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 use Calendula First Aid cream from California Baby for our kids. It works great. They have many gluten free products free of harmful chemicals too. Downside..it's pretty expensive. They have a website www.californiababy.com. I also sometimes just use coconut oil that I keep in our pantry for cooking.
I've read D'Adamo's works and find them interesting but still had questions. I do agree that one man's medicine is another's poison and regional influences & food eaten in those regions played a monumental role in developing the different blood types. I thought...Okay some blood types have evolved to digest grains, but they needed to evolve and adapt to them...they weren't in their diet prior to agriculture because grains and beans just weren't worth the effort and didn't taste good uncooked. It seems that grains came into the picture only when populations grew and there was food shortage. It took thousands of years for certain blood types to evolve to digest a food that is essentially designed to be undigestible (contains very tough storage proteins designed by nature to withstand the cold in order to grow into a new plant...not so good travelling throough the human's digestive track). So I guess I just question their usefulness in our diet. Especilly since now there is evidence that we need far less of them then previously believed. Granted I can't pretend to be an expert as I had a big struggle giving them up and still crave them. I just know it feels better if I avoid them and my daughter is healthier. She too had trouble digesting meats until we removed all grains (the fat digestion seemed to be a real issue). We eat very little red meat... mostly fish, poultry and lots of veggies and fruits. And I guess I'm not suprised, when I think of things from this perspective, that so many people have trouble with red meat as most cattle are primarily "grain fed" in today's world when their natural diet is to eat the grasses not the grain. They are fed the grain to "fatten" them up because it gives them the flavor the consumer seeks (which is basically the flavor of toxins accumulating in the fat of unhealthy cattle....UMMM sounds appealing huh?). Is the grain making them more unhealthy too, promoting more disease in livestock which is then treated with courses of antibiotic, etc. It doesn't seem too far fetched considering the damage gluten does to us.
I totally agree with you! It is not just your imagination. I really believe no one should eat gluten and I'll go as far as saying I believe no one should eat grains. I have read a lot about the Paleolithic Diet which essentially argues that our DNA is nearly unchanged since Paleolithic times (before the use of fire for cooking) yet we are not only eating foods that were toxic then (because these foods...i.e grains, beans, potatoes need to be soaked and cooked in order to make them digestible) we are eating them in obscene abundance laced with pesticides, stripped of all nutrients and processed into Toaster Strudels!!!! All ready to be MICROWAVED!
I look around when I'm in line at grocery stores and I obsess about how UNHEALTHY everyone looks as I overhear people in front of me discussing Ethel's diabetes and people in back of me discussing Tony's cancer. I can't help but peek in their carriages...only to find...you guessed it......TOASTER STRUDELS!!!! I want to get on the loud speaker and announce, "Put back the toaster strudels! They are killing you!" But I think they'll call security on me.
Okay it's really late and I need to remember...Gentle guidance...that's how you have to win them. I wait for the smallest opportunity to discuss what I've read when people are ready to listen. Many are, it's simply a matter of proper timing and not overwhelming them with too much info all at once. I have found that their are many people willing to discuss "Low Carb Diets" and this is my "in" for discussing the negative impact of gluten. I find I tune so many out when I bring up the subject of celiac. It's too unknown to them and therefore too difficult to grasp, the cancer subject scares them speechless, but the subject of weight loss in our vain society always makes for a lively conversation.
Our daughter Samantha was the same weight at 15 mos as your daughter. We had done a great deal of our own research after getting lots of strange blood results from a variety of specialists who could offer no real answers on how to HELP our daughter. She had extremely low neutrophil count (part of her white blood cells that help fight infection) which the Hematologist classified as "Autoimmune Neutropenia" and said she would most likely grow out of it by age six but gave no explanation as to how this occurs or advice on how to keep her healthy. By the way, he is very well known for treating kids with cancer and people travel from other states to see him. My sister died of leukemia, so going to this office was a CONSTANT reminder of that and I would get so emotional each time I had to bring her. It served as good motivation to seek my own answers to the questions we had. Anyway, we suspected she had a dairy allergy at first and took her off dairy. At the next office visit, following the removal of dairy, her neutrophil count was near normal. But her weight was still very poor and so I asked her pediatrician for a referral to an allergist since we were beginning to suspect that her food sensitivities went beyond dairy.
Well we waited a very long time to see the "highly recommended" allergist who disappointed us with his complete lack of bedside manner and disregard for our input. Then we waited weeks for the results. Samantha's tested negative for all the common allergens because her IgA was undetectable. The allergist said "although we tested for x, y, & z we cannot tell you whether or not she is allergic to them". He actually told me that her results looked like that of a malnourished child. Mother guilt set in....I was NOT starving my child. I struggled with her constantly to get her to eat. Eating was painful for her. She would get sores in her mouth (associated with the low netrophils...also with Celiac which I later learned...I get them too). I was soooo discouraged...I thought for sure we'd get some direction from the allergist. He did suggest we see a GI as it was obvious that the immune response was happening upon digesting certain "unknown allergens".
So we got that referral and the appointment was set again for a LONG time into the FUTURE. The pediatrician ran tests on her stool for parasites which came up negative. So we decided to take Samantha to Naturopath in the meantime. We were fed up with specialists compartmentalizing our daughter and failing to she her as a whole little person with systems that interact. Upon the naturopath's recommendation and our own research we decided to remove the gluten (& soy which also seemed to effect her) from her diet. Finally, improvement! She was having more good days. Less irritable, less diarrhea (she had been having an average of 6-7 poopy diapers daily), and gaining weight. At our next appointment with the Hematologist her blood counts (other than mild anemia) were also within normal range. We went a couple of more times to this office before seeing the GI...the results stayed & her neutrophils continued to improve.
Finally got to see the GI who reviewed all the info and was very open to our input and research. She could not order the endoscopy because she knew it might show a false negative but said she was 90% certain Samantha has celiac disease with IgA deficiency. Because we were finally seeing a weight gain she agreed not to gluten challenge her for the sake of the endoscopy.
At our next appointment at the Hematologist, Samantha was released! Her tests were completely normal including the anemia.
Still I could see that more improvements could be made with her diet. She seemed to be existing on rice, rice milk and any alternative gluten-free "Carb" she could get. The more ingredients the worse her digestion. Some of the gluten-free ingredients in mixes seemed to cause problems (esp. potato starch and bean flours) as did many of the grain alternatives (quinoa, millet). So I did some additional research and found info on the Paleolithic diet. This diet recommends eating only foods that could be eaten uncooked in Paleolithic times as foods such as dairy, grains, potatoes, beans, were not consumed because they are essentially toxic without a great deal of cooking or processing. It made sense and seemed to spell out all the foods our daughter was having trouble with.
Samantha now eats only meat, fish, veggies, and fruit (mostly organic). It cuts out the guess work and she is doing great. I'd even say she's getting a second chin. Still irritable at times (but it may just be the age and her temperament). We haven't seen a doctor since December! She poops 1x per day and sometimes even skips a day. Days seem long sometimes. I am constantly in the kitchen because she is always demanding food (catching up I guess) and when I get frustrated I need to remind myself that less than 6 months ago I was pleading with her to eat.
I am sorry this is so long but want to say...Please keep seeking those answers. When I felt hopeless our naturopath said to me,"Never forget, the human body has a remarkable ability to heal itself." It was such a simple statement but has kept me striving for the keys to health and not falling too deep into the disease mentality.
I am currently struggling with the same issue. My 22 month old daughter is "most likely" Celiac. We started her on the gluten free diet prior to getting the tests done too. Her tests showed IgA deficiency so this made her tests negative. However, since IgA deficiency occurs most commonly in people with celiac or diabetes type 1 her GI was able to tell us with a high degree of certainty (based on other factors as well) that our daughter has celiac disease but can't put the "official diagnosis" on record until the endoscopy is done. The GI agreed that doing a gluten challenge for the sake of the endoscopy at this time was not wise as our daughter was seriously underweight and had finally been showing improvement.
Then my husband and I were tested and all our results came back negative (also still waiting on results for our 4 year old daughter). I am pretty certain at least one of us carries the gene if not both of us. I have many of the classic celiac disease signs (short stature, digestive problems, recurrent miscarriages, history of allergies and family history of gastro & autoimmune problems) and my husband has a nephew with Autism and a mother with Fibromyalgia. I was gluten free along with our youngest daughter and feeling much better but decided to get tested and gluten challenged myself. I'm feeling AWFUL... all for negative results (processed by Quest which I've now learned is not welltrained at processing these tests). Now I wonder if I should continue to pursue a positive result while I'm still ingesting gluten. I read a lot on this board about EnteroLabs and people getting better reliability with these tests. I'm not sure I am ready to pay out of pocket to learn that I should avoid something I know makes me feel bad anyway. I might opt to order just the gene test figuring if the gene is there that will be enough proof for me. As for my daughter, I don't plan to gluten challenge her ever. I know I did it to test but I can't see the rationale personally. She was very sick and I do not want to do her body harm for the sake of proving her villi is flattened by gluten. Her GI is very understanding and I'm sure will help us regardless of our choice to forego the endoscopy.
It is unfortunate that we should need to go to these extremes to get PROOF. I have been trying to ask myself what is my own motivation behind trying to get the PROOF. I think it has more to do with trying to boost my self-control (a recovering cookie addict here) and proving to my family that it is not in my head (and that they too could improve their own health) than actually having it medically documented. I've been doing a lot of research on the Paleolithic Diet and the foods our bodies are designed to digest. From what I've read, I am now convinced that grains (amongst other foods: potatoes, beans, and dairy) are not good for anyone regardless of an autoimmune response to them. My daughter is doing so well on this diet. It is very limiting (only meats, fish, vegetables, and fruit) but very satisfying once you get used to it. When I stopped trying to substitute the baked goodies with gluten free alternatives and took all grains of her menu her health improved drastically and she is now gaining weight steadily. I am already a bit panicked about when she is old enough for school. Right now she doesn't remember what a cookie tastes like and is not tempted with sitting next to someone eating one but in a class setting when there are parties, etc.... I am so hoping people will be more enlightened about the dangers of grains before she goes to school. My 4yr old eats gluten free at home but she does get the goodies at school (UGHHH). I feel mixed about what kind of results I'd like to see her get. While I don't want her to be celiac disease, again it feels no one will take my concerns seriously in the schools or medical offices otherwise. I would like her to be gluten free regardless of her diagnosis.
Oh this crazy world. Hopefully, the Low carb craze is here to stay and people will start asking WHY these foods are so bad for you and concern themselves more with TRUE health than with simply losing weight. And maybe..just maybe...we as adults will begin to question why we are still feeding our children foods that are causing adults to become seriously ill and overweight. Why are we setting them up like this? It'll be a long fight though...these foods are so addictive! Sorry for ranting...
I'm new to this board and have some definite questions regarding proper testing. My 22 month old daughter is most likely Celiac. Her first year and a half of life was a blur of colic, chronic diarrhea and one strange test result after another with no real answers from the "specialists". Finally we went to a Naturopath who recommended a gluten/casein free diet and we finally saw some improvements. By the time we got referred to a gastroenterologist we had been through the mill with the Hematologist and Allergist. Because she had been on the gluten free diet for some time the GI could not perform the biopsy and we agreed not to risk her health by challenging her at this point. She was in the 3rd percentile for weight at that time and could not afford to lose more weight. Because she is IgA defiecient and had a number of other symptoms the GI said she could say with 90% certainty that she has celiac disease. She asked that we get the bloodwork done for my husband, my 4 yr old daughter and myself. We all went through our individual primary doctors and my results and my husbands results were both negative (still waiting on our other daugther's results). We had the tTG IgA, tTG IgG, Gliadin Antibodies IgA, and total IgA serum. Granted they were processed through Quest and by the looks of it people on this board have generally found them to be inferior.
I have done so much research on this subject and I highly suspect I have celiac disease. I also had poor weight gain during early childhood, am of short stature now, had recurrent miscarriages, the whole celiac disease bag. I as on a gluten free diet (which began primarily because I was breastfeeding) but purposely went off it for some time just to be tested. I was feeling so much better on the diet. It is my opinion that gluten (amongst most other grains and dairy) are not good for anyone but to say that in a carb crazy world is risking great criticism. I am willing to just go gluten free on the sheer fact that it makes me feel better, but I also struggle with the lack of validity the test results can give to back you up in the medical establishment (because "feeling better" is not enough proof that gluten free is healthier). And on some level (I know I'll get over this with a bit more time) I feel I need this validity with my family, many who suffer similar symptoms as myself but don't seem to take this seriously and keep asking me if my daughter will "grow out of it" because they think I am torturing her with denial of goodies (yet she doesn't even know what she's missing). I also feel I could use the validity for myself when I'm just dying for that cookie!!!
So my questions are:
(1) Does anyone here have a child with celiac and neither parent has positive results? Wouldn't at least 1 parent need to have the gene? And if that is the case wouldn't it be wiser to avoid gluten even if celiac disease hasn't yet developed enough to register a positive test?
(2) Has anyone tested NEGATIVE with EnteroLabs? From what I've read on this board it seems everyone gets a positive diagnosis from them (including spouses). While I'm the first person to believe that most, if not all the world should not be eating gluten and may in fact be intolerant of it, I question any lab that consistently gives the same results (positive or negative). Whereas, a positive diagnosis would make my life easier, I do want a legitimate answer. Guess I'd feel more willing to pay if I knew ocassionally people do get a negative results through EnteroLab.
I just want to be done testing whether or not I ever get a positive result. I am actually eager to get back to a gluten free diet. I am so incredibly irritable on gluten that I can't stand to be around myself.