I wanted to drop back in and pass on what i've learned in the past year and a half since i started this "what's wrong with me?" journey. I thought I had food allergies/intolerances all my life - diarrhea when I eat has been my companion for 45 years. Digestive enzymes and probiotics have kept me alive and able to eat for the past 20ish years.
The post with most of my story is here: http://www.celiac.co...oure-my-people/
Nov 2012 I was tested for the celiac gene and antibodies. In a lab error, my blood sample was sent to 2 different labs - Prometheus Labs and Peace Health Labs. Prometheus Labs developed the tests, by the way, so are considered to be the most accurate.
Everything from Prometheus came back negative. The Peace Health labs were all negative, except the anti-tissue transglutaminase came back as a weak positive. I went gluten-free (100% and I am confident about that, right down to shampoo and toothpaste) for 7.5 months. No change in my digestive woes. Not worse, but not better, and my face was still breaking out (i'm in my 50's.)
After 7.5 months, I went to oregon's premier research hospital in Portland and saw 2 gastroenterologists. They said I didn't have celiac disease, that if i had, i'd have begun to see improvements right away. Instead they said I had IBS - which was the first time any doc had told me that.
Months passed and my youngest daughter's (20ish) digestive problems got worse and worse. She saw a naturopath, and in the course of her visits told her doc about me. The ND said it sounded like I had SIBO - Small Intestine Bacterial Overgrowth. I read about it on http://www.siboinfo.org and thought it sounded like me. I went first to my primary care doc to ask for the SIBO test, who sent me to a gastroenterologist, who said i absolutely didn't have SIBO and that i had a gut that "ran fast" just like some people's legs run fast. He also said if i'd had diarrhea for 40 years statistically, it wasn't going to go away. that was helpful, of course. I said "I'm not dead yet" and decided i wasn't done looking for answers. I made an appt with my daughter's ND 2 hours away in another town, was tested for SIBO, and it came back positive.
I took Rifaximin for 2 weeks, then started the low FODMAPS diet to starve any bacteria that remained in my small intestine. I'm on week 6 of the 12 weeks I need to be on that diet. I'm also taking low-dose-naltrexone (good reports on healing the gut with crohn's disease) and several supplements to help heal my intestines.
That treatment all started 8 weeks ago. I've now been able to eat the first two foods that i was ever allergic to. I have bacon every day - that allergy developed when i was 9. I have had 5 oranges now - and i've been allergic to them (i thought) since i was 15.
Everything says that this is working for me. All the evidence is that my gut was damaged by bacteria being in the small intestine, where it isn't supposed to be. Now that the bacteria is gone from there, my intestines are healing, which prevents food particles from leaking through my gut into my body, creating an allergic reaction.
I'm afraid to hope that it's going to be a cure for me, but the evidence says it might. I woke up on day 7 after starting the antibiotic feeling the best I have felt in 40 years. It was amazing.
I'm wanting to share this in case others of you, like me, don't get better on the gluten-free diet. If that's you, or it helped but doesn't eliminate all the problems, i hope you'll explore the possibility you have SIBO. it's a simple breath test to tell you if you have it. You can even order the test yourself, from Commonwealth Labs in Boston, and they will send you the results. For $175 you might get an answer. If a doc tries to check you for bacteria using a stool test, insist on the breath test. You can read on the siboinfo.org site why that is the only test that works to check if you have bacteria in your small intestine.
It is also possible to have BOTH celiac and SIBO.
People with IBS have constipation and/or diarrhea. The SIBO test measures for hydrogen (which is put out by some varieties of bacteria) and for methane (put out by other bacteria.) If you have hydrogen gas-producing bacteria, you have diarrhea. if you have the methane-producing bacteria, you have constipation. Methane has been shown to slow down gut motility by as much as 70%. You can have both types of bacteria.
There is also a suspected link between the endotoxins produced by the bacteria in the gut and Fibromyalgia. I don't have it, but i did have a fair amount of muscle pain - i just thought i was getting achy but i didn't know why. When i took the antibiotic, the muscle pain stopped. i used to go to the chiropractor all the time because my neck would get so tight and hurt - and it's completely stopped. no more aches!
My youngest daughter turned out to be negative on the SIBO, negative on parasites but positive on yeast overgrowth. She's now started treatment for it and we're hopeful for her too.
I have never gotten the help i needed for my gut from conventional medicine. This naturopath, however, has turned into a blessing in my life and now, i'm offering this as hope to the rest of you.
If you aren't getting completely better on your gluten-free diet, look into SIBO, parasites and yeast. I'd recommend the SIBOinfo.org website, the book by Dr. Mark Pimental "A New IBS Solution: Bacteria, the Missing Link" is about SIBO, IBS and why some things improve your gut but don't cure the problem. A good companion book is by Elaine Gottschall, "Breaking the Vicious Cycle."
It was about 20 years ago that doctors discovered that stomach ulcers were caused by h.pylori. Prior to that, docs thought they were because you were a type A person, told you to drink milk and calm down. Then they discovered the h.pylori bacteria and ulcers became treated with an antibiotic. Now, research has shown that many of the people with IBS diagnosis have bacteria in their small intestines, where they shouldn't be, which is called SIBO. Rifaximin is the antibiotic that is best to treat it. It's a hugely expensive AB ($1,025) but my co-pay for the whole 2 weeks was $35.
Hopefully, some of what i've included here will help someone else. Wishing all of you the best!
Please post if you have questions - i'll check back by and try to answer any.