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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.

Has Anyone Eliminated Food With Dyes(Yellow#5, 6 Etc).....
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13 posts in this topic

and what were the results? did you notice a difference in behavior? my ds sometimes won't pay attention in class, likes to do what he wants to do, a few days ago at recess when his name was called to line up he ran off, last night at the xmas program he kept bopping his head and making faces...at the end his teacher said he turned his back to everyone and was shaking his butt!(I didn't see that) he has had meltdowns but now it's not very often, most mornings he is not cooperative, sometimes telling him things like for instance, no we can't go to the playground right now....will just go in one ear and out the other and he asks repeatedly over and over! We have been taking him to a psychologist who has now said we don't need to see him anymore! DS's behavior has gotten better since last year, but in your opinion, is this typical 7 year old behavior? I'm hoping I can get DH on board with eating gluten-free but he refuses because it's "too expensive" I"ve already read about the positive changes in behavior when eating gluten free, but I"d like to hear from anyone if elimination foods with dyes has brought a positive change in behavior.

thanks!

ps my oldest son never did any of these things...that's why I"m not sure if it's typical behavior or not!

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Have you heard of the feingold diet? Dr Feingold did a study on the negative effects food dyes, artificial flavorings and preservatives had on childrens behavior. Google it! I can really see postive behavior changes in my children since we ordered the materials and began the diet! Ive even tested it back in and the old behavior comes right back. I'm also pretty certain that by "eating clean" it helped lead us to the trigger behind my son's rash(which he had for five years and it spread after starting feingold....but healed going gluten free).

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Thank you, I'm going to read about it...how long did it take before you noticed a change in behavior and what changes did you see? thanks!

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Pre-feingold my twins(boys) were getting comments sent home about inattention, forgetting homework, talking, etc. After 6 weeks (6-8 weeks of detox) my boys both made AB honor roll and no bad comments from teachers! At home I noticed less hyper behavior, they were just calm and focused! I also have a 4 year old boy....here is the true test ;) I noticed changes with him quicker. Before starting, he would want to stay up all night, argue with everything, angry with everything, fight with his brothers, hit, huge meltdowns over small things, and temper tantrums everyday. Those are all gone....well, he still irrataes his brothers but I think that's the "little brother duty" ;) I decided to

let them all have unapproved candy from trick or treating....wow, big mistake for me! The days

following this "great tradgity" were awful and more noticeable in my youngest. He started the throwing his self on the floor kicking and screaming tantrums over nothing, couldn't take "no" for an answer, and hitting again. This lasted a week.....I'll never do that again! :)

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I cannot have red food coloring because it has always caused my ADHD to become worse. Red was the first to go because of this and the fact that it makes my tounge feel weird (rougher?) along with a belly ache. The rest i tossed out on a just because basis.

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Yes, we did an elimination diet in June/July/August and cut out most food additives, as well as salicylates, amines and glutamates. Our diet was supervised by a dietitian and based on the Royal Prince Alfred Elimination diet. Similar to Sue Fengate's FAILSAFE diet. We saw some very striking results with reduced hyperactivity and better compliance also sleep was better. At this time, our son had tested highly positive for coeliac antibodies (TTG 262) and was awaiting biopsy. I did a literature search, and there does seem to be some evidence that coeliacs are more affected by the types of food chemicals that are eliminated by the RPAH diet protocol.

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The feingold diet also eliminates sals, msg, and hfcs. That's interesting about food additives and celiac. What made you test for celiac? Did you test after doing the elimination diet? The reason I'm asking is my son had a rash that spread while we were eliminating additives. He had the

rash for five years(dx as eczema, dermatitis, etc)

and the only treatment that helped was

eliminating gluten! The rash was gone in two

weeks!! I had him tested for celiac (tTG IGA)

and he was just under the weak positive(so it was negative)...but

we had been gluten free for two weeks (...I'm thinking we were actually eating alot less gluten because of feingold. No crackers, only cereal that was approved was a gluten free brand).

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Hi ampmomof3, bear with me, this turned out to be a much longer post than intended!

"What made you test for celiac? Did you test after doing the elimination diet? "

He was tested for coeliac antibodies as he started the elimination diet. Our dietitian was very clued up, noticed his big bloated tummy (which our GP just the week before said was "lack of musculature") and wanted to have coeliac excluded as a reason for his irritable behaviour,lack of sleep & digestive problems. In retrospect, we realised his bowel motions hadn't been normal for some time before this and his height gain had tailed off, all of which pointed to celiac disease.

"He had the rash for five years(dx as eczema, dermatitis, etc) and the only treatment that helped was eliminating gluten! The rash was gone in two weeks!! "

That seems like pretty compelling evidence of gluten intolerance. It might be worthwhile reading up on Alessio Fasano or Rodney Ford's work in this area.

"I had him tested for celiac (tTG IGA) and he was just under the weak positive(so it was negative)...but

we had been gluten free for two weeks"

I wonder if being off gluten may have invalidated the antibody test. Did you mention to your doctor that your son had been off gluten for two weeks prior to the test? I guess that you would have two options, either re-introduce gluten for some time and then test bloods again, or continue to eliminate gluten and observe symptom changes. Either way, it would be good to do proceed with monitoring from your doctor so that you have documentation (ie, height/weight changes, clinical observation of rash etc if you decide to stay off gluten). At this point it is totally up to you whether re-introduce gluten or not. This was something I didn't really appreciate fully when we were getting biopsies etc done.

"I'm thinking we were actually eating alot less gluten because of feingold."

Yes, I agree. I think that because the elimination diet cuts out a lot of processed food, the gluten content is much lower than a standard diet.

Another resource you might find worth looking into if you haven't already is www.fedup.com.au which has factsheets on food additives and the symptoms that they may cause and anecdotes from people who have tried the RPAH, FAILSAFE or Feingold. The elimination diet is a lot of work, and I hope that you see some positive results with behaviour to make it all worthwhile. Good luck to you with sorting this all out! :)

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We had a neighbor boy who had ADHD. He had to avoid all dyes and sugar. Those things hyped him up.

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I just thought I would chime in. Gluten Free junk and all ready made processed foods and flours are expensive. Gluten Free living is not expensive. I eat gluten and corn free and all organic and spend an average of $6.00 a day on groceries, supplements included. That is breakfast, lunch and dinner for one person I tend to engorge on nuts and I eat a lot of meats. If your family is full of junk food junkies it may be more expensive but you can save money by making things yourself.

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My son is on a gluten free diet for his autism, not celiac so our case may be different. We have mostly eliminated food dyes except the very, very rare occasion. I also have started baking sugar free at home (use honey, maple syrup, etc. for sweetener). I don't know that I noticed a big difference when I cut it out, but I noticed an increase in hyperactivity when we let him have it.

Lately I've been using a lot of recipes from paleo cookbooks. We aren't necessarily paleo, but all of those recipes are gluten free, sugar free, and mostly dairy free (we limit dairy). It might be worth checking out.

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I'd say if I had to guess sugar is the worst of it. Food dyes may contribute, but sugar and chocolate and food dyes make my son crazy hyper. I am the gluten-free one, but when he gets sugar and the above and lack of sleep and no exercise, he's a mess. Leke the others said, you can eat gluten-free for cheap. All our dinners are gluten-free period at home. The kids like eggs and fruit and ham, most breakfasts, all gluten-free. Fruit is gluten-free. You can eat reular bread and buy some for only him. Does he have celiac? But if you are going to make any change make sure he gets enough sleep and get rid of sugar and chocolate. That is worse than food dyes, I think.

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Just curious if removing starchy vegetables makes a difference also? If you go by the glycemic index starchy veggies like white potatoes are worse than sugar. The Harvard chart lists many more foods, this is just a snippet.

http://www.health.harvard.edu/newsweek/Glycemic_index_and_glycemic_load_for_100_foods.htm

FOOD Glycemic index (glucose = 100) Serving size (grams) Glycemic load per serving

VEGETABLES Green peas, average 51 80 4 Carrots, average 35 80 2 Parsnips 52 80 4 Baked russet potato, average 111 150 33 Boiled white potato, average 82 150 21 Instant mashed potato, average 87 150 17 Sweet potato, average 70 150 22 Yam, average 54 150 20

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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