My wife has been sick for 2 years and doctors dont know why (stomach)?

[shauna]

so, so sorry to hear that!

First, something that might help you find something to investigate is to make a list of all her symptoms - try to find the technical terms for them. Like, low blood pressure is called hypotension, for example. Then google 'symptoms' plus terms like disease, or disorder, or auto-immune/autoimmune and plug in a few of her symptoms, in various combinations.

Often, you will get results for various diseases that may have some relevance to what she has. OR, you will find forum posts from people who have similar symptoms, and some of the answers they get may help you figure out where to go from here.

Some conditions I know of that might be worth exploring, at least.
1. Gasroparesis. This has to do with the stomach no longer moving foods along, as I understand it.
http://www.mayoclinic.org/diseases-condi...n-20023971

2. A mast cell activation disorder, or mastocytosis. These are conditions where the mast cells - which normally degranulate during an allergic reaction, can be activated by things that are NOT an allergy. And sometimes, they can degranulate slowly, so the body's reaction to these doesn't seem like an allergic reaction at all. It can cause diarrhea, constipation, vomiting, pain, nausea, inflammation, fatigue. Many people with this have pain all the time, have problems with TONS of foods and getting foods they can eat okay. Many have bone pain, too. Some have hives and anaphylaxis, and those are the symptoms you usually hear of if you look on medical sites for information, but many people with this never to rarely get those, or if they do, it's atypical so they (and sometimes their doctors) don't even realize that's what it is (like sudden nausea followed by diarrhea and then fainting - that is some people's anaphylaxis, where the fainting is their blood pressure dropping suddenly). You can live through anaphylaxis sometimes, in these cases.

Many people with this also have something called POTS (postural orthostatic tachycardia syndrome) or other dysautonomia type disorders. These often cause dizziness and fainting, if not caused by the mast cell issues themselves.

These are both considered VERY rare disorders (less than 200,000 in the USA, although experts who study them are postulating that they may be more 'rarely diagnosed' than as rare as first thought. The Mastocytosis society is a good place to go for some help in hunting down potential doctors who know about this - they are hard to find and quite literally, most doctors won't know what this is or even HOW to test for it, or how to read the results properly if they find out what the tests are. So you want an expert if at all possible.

The BEST sources of information for mast cell activation disorder (MCAD) or mastocytosis that I've found are actually facebook groups. They have, in their files sections, very good, thorough, and up to date information, and they are very active and people are very willing to ask questions and help you determine if this is worth exploring for your wife. And most people there are used to being chronically ill, losing weight, worrying about just surviving - you will find people who understand there, you know?

There is the mastocytosis society facebook page, a few on MCAD or mast cell issues, like 'Mastocytosis and Mast Cell Disorders-Integrative and Holistic Approach' and 'MCAD (Mast Cell Activation Disorder) and Related Conditions'

These may have nothing to do with your wife's condition, but perhaps at the very least, some information there may help lead you to something else.

3. Gluten free thing - if she's an undiagnosed celiac who is SUPER sensitive, she might be helped by a super-gluten free diet. This article talks about some folks who have this (she's have blunted or destroyed villi in a biopsy from an endoscopy, in this case): http://celiacdisease.about.com/b/2013/03...mptoms.htm

Also, did they check to see if she had a stretched colon or megacolon, by any chance? That can happen due to chronic constipation I understand, and keeps feces from moving along as it should, and there are treatments available. This link discusses children with this issue, but I believe a lot of the information is still relevant: http://www.virginia.edu/uvaprint/HSC/pdf/12012.pdf


Wish I had more for you. I was lucky in that I got sick more slowly; it took me over 20 years to find my answers (mast cell issues AND celiac disease). I wish the best for you and your wife!