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
So sorry! I did not want to start an argument. I have just been very despairing about the treatment. I was taking a sugar-loaded version of Nystatin (used for infants with thrush, it turns out!) and I feel like I didn't make any progress for the 2 months I was taking it.
My die off has been worse over the last few days with Caprylic Acid, so I am thinking I am just very sensitive to the chemicals the yeast lets go of when it dies. I am going to have my doctor do a stool culture to see what we are actually dealing with now. Did I make it worse? Is it just the same? Maybe a little better?
That brings me to my next question....what type of stool test is best for detecting candida? My celiac panel was done by a blood test and that was conclusive. I am not sure the same is true for candida.
Thanks to all of you that have been helping. I live alone with this and the isolation is tremendous and painful.
Thank you so much for this information! I had no idea that the ignorance went as deep as you point out it has. I figured the manufacturer knew what they were doing. But your point about infants and thrush makes sense. They can't take pills and would spit out something bad tasting.
I have been good with the candida/no sugar or starch diet (not even diet coke and fake sugar!) and still felt badly. I was crying with frustration and fear that I would never get better. Driving my naturopath (who wanted me to only use garlic, caprylic acid etc and didn't know enough about Nystatin liquid b/c that's not her field) and my therapist insane.
I think I will stick to my naturopath's recommendations until I can get my GP to switch to the Nystatin pills.
It is wonderful to hear that you recovered and can live on the Celiac diet and feel well. I am aspiring to get there.
Thanks to you and to the other well-informed people on the forum. I don't know what I would do without all of you to help me problem solve.
I think you might be right. The pharmacist pointed out that the liquid Nystatin I was taking was 33% sucrose. The herxheimer reaction I got every time I took it could have been a reaction to liquid sugar.
I am going to have the format of the Nystatin changed to pill form and take the herba anti-fungals my naturopath recommends.
Does anyone else have celiac/candida success strategies they can share?
I was diagnosed with Celiac through a blood test along with candida albicans; my level for candida was +3.3 about 3 months ago. My Dr. put me on liquid Nystatin 1,000,000 units (about a tablespoon) 4x a day. I have been following the yeast and gluten free diet devoutly.
I am wondering 2 things:
Has anyone on this forum has had success in treating celiac-related candida with nystatin? As restrictive as a gluten free diet is, gluten free is paradise compared to a candida diet!
When/did those who took nystatin stop the die off reaction? 3 months in and I am still feeling the die off with each dose I take. (The naturopath, who is angry I am taking a prescription, just said I was "weird" and she'd never known anyone to herx throughout the whole dose.)
This is such a positive place to get feedback. I really appreciate anyone's help with this.
I have been off gluten for 10 days and on the elimination diet for 4 days; I am now taking supplements to balance out what I do not get in the food. I do eat chicken for breakfast with some carrots or potato. Or I mix up the Vital Clear I was given by the naturopath. For the immediate future I am eating only organic vegetables and lean meat. My appetite is still so off that I can't work up enthusiasm over any food, so right now one is as good as another. I am hopeful that will change.
My most painful symptoms are/were the skin burning, nausea, weight loss, and (emotionally painful) my hair falling out. The gastric symtoms were something I had grown used to over the past year and seemed to come and go. My skin is feeling meaningfully better and I had no PMS this month, so the 10 days without gluten is making a tiny difference even this early.
I found this website, http://jennifer-andrews.suite101.com/how-to-detox-from-gluten-a357043 and followed the instructions there since they were in sync with what my naturopath was telling me. What stuck out from the detox plan here was the sentence "avoid excess fat and sugar since the liver is working hard...." From what I read here, in the short term, fat and sugar slow the detox process down. (We would skip step 4 on the plan here because we will not eat gluten again!) So we are getting better, it's just that sugar and fat give our liver extra work to do.
Right now my main detox symptom is unbearable anxiety almost all day. I read here that such a symptom is common and I am trying to be patient. Reading the forum here is very helpful and I have friends who know and talk me through.
I am so sad to hear how tired and sick you are feeling! I have just been diagnosed myself and maybe have a few tips that seem to be working. My naturopath told me that right now our livers are working very hard to detox and that we need to be extra careful in the short term. Her suggestions were a very low fat, low sugar diet. Fats are sugars are processed in the liver--and our livers are already working over time! I find eating a piece of organic fruit sometimes kicks up some symptoms. I am trying to eat just lean meat and vegetables for a month. Even though the packaged, gluten-free cake mixes etc. are safe, they can exacerbate the situation just by being rich or sugary. They hopefully will be safe at some point soon, but for me not right now.
My allergist also told me for the short term to stop exercising. (I was running about 5 days a week about 4 miles each time). He said since this is a malabsorption condition, asking my body to run on what little it is able to absorb was too much.
This is just what is working for me, so please do not take this as medical advice. Check with your provider... My naturopath put me also on an allergen-free l-glutamine supplement. (Made from pea and rice protein). Here in Connecticut is is called Vital Clear. The taste is marginal, but I take it 2x a day like a prescription. For me, it has realy accelerated the recovery.
It isn't forever, (or so I need to tell myself now), but for me a strict elimination diet is what is working for right now.
Please know that we are all here and concerned about you. You are not alone.
I have found this forum so helpful, and I need to turn to you for advice about this. My dentist fitted me with a bite guard last summer. I love it. It's like a pacifier for me. But I know I've eaten gluten foods and put it in without brushing....My question--can I clean the dental appliance fully and continue to use it? Or do I need to have another one made?
My dentist, who says the dental plastic is not porous like kitchen utensils, says as long as I brush the bite guard with a gluten free toothpaste I should be fine.
Just some food for thought....My naturopath said that while detoxing from gluten to avoid also anything that was fermented. Sometimes olives go through a fermentation process, so she told me to avoid them for a month or so.
The skin burning was my primary symptom of Celiacs! It burned for me, just as for you, on my head, face and scalp mostly. The pain was unbearable. I once went to the emergency room for the agony (my first and only trip) because I knew that type of pain meant something very serious. I think presenting with burning rather than itching skin is why diagnosis took so long. Had I presented with hives or itching that might have been more in line with a traditional food allergy. My GP offered only to give me anti-depressants and did not express any curiosity about why my hair was falling out and my whole body sometimes felt like it was on fire, why I had so many gastric symptoms and why, at the time, I was bleeding rectally. Even when I scratched an itch, my skin felt like it was sunburned.
I have been gluten/casein/dairy/soy free for a few days now and the symptoms are moderating. With my naturopath's permission, I am taking an allergen free supplement to help heal my intestines and give my hair some vitamins!
Please keep heart! I am so glad you reached out! I believe my symptoms will slowly subside once my healing has some real traction.
Hi! I am new too. Like you, I have suspected something terrible for a while, but it is some kind of a relief knowing what is going on. Right now I am having withdrawal anxiety and some neurological pain. I am hoping they go away with a steady elimination diet.
Please take care and keep me posted on how you are doing!
I am having the same horrible anxiety symptoms now about a week off of gluten! I am drinking water, but confused about what is okay to eat. I read a gluten detox blog that said to initially avoid fruit and juices (because of the sugar) and anything rich with fat (like eggs or red meat) that might overwork the liver and prolong the detox. Any food suggestions for keeping the liver running smooth and the anxiety down?
Thanks again! I feel so relieved to have found this site....