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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sibo, Ibs, Food Allergies - Other Ideas To Explore
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6 posts in this topic

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.com/gluten-free/topic/99411-i-think-youre-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.   :angry: 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.  

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That's great that you found your answers! I agree that SIBO testing is a great idea for those who are having symptoms, I remember being tested when tested for celiac disease. I was fine but I am sure there are others out there that SIBO testing would help.

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Glad you are better! I was tested for SIBO when I had my endoscopy and colonoscopy. I am sorry that you had to suffer for so long.

The message for all is not to give up! It is not all in your head!

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OmGosh finding your answers is wonderful! I am so excited for you! Whoo Hoo!! Specially after suffering for so long. 

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Thanks - I'm now done with week 10 - 2 weeks of antibiotic + 8 of the diet.  I've been able to add rice back into my diet without problems.  Today I'm eating black beans and they also seem to be fine.  Four more weeks to go until in theory, I should be able to eat like a person without food problems!

 

I know you all get what a big deal it is to be able to eat more foods than you could before.  

 

My hope is that my story will also help give someone else avenues to pursue.  I'm impressed that several of you were tested - I don't know if i went to lame doctors or what, but the response I got from doctors over and over again was to just not eat what bothered me.  The trouble was that the list kept growing as i became more and more sensitive to foods that had previously been ok.  no one even suggested further testing for me.  

My best wishes to all of you - keep looking for answers to your issues!  No, your digestive issues are absolutely NOT in your head.    

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I'm glad to hear you are feeling better!  Good to know information.

 

The doctors that said you should have been feeling better on the gluten free diet (and ruled Celiac out because of still having issues) were not entirely correct.  There is a term Celiac Sprue ~ for diagnosed Celiacs not responding to the gluten free diet.

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    • Hi Michael and welcome The celiac diagnosis process can be a little confusing. Some time ago I tried to put together some info and links that may be of help:    The key point would be to stay on gluten until you and your doctors are satisfied that celiac has been excluded. In your case that may include another test with a more complete panel as CyclingLady says above. If you go gluten free independently during this time you risk invalidating the results and adding to uncertainty. The second suggestion would be that should you succeed in eliminating celiac as a diagnosis then you have nothing to lose from trying the gluten free diet. I tested negative on blood and endoscopy, but removing gluten resolved or greatly improved a whole load of symptoms including anxiety, depression and that feeling of not being right that you outline above.  I say greatly improved because I can still suffer from anxiety or depression, as anyone can, but if I do, they're nowhere near as severe as they were when I was consuming gluten.  In the meantime, one thing you could do is to keep a food journal to see if you can track any relation between what you eat and how you feel. It's good practice for if you later try the gluten free diet and you never know what you may learn.  This is a good site full of friendly help and advice. I hope you get the help you need  
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