posts : 21
   Posted 12/9/2014 4:43 PM (GMT -6)   
I see that your first post was 2 years ago, so hopefully you have found some help, but if not, don't let the doctors tell you it's all in your head! I went (and am still working through) a similar situation with a lot of complex symptoms (not the same as yours but lots of gastro symptoms among others). I'm sorry your ordeal has gone on for so long! I too got many doctors that just brushed me off and referred me to psychologists for several years. If there is any way you can visit Mayo Clinic (any of their 3 locations) I would recommend it. Diagnosis is their specialty, and they will set you up with as many different specialists as you need and run the full gamut on testing. In my case they found several things other doctors has missed or not tested for and took me very seriously. If not, I would look into gastroenterologists affiliated with university hospitals. This also doesn't mean that there aren't great specialists anywhere, as I have found many in my town that are not affiliated with any major hospital or institution. Hope you're feeling better!
Hashimoto's Disease, Fibromyalgia, GERD, IBS, Vestibular Migraines, Chronic Allergies, Inappropriate Sinus Tachycardia, Generalized Anxiety Disorder & OCD.

Meds: Zegerid, Xanax, Claritin, Zofran PRN & Carafate PRN.

Post Edited (dancemusic) : 12/9/2014 3:47:46 PM (GMT-7)

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