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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
InterestsMusic (Listening and performing: flute, piccolo, drums, saxophones, recorders, the list goes on...), American Sign Language (Interpreting), Writing on my blog, Learning, Socializing, Fixing Computers (and being a Geekette), Helping People, and Daydreaming.
Kathleen and Kayo,
I was wondering the same thing. I have celiac and SIBO.
I wonder if perhaps one type of bacteria - the main classifications I know about are hydrogen versus methane producing bacteria - tends to have different preferences so that folks who have methane bacteria do better on SCD and folks who have hydrogen bacteria do better on FODMAP, for example? Just wondering. I have absolutely no idea.
But I too am comparing these two diets to start myself, and was noticing how they are almost opposite each other.
Check out Dr. Pimmental's info and you'll come up with some answers. Rifaximin is good stuff for hydrogen producing bacteria (the diarrhea type) but I was told by my GI motility doc that it's not nearly as effective for folks who have methane producing bacteria (constipation type). Both are types of bacteria that can be found in SIBO.
Are you making dietary changes (GAP/SCD or FODMAP) and/or taking probiotics along with the Rif treatment? There are a number of ways to go about it, but given the expense of the Rif, its good to consider how to MAINTAIN any progress you make during and after treatment to prevent relapse. Good luck!
Was diagnosed with Celiac 2010 (had started gluten-free diet 100 percent strict in mid-2009), and in 2011 was diagnosed with SIBO. Lived almost all my life with chronic diarrhea until several months after going gluten-free. Then after a few months, I had my first run-ins with constipation which was a new animal to me altogether. Its gotten worse and worse and now i have full-blown SIBO with methane producing bacteria (constipation-causing type...hydrogen producing bacteria causes diarrhea usually). celiac disease opens you up to getting SIBO. Yes, its very complex.
Ox On Roof... (why the name? you have me curious!)
Just wanted to say that reading your posts is entirely entertaining (perhaps I'm easily entertained...???? ) and I've been chuckling . Thanks for posting.
Having big time gut problems, we tend to be acutely aware of how emotions affect our GI system. I personally lived my whole life from childhood in school, through college, and in the workforce KNOWING that if I experienced almost any emotion rather strongly, I was going to have to make a mad dash for the loo and pray I arrived in time before the package was delivered.
Though I seem to handle mild excitement and happy feelings fairly well, I found that any negative emotions or startles were a big big problem. From the most to least problematic, being:
Startled/Surprised (typically by bad news)
I also have Generalized Anxiety Disorder, which certainly compounds the problem.
Have ya'll found some solutions or ways to manage these emotions so that they don't give you a full colon cleanse 3-5 minutes after they register in your brain?
Do you (like me) sometimes not even realize you were feeling ________ (insert offending emotion) until AFTER your guts have gone haywire?
Have ya'll done any reading up on research connecting the mind with the GI tract? Some doctors call the GI system the "second brain". Most of your neurotransmitters are actually created in your GI system too! (Lightbulbs going off for folks wondering why so many of us bad gut people have emotional/mental health challenges?)
Cheers! And thanks for the help and hopefully not-so-stimulating discussion, if you get my stink-free drift.
Hey, something caught my eye in the OP's post. You drink wine once a day or sometimes.
I've found it hard to find gluten free wine. Please correct me, others, if I'm wrong. But wine is very often CC and on the general no-no list unless you've DEFINITELY found a brand that is 100% gluten free.
Is it possible that this is a source of the problem?
To simplify, you may consider using Dr. Bronner's magic castile soap (unscented) for cleaning everything - it's made for cleaning literally everything and when I'm reacting to stuff, that's my stand-by for hair, face, body, floor cleaning, even laundry. Helps make the crazy itchies go away.
Read all labels twice. Sometimes ingredients change.
Can you eliminate ALL GRAINS from you diet for about two weeks? And just eat simple meats, fruits, veggies, salads (watch the dressing for hidden offenders!!!)? Even some naturally gluten-free grains can have easily been contaminated - where they were stored (shared silo with wheat), how they were harvested (same equipment in the field), how they were transported (truck), how they were handled in a warehouse (next to wheat? or in the grocery store in those bins with scoops...those are terrifying!).
If there is any CC left in your house after knocking out all of the above, hopefully a very strict food journal would find it.
I know next to nothing about thyroid and I've never heard of the LEAP MRT so will have to google that when I have time and am more rested and alert.
Glad you've gone gluten free. But so sorry you're having trouble. *Compassionate smile.* I feel for you.
So...you said you're cooking with butter and doing simple stir-fry sort of deals with fresh veggies. I do this a lot too! Oftentimes, to avoid the butter and dairy, I will use a Tablespoon of olive or canola oil. I don't know if those will agree with you, but if you think there's hope in using that in leiu of butter, that may be an option to consider.
Are you able to eat any meat of any kind? Protein seems to be quite lacking in your diet with no mention of it so far. For me, I really like red meat but I have to just about BURN it before my GI system is able to digest it. I do only a little better with chicken. I've started increasing the dose of my probiotics and digestive enzymes lately, however, and I'm seeing some improvements in how I digest meats. I also bloat a lot less with these meats than I do when I eat any carbs, fruit, etc. I hate seafood, but it doesn't seem like many people here have mentioned bad reactions to it, so that could also be a good source or omega-3's. With digestive enzymes, if you take them, don't take more than recommended because some have Hcl added to increase stomach acid to improve digestion...but too much of a good thing can go sour (pun intended).
Staying away from soy is just good nutritional advice in general. It doesn't do kind things to humans. Even moreso, it can throw hormones outa whack because it mimics estrogen. I cut it out and have been glad I did - my guts, face (acne), and joints all thank me.
Wow...hope things work out for you, dear. I know it can feel overwhelming (especially around the holidays!!). If you think I can help, give me a holla!
Oh my! I can't imagine what I would go through if I had to eat gluten again...or then again...I can but it's a hellish nightmare.
I don't intend to speculate or judge you as to the "WHY?"s of your decision to go back to a glutened diet. I'll just tell you a little about me and my experience, as it seems that's what you're looking for.
My wheelchair is in part a direct relation to Celiac Disease being undiagnosed for my whole life up till 2009...I started a GFD then and had gluten issues diagnosed in 2010. Gluten ataxia, GI problems, and emotional/mental health problems, EXTREME and debilitating pain, malabsorption issues...have come as a result of eating gluten and not knowing it was killing me (see my signature below).
I accidentally ingested gluten a few times after I went gluten free. I was still learning for a while, and CC sometimes happens. Anyways, each time I've been exposed again to gluten it's landed me in the hospital multiple times per incident. I'm not talking about eating a piece of bread either. I mean like gluten in a piece of lunchmeat or cc because the cheese was cut with the same knife used to slice sandwich bread. Those situations WILL send me to the ER. Hallucinations, difficulty breathing, heart palpitations, rhythmic muscle contractions (myoclonic jerks), major diarrhea that leads to dehydration for which I need IV's, fever, pain that leaves me bedridden for about 2-3 weeks, followed by neurological symptoms. My vision gets so bad that I cannot read because my eyes skip and I get nystagmus, I cannot drive, I cannot sit up in bed because I will literally fall out of bed because my balance gets that bad. I lose my coordination and cannot do simple things like pick up a cup in the kitchen without knocking it over or get my key in the front door to enter my house at night.
Since you're asking for honest answers, that's the honest truth in my case. GLUTEN CAN KILL ME. And if I had not gone gluten free when I did, I believe it would have only been a few months before I died. Again, I need not exaggerate here. It is what it is.
The long-term effects never fully go away for me. Once I've been glutened (even just one little CC on one day and not again!), it takes at least 4 months for me to recover, but I never get EVERYTHING back to the place I was before glutened last. I will lose something - the ability to read small print, the ability to drive at night, the ability to walk on uneven ground without crutches/wheelchair/walker, etc. I do not anticipate getting these things back.
I now have SSI Disability, because of all of the problems Celiac Disease has caused. Actually, I just got the letter this week. I work from home because I do not have the energy or pain tolerance to work anywhere else, and I work part-time. I'm glad that I can do that, though when I was younger I used to go to the university as a full-time student AND work part-time. Can't now.
Suggestions? Well, eat as little gluten as possible.
I hope you will have much better luck that I have. I know I'm a person who has VERY SEVERE reactions and I'm super-sensitive. Some people are sick, it seems, for a few days per cc incident (assuming they don't continue to eat it repeatedly, day after day) and can get back to "normal" or near-normal within 2-3 weeks. But I assume you already knew that. So I figured you needed to hear from someone in the opposite camp who never fully recovers from any amount of gluten.
Best wishes for you and prayers going your way. Sorry for your situation and the stress that must be involved. Keep us updated and I'm sure there will be people here to help you walk through it and give suggestions when you're reacting.
Oh...by the way....PEDIALYTE is a wonderful substance! Gluten free too. Walmart brand is cheaper (cheapest to buy in the liter bottles already made...funny...you'd think the powder would be cheaper!) and also gluten-free. When I'm having a lot of D and can't eat or drink much, I have to down the Pedialyte or my electrolytes will tank and I end up in the ER again. So....drink lots. No matter how much it costs to drink Pedialyte by the liter, it costs more to say Hello to the ER doctors.
Oh wow, that's interesting! I was using Trader Joe's toothpaste (trying to avoid SLS), and ended up with bleeding painful gums every time I used it! Maybe there's a connection here. I didn't want to go back to big-brand toothpastes, but I saw no other options. Interesting that someone had a similar reaction. Hmmm....Sorbitol?....
Cooking in a cast iron pan can also help. Whatever pans/pots you cook with...the metals in those pans and pots end up in your food to some degree, so cast iron can be really helpful for this. Of course, with a cast iron pan some people don't use detergent so be very careful about cc issues if it's always been YOUR pan.
I tolerate iron supplements some days better than others. Never quite know how it's going to "hit me". Introduced more red meat and eggs into my diet along with leafy greens to increase Fe, but ended up getting high cholesterol!! So....not sure what to do about that. My GI dog looked at me with big eyes and said, "3 months ago your cholesterol levels were GREAT, and now they're awful! What happened?! What goodies have you been eating?!" Surprised, I answered, "What goodies? I'm Celiac - I don't eat good tasting stuff!" He said, "Well you ate it so you should know!" *Shrug.* I wasn't eating THAT much. But...............
Nice to meet you. Glad you came onboard. I think more people need to know not only about Celiac Disease and Gluten Intolerance/Sensitivity, but also about gluten ataxia...as it's probably the only known reversible or at least non-progressive form of ataxia if gluten is eliminated 100%. I think there are lots of people out there suffering from the neuro effects of gluten's havoc that just haven't been presented with this information yet. Doctors...are even more clueless. So it's our duty to get the word out.
I know you'll find a lot of support here - I already have, and my "attendance" is somewhat sporadic.