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
Sounds like my health problems. I'll get all the symptoms for a problem and then have a test and it will turn out negative which is VERY frustrating. Meanwhile, my health just kept going down hill. It was only when I began this completely grain-free diet that things began turning around. I am now following the Gluten Free Society's advice -- stay away from all grains because 45% of Celiacs cannot tolerate corn, etc. Also, there were two studies that found that corn caused just as much damage to the intestines of Celiacs as did wheat. Anyway, I feel much better being grain-free.
I went grain-free 3 weeks ago. If you have joint inflammation, I also suggest you give up nightshades which is another common Celiac intolerance. Nightshades are well known to cause joint inflammation. Nightshades are tomatoes, potatoes, all peppers (except for black pepper and white pepper) and eggplant. I gave these up 2 months ago. As for cravings, you should see if the Whole Foods near you sells Fat Cat's Plantain chips. They are a great substitute for potato chips if you give up nightshades.
As for grain-free cravings: I make french fries at home out of sweet potatoes. I also make a strawberry "milkshake" (no dairy!) in the blender (1 cup of frozen strawberries, 1 ripe frozen banana, 1/4 cup almonds, 1/4 cup cashews, pinch of sea salt, 2 tablespoons honey and 1 cup frozen ice cubes. Put in blender and voila. If you are a Celiac who can eat chocolate, I suggest you get raw cacao from a health food store (its raw chocolate) and use one tablespoon of cacao instead of 1 cup strawberries for a chocolate smoothie. It hits the spot .
I have been eating salads with creamy cashew dressing (just like dairy) so I am not missing dairy or craving grains. I make the creamy dressing in my blender (cashews, garlic, black pepper, sea salt, water).
I am on day 20 and am noticing improvements. I would say I am 70-80% better. I have heard it can take up to 2 months to completely heal.
REMEMBER: If you go grain-free you need to stop taking ALL supplements that are not labeled corn-free and rice-free. I forgot about that part .
Oh, I experienced fatigue after eating rice, too. The doctors had tested my glucose levels and found that "all was normal." Yet, I would be too tired to do anything but sit on the couch all day. I've stopped eating rice and corn and all grains now and my health has definitely improved.
I stopped eating ALL TRACES of rice and corn and grains 20 days ago.
I can now eat:
Avocados (without getting diarrhea)
The reaction to these foods is 80% better. These are the only 3 foods I have tested (I'm too afraid to try others, LOL, because my reaction used to be so severe). Each day I notice a little more improvement. Also, I have always lost about 100 hairs when showering. Now I'm losing 6.
So there has been a HUGE improvement. I have read it can take up to 2 months to be able eat the harmless foods again once eliminating grains.
I didn't think I was reactive to nightshades but to error on the side of caution I removed them from my diet for 2 months. When the two months were up, I ate rice smothered in marinara sauce --- LOTS of marinara! I was on my 5th HUGE bite when I began projectile vomiting the marinara back up in the kitchen of my home. I actually felt my stomach squeeze shut, squeezing and ejecting all of the contents back up my esophagus and out my mouth. A week later, I tried to eat tomatoes again and although I didn't vomit, I developed horrible stomach cramps for 2 hours after eating them. I've never had stomach cramps in my life. The next day, I was one of the crabbiest people ever. Now I have learned: I act like I'm on gluten (mood-wise) anytime I eat tomatoes or potatoes. My joints also become sore. I now avoid ALL nightshades. I use sweet potatoes instead of potatoes. And I make cashew basil pestos instead of marinara sauce.
I would never have known that I was nightshade intolerant if I had not avoided them for 2 months and allowed my body to readjust to a nightshade-free diet. I highly recommend Celiacs trying this.
You must be one of those people who have undetectable or absent antibodies? I've heard that 1 in 500 people are this way. You are absent of IgG or IgA or something so all tests will be negative. I forget the proper name for it - I'm sure someone on this forum was know what I'm talking about.
How long has your family been on the GAPS diet and did they notice any improvement in sensitivities to other foods? Also, when they eliminated grains, does that include only taking corn-free and rice-free vitamins/supplements? Such as corn-free vitamin C?
Hm, I had allergy testing for $700 and they found nothing. Meanwhile, I was sensitive (NOT ALLERGIC) to over 30 foods because of Celiac Disease.
Doctors fail to educate their patients that a mere 3% of the population has allergies. Patients usually don't need a skin prick test or RAST test to tell them whether or not they get hives, a swollen throat, sneezing, watery eyes, puffy face after eating a certain food. However, over 20% of the population has food sensitivities - which is not an allergy. Symptoms of food sensitivities can be sleepiness, depression, anxiety, diarrhea, cramps (four hours later), vomiting, mood changes or feeling worse. If you have a food sensitivity, it will not be caught by an allergy test. I used NowLEAP's MRT test ($500) and it accurately caught about 14 of my food sensitivities (yes, I have a LOT). I had no idea that I was sensitive to broccoli, kale, carrots, but once I removed those foods from my diet, I did feel better. www.NowLEAP.com
It is also very common for Celiacs to not be able to tolerate any sugar but natural sugar. This holds true for me as well and it might be due to a cross-reactivity.
I, too, am becoming allergic to new foods on a daily basis. And yes I cannot tolerate any chemicals on my skin. They seem to be coming faster and faster as if I have not solved my case of leaky gut at all. I am now having reactions to all but 5 foods (ice berg lettuce, squash, nuts (but not seeds!) and some fruit). You might want to look into the Gluten Free Society's idea that 45% of Celiacs are truly gluten sensitive, not just gliadin sensitive. Gluten is found in corn (55% by weight) and rice (5% by weight). There have been two studies revealing that corn causes intestinal damage to Celiacs just as much as wheat gluten. When I removed ALL traces of corn from my diet for one month, I was able to eat nuts again (that had been impossible for over 4 years). I have heard that other Celiacs who are grain-free can eventually eat the foods to which they were sensitive. Also, when I was eating corn and rice, my skin sensitivities were beginning to drive me insane: My own jeans caused my legs to have hives, I would get hives in the bathtub (suddenly a sensitivity to soap??), hives to socks! AHH!
If you decide to remove corn, remember that it is in everything: Citric acid, xanthan gum, ascorbic acid, vitamins and supplements, even iodized salt. If you are really desperate, you may want to try a grain-free diet for 2 months and see if your health and sensitivities improve. Best of luck .
Are you buying eggs eggs from hens that were fed corn, soy and/or gluten? I have two friends who are corn intolerant (and Celiac) and who have a corn-reaction when they eat the eggs from hens fed corn. To eat eggs, they must raise and feed the hens a grain-free diet. I also know that several Celiac friends cannot eat meat that comes from animals fed gluten. So perhaps your children are reacting to the corn/soy/gluten, not the egg itself. The only way to test this theory is if you find a 100% grass-fed hen.
The only reason I started paying attention to the grain-free diet advocated by the Gluten Free Society was because I do have a gluten-like reaction to corn and I do feel better off rice, as do many Celiacs. When I include those two grains in my diet, my body continues to create new sensitivities as if I am on gluten. Also, my hair falls out on corn. I also think it is interesting that 5 years after adhering to a strict gluten-free diet, researchers find that Celiacs still have intestinal damage as if they are still on gluten. Yes, I agree, the Gluten Free Society is trying to make $$$, but the concept of the grain-free diet itself is intriguing.
I searched the internet for anyone who had tried the grain-free diet and I found several pages of note.
One blog is written by someone who was able to get their Crone's Disease under control following Elaine Gottschall's diet (no grains, no starchy foods):
And the second is the most interesting and is written by a Celiac who also took blood tests to measure IgG levels while trying the diet. He says:
"My IGG level dropped from the 70's initially [after beginning a gluten-free diet], but never got any lower than 33. My doctor suggested in 2005 that if the IGG level was still in the 30's after a couple years on the diet, it probably would not improve, and I most likely had some permanent damage from the disease that kept it still high. So I stopped testing at that point, deciding it was not worth the cost to track my progress. Out of curiosity, I decided to retest these antibodies again [after a grain-free diet] and to my amazement, my IGG level was at a 2, the lowest it has been since diagnosis and within normal range which is 0-19. This was exciting news.
Also, his absorption levels increased:
"Ferritin previously at 26 was now 73 (normal 10-291)
Vitamin B12 previously at 320 was now 451 (normal 211-911)
Vitamin D previously at 33.1 was now 39.2 (normal 4.8-52.8)"
His blog: http://www.pdxglutenfreenurse.com/2011/03/so-couple-posts-ago-i-mentioned-i-have.html
Then the third is a Celiac veterinary who learned that the Irish Setter carries Celiac Disease and that many other animals may be gluten sensitive as well. The vet then began putting his animal patients on a gluten-free, grain-free diet (corn is absolutely prohibited) and discovered it stops seizures and many other pet-related health problems:
The Gluten Free Society says that about 45% of gluten-sensitive individuals are sensitive to *gluten* (found in all grains), not necessarily the gliadin in wheat, barley and rye. There are also 2 studies that have shown that corn gluten does just as much damage on the intestines of celiacs as wheat gluten. Corn is 55% gluten by weight, while rice is 5% gluten. You might need to eliminate all traces of corn and rice for 2 months and then see if you have a reaction when re-adding them to your diet. I didn't have ANY reaction to corn until I removed it from my diet and then when I re-added it, I had the biggest gluten reaction ever. Corn is in everything, from citric acid, ascorbic acid to vitamins and supplements. If you decide to try avoiding all grains, Google "Corn allergy list" for a complete listing of contaminants. Best of luck .
Here is the video describing the corn studies: http://www.(Company Name Removed - They Spammed This Forum and are Banned)/video-tutorial/gluten-sensitivity-what-is-it/
Here are a few testimonials from people who said that the traditional gluten-free diet didn't work - they needed a completely gluten-free diet:
http://www.(Company Name Removed - They Spammed This Forum and are Banned)/gluten-free-testimonials/