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
I'm just back from the Mayo Clinic. They ran some tests and I was shocked to learn that I have fructose malabsorption. I thought maybe I had a yeast overgrowth because eating sugar made me feel bad. It's a rarely tested for companion of Celiac/gluten intolerance.
I was told to go on a low fructose diet. I was surprised to see that a lot of veggies have fructose. Among them are onion and garlic.
If you've gone gluten-free and are still getting bloating, gas, belching, cramps, stomach pain, headaches, skin breakouts, or nausea, it's something to consider. The test is very easy for a GI to do.
Here's one more thing to consider. I ran across this info this morning. Take a look at the free peek of the book and read the intro. It may be one more piece of the puzzle for all of us to consider?
I hope the link works..if not go to amazon and check out the book: Earthing: the most important health discovery ever?
One thing that they stress with GAPS is the introduction phase. You may only do it for a very short time, but they stress that you shouldn't skip it. I never did it, and I think I may have to backtrack and do it? I've been gluten-free, dairy, and soy free for almost 2 years. The GAPS diet uses dairy and eggs which I am intolerant of, so I never tried doing GAPS or SCD, and they use stool consistancy as a guide to whether a food is well tolerated or not. I don't have D as a symptom, so again, the diet didn't seem like it was a good fit for me at first. I'm rethinking it. From reading through the GAPS diet site online they refer to page 95 in the book for those who can't do dairy, so I guess the diet may be possible for me after all?
One thing I would add...the eggs that you use do matter. Whatever they're fed comes through into the egg. Organic, free range hens lay healthy eggs, wheras those fed a heavy grain diet may give you a bad reaction. I learned that quite a while ago when they first came out with the higher nutrition Eggland's Best brand. It proves the feed affects the egg. I reacted badly to them when I could eat other eggs.
I also saw that they were recommending the diet for time frames like 1.5 to 2 years. When I first started on this journey like most peolple I thought I'd go gluten-free and I'd magically become healthy. The reality is, it takes a bit more work for some of us. I admire your wonderful will power in giving up so many foods (I still haven't completely eliminated all sugar and starch) and awareness that the food we eat drives our health. My best wishes to you!
This diet (GAPS)is basically the SCD (simple carbohydrate ) diet. It's also used for healing the gut. The main thing is to cut out sugar, chemicals, and starches. Use gelatinous bone broth to heal the gut and probiotics to populate with good bacteria. I think the books are helpful in that they give recipes and examples of what your meal would be. I use an L-glutamine supplement for gut healing as well. ( I had total villous atrophy along with ulcerations and had a lot of healing to do). It sounds like a good thing for you to try? It sure couldn't hurt?
A while ago on this site I posted a link to a site that I found which told how to have perpetual bone broth by slowly simmering a whole chicken in a slow cooker. You take some out each day and add more water as needed. If you add a teaspooon or so of vinegar it helps get that good gelatin out of the bones without giving a sour taste.
I tried to paste the link to that thread here. I hope it works? you might some helpful info in it?
As time goes on I'm getting more intolerances, so I know I need to keep working. I think I may go full on GAPS too?
I have an appointment at Mayo Clininc for follow up care next week. I have a lot of questions, and among them will be how to finally get my gut balanced and healed. A scope in December showed my villi appear to have grown back. The weird thing I've found is that Dr.s don't seem to want to make us well...they seem to want to squelch symptoms with drugs instead.
Ask for a SIBO test. It will check to see if you have a bacterial overgrowth. Sibo can make you react badly to a lot of foods. A HIDA scan might be a good idea too? It will test to see if your gallbladder releases the bile and enzymes you need to digest your food. If you are taking an acid blocker it can stall the release of bile too, which can cause or aggrivate some of your symptoms.
Are you keeping a food log? By listing what you eat including which seasonings you may be able to figure out other food intolerances. Some seasonings like seasoning salt contain paprika which can irritate gastritis. They may contain cornstarch too, which can bother some people. Avoid MSG. Write down any symptoms you get. Be mindful of how the main allergens effect you. You could have intolerances, which aren't full blown allergies.. but enough to give you reactions. By keeping a record you will have a way of seeing if there is a pattern or connection between various symptoms and foods, which can be tricky to figure out since many food reactions are delayed.
Try eating a few blueberries. They help heal gastritis. You could cook an apple with some blueberries and have applesauce, try a bit of sweet potato because they are very nutrient dense. Please stay away from artifial sweeteners too.
Take a good probiotic. It helps digest your food and helps your body use the nutrients in the foods you eat. It helps balance out the "flora" in your gut too. Don't expect drastic changes from the probiotic. They tend to work slowly.
Make bone broth to eat. By slowly simmering a chicken in water with a small amount of vinegar(1 teaspoon) the gelatin from the bones and cartilege will come out, but doesn't taste sour. This helps heal the gut.
Most of the corn has been genetically modified. It's been released into our food supply without studies being done to show it's safe. Many people are now reacting badly to it. I am one of them.
In my case I had bed reactions to corn flour at first, but could tolerate corn starch or sweet (fresh) corn. I then got intolerant of fresh, and have now resctricted my use of anything with corn starch. It's really hard to stay away from it completely because corn is put into so many things.
In general now, I stay away from anything that could have GMO (genetically modified organism) ingredients. It's hard.
Each of us is different, but iMHO it's best to try to avoid any contact with it if at all possible.
I was first DXed in July 2011. I started keeping a food log when going gluten-free didn't stop a lot of my weird symptoms and just kept it up out of habit. It's really helpful in figuring out some of the odd intolerances. Just last week I made split pea soup and found I was very depressed the day after I ate it. Skipped a couple of days and had it for lunch and got the same symptoms. While not life threatening or anything, it was interesting to make the connection. Without the log I don't think I would have made the connection?
I totally get how hard it is to live on a resticted diet. I basically eat Paleo, except I can't have eggs now (because the winter feed has soy and it comes through to the egg) or any dairy. I limit tomatoes and peppers because I know they can be irritating to my system.
Oh well...it won't be forever? We'll get ourselves healed and straightened out and then we can start adding things back!
I think a lot of the probiotics are the same? I was told at the Mayo Clinic to take one that contains lactobacilus acudophilos to keep yeast in check. Other than that, I'd say switch brands from time to time to get a balance of various strains. Some contain soy or dairy and I wouldn't recommend those.
Probiotic foods include those foods that are fermented. Kombucha tea, sour kraut, kimchee, keffir, Greek style yogurts that aren't full of sugar (if you tolerate dairy).
Green juices help replenish your digestive enzymes. They might help if it seems like you are digesting things well. If you are still having issues, I wouldn't overdo the fibrous veggies. Be sure that they agree with you. When healing some foods can irritate your system.
If you are having growly noises in your tummy it usually means your system is struggling with digesting..usually carbs. A digestive enzyme supplement can really help. I wouldn't take it with absolutely everything you eat, but if you are eating beans, peas, fatty foods, fibrous foods, they'd be a lot of help.
Healing can be a slow process. We stop eating gluten and think we are magically going to feel great. The truth is..it takes some time. You will have "up" days and "down" days. Keep a food/symptom log and if something doesn't agree with you, omit it, or limit it for a while. If you have a set-back, tell yourself these things happen, and try to do better.
Once the villi start to erode you won't be absorbing nutrients. Over time some symptoms should start to show because of that. Also, the hormone (cck) that tells your gallbladder to squeeze and pancreas to release digestive enzymes is made and sent from the small intestine. With damage there that function doesn't work..or doesn't work well. Other digestive enzymes like for digesting milk are made on the tips of the villi too, so if they're gone, you won't be able to digest milk properly.
With severe villi flattening you might also get proteins leaking through the wall of the intestine causing food intolerances.
Your symptoms could be severe or latent. Each person is different. For example, you could have joint pain, but not noticeable digestive issues. You could have mood swings, GERD, insomnia, anxiety, ect. depending on which vitamins/minerals you're able to absorb. It all depends on how much damage there is, if it's patchy or total, and for how long you've had the problem.
I think generally, when flattened villi are seen by an endoscope, it's assumed that it's celiac. If a person goes gluten-free and their symptoms don't improve, they start looking at other causes. Sometimes it's a combo of celiac and other intolerances, or yeast /bacterial overgrowth.
There's an article here on this site's info pages that tells of other causes for villi flattening. There are others too, that you can find if you type causes for villi flattening into the search box here.
I saw Dr. Murray after I was DXed and very careful about cc, but still had a lot of bad symptoms. I test negative in my blood work, but had total villous atropy. I found him to be pleasant and kind. I was also having neurological issues after getting "glutened" when I got there. He sent me over to the Neurology dept. They did a lot of tests, including some for balance. They did a LOT of tests, but didn't give me answers. They kept telling me I'm an interesting case. I felt more like a science experiment than a person with feelings.
That being said, Dr Murray did order a SIBO test. He said he thought I had a severe case. SIBO can mimic Celiac, and it's common for Celiacs to have an imbalance in their gut flora. Have you been tested for it?
Dr. Murray is open to looking into other causes for villi damage. I had gone to a couple of different Dr.s locally and they had very little knowledge about Celiac and other food intolerances. At least Dr. Murray has a lot of experience. If you decide to go..take along a list of symptoms/questions and see if you can get your records sent ahead of time.
I continue to flail around a bit. I'm super sensitive and cannot safely eat out anywhere. It just isn't safe for me. I also had to go all grain free, soy free, dairy free, and mostly refined sugar free. I live in Ohio and know it's hard to go to MN. It's expensive too. If you feel comfortable with your local Dr., I'd ask for the SIBO test and see what it shows. Mayo could be your "back up plan"?
Maybe try a Paleo diet for a while? It removes grains, some dairy, refined sugars. There are tons of recipes online and you may be able to get books at the library?
Please remember that healing is a slow process. You will have up and down days.
Keep a food log and note any symptoms.
Once you have done more healing you can add foods back in, one at a time.
It sounds like you may have another food intolerance? It's hard to figure some of them out. I hope you keep a food/symptom log?
Having SIBO can damage the villi and let proteins from foods leak into your blood stream. Those proteins are seen as invaders and your immune system flares. It may not show up on allergy testing. Mine didn't. There's just no good way to test for intolerances, so log helps sort it out.
I had a severe case of SIBO too. I was given a couple of antibiotics, but they didn't seem to help. There are many different strains of bacteria which are treated by various antibiotics. You may want to ask for a retest for the SIBO? It's possible you had more than one "bad" strain?
If you get retested be sure to stop the probiotics for 1 week prior to the test. Otherwise, continue to take them. Fighting off SIBO takes time.
Also, if your iron levels are dropping you may get anxietry symptoms. Just one more thing to be alert to. It could be that you aren't absorbing iron well, or you could have a small amount of bleeding somewhere? Ingesting a food that you are intolerant to can cause anxiety or irritation with some bleeding in the digestive tract. In my case I found that ingesting corn products caused those type of symptoms.
Good luck with your scope. I hope they can give you some answers.