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
My first doctor started throwing around the refractory diagnosis possibility very early too because I actually got much worse on the gluten-free diet (I have been dairy free for many years before I even knew what celiac was), but I switched hospitals to U of Chicago and we finally figured out that I have fructose intolerance (malabsorbtion in the proper term I believe). I have had to cut out ALL fruit, the fructans group, and sweeteners. I pretty much only eat meat, potatoes, rice and corn very occasionally, and the non-fructan veggies. That has drastically helped my circumstances.Try a low fodmap diet with the slow reintroduction it may help. I also second getting checked for SIBO or just treating it if your doctor thinks that's ok. I tried treating the SIBO it wasn't my problem but it helped me know that was not a concern at the time.
Yes, for unknown reasons pre-diagnosis my Vit D levels were a bit high at 79 (I did not take any supplements and was not eating dairy so we chalked it up to being outside a lot and being very fair) now I'm nearly 90 and they've asked me to cut back on my new multivitamin, even though I'm low on other things, to prevent it from getting dangerous.
This is old but I know when people google these or search the forums there aren't always follow ups when the problem was solved. We solved my problem, it was not crohn's or hidden gluten, I have fructose malabsorbsion as well as bit of a sorbitol intolerance. Ironically I figured it out at the gluten free expo because most of the samples were sweetend with HFCS or Fruit Juice and it left me sick as hell since I wasn't eating processed food the samples wreaked havoc on my insides even more so than day to day eating. I met with my celiac specialist GI shortly after and she confirmed it. At 4 months post diagnosis my ttg IgA went down and was a weak positive and both DGP's went back to normal/negative so I am following the gluten-free diet carefully. It is not SIBO it's just fructose malabsorbtion. So I am now Gluten free, dairy free, very low fructose/fructans, low sorbitol/polyols. Within 24 hours of going fructose and sorbitol free in addition to gluten free and dairy free I was feeling like a new person. Thank you for all of the advice here. Hopefully if anyone pulls this up with the same situation this info can help them.
Sorry I didn't reply earlier I've been busy. My fiance, the twins's dad, went to talk to them when he dropped them off and they really felt bad about it and apologized he told them it's not the end of the world but it's just an uncomfortable situation and so they gave my kids beads to put on the necklaces. They are hanging but the kitchen door to the garage so we can see them every time we come home. They also had all of the kids plant marigolds and make cards super cute. I am no gardener I could kill a fake plant so I hope I don't ruin the marigolds!
ETA: Just FYI I did say in the original post I knew skin contact can't cause a reaction but I react when this sort of this just touches my lips and putting it on and taking it off puts it very near my lips so of course I didn't plan on "sucking on a necklace" but I'm extremely sensitive and react to contact on the lips even if I try to wash my mouth with antibacterial soap immediately...
My twins are in preschool and I volunteered the other day and noticed they made colored pasta but forgot to inquire about it. My son has NCGS but thus far I haven't restricted play doh, pasta crafts, etc but he reacted so this morning at breakfast I asked what it was and if they washed their hands well afterwards. My daughter wouldn't tell me and was extremely hesitant to answer what it was and it hit me it was a mother's day craft. I told her if she didn't want to tell me she could tell her dad and she did in front of me, which was super cute. They made mother's day necklaces out of dry pasta! The school and teachers know I have Celiac. I volunteer weekly there and I was very sick and when I was finally diagnosed they asked me all kinds of questions. I know pasta on the skin can't be absorbed but putting a pasta necklace on is just too much for me if it touches my lips while going on I will react. I cried realizing that my kid's made this for me and they wouldn't understand why I couldn't wear it. They know mommy is "allergic to bread and pasta" but at 4 that's about all they can comprehend. My mother's instinct tells me to just wear it and deal with the issues but the anxiety that is induced about wearing a ring of gluten around my neck is huge. I sent a tupperware box to school with instructions to place necklaces inside and wipe down the outside of the box and place it in my daughter's book bag only. Our entire house is 100% gluten free I can't have CC or crumbs from a shattered dry pasta floating around in my kids book bags.
This is the first time I've cried over my diagnosis. In fact I've often considered celiac the autoimmune lottery winner of diseases but this hurt so bad. Am I overreacting?
I am not sure how I didn't start cracking up right there but yeah scary how little people know about the things they are putting into their bodies. I am really getting good at not laughing in people's faces now a days!
I had costrochondritis during my pregnancy on the right side near the xyphoid process I think that's what it's called. It never itched but it hurt like hell. There was no external marking either just internal pain. It did go away.
To answer your question no I don't know any people with celiac disease who have not had a reaction after being gluten free and then again ingesting gluten. Everyone I've spoken too about this has had some reaction definitely not the same for everyone like me I do not get GI symptoms right away if at all but I get debilitating pain which can leave me unable to support my already small body with my legs meaning I can't walk and for some reason my body waits 6 hours past exposure to react. Other people just get gi problems, others may get both, even others may have seizures, etc.
I do however know people who had Latent celiac disease (which I assume you are referring to when you say different types of celiac which really celiac disease is celiac disease regardless of your symptoms damage is done) and went gluten free felt fine and did what you are considering and ate gluten their reaction was just as intense as mine and other celiac people I've spoken to. While the actual symptoms may be different the intensity seemed to be the same and very surprising to them since they had no classic celiac symptoms beforehand.
As for "different" types of Celiac disease I assume you mean the latent celiac disease and refractory sprue which in fact cause damage no matter the presence or absence of symptoms. But I'm wondering if you are referring to gluten sensitivity vs celiac disease vs a wheat allergy?
Those are all distinct diseases and are not different "levels" of celiac disease. A person can outgrow and allergy, celiac is an autoimmune disorder not an allergy, and gluten sensitivity is not well enough understood to specify what it is at this time. All they know is it's not the other two but it's real. The three illnesses do however all have the same treatment which is a strict adherence to the gluten free diet.
I hope that helps and I hope you understand the tone is one of concern not anger.
I had a waitress insist that the sauce in the lettuce cups had dairy in it. I knew it was dairy free and gluten free because one of the 4 times I've eaten out since being diagnosed was at this restaurant and discussed this with the manager and chef that it was gluten-free not contaminated and dairy free so I was confused as to why she insisted if had dairy. I asked her what dairy was in it and she said honey. I was like you mean the stuff from bees? Yup that's what she meant she insisted that honey was a type of cheese... Needless to say I ordered a piece of plain broiled salmon that was cooked on foil and nothing else to prevent cc and stupidity.
I think she got confused because vegans don't eat honey maybe? But the cheese thing?!
I think it's really a judgement call some well meaning relatives may not understand even if you give them a very informed run down. Some would be totally trustworthy. Restaurants a least reputable ones have to go by the health department standards and generally ones offering gluten free items have a special class or even sometimes a certification program they complete to ensure safety and complete understanding. But with that said a family member could do a better job at protecting you than a restaurant and vice versa it just depends on their level of understanding and cooperation.
My future step-niece in-law is gluten free due to an intolerance allegedly. She's not someone I would want to be friends with if it weren't for me marrying her step-fathers brother but she's family. Anyhow since I have celiac and my son is ncgs we brought our own food to Easter lunch. My fiancee went over to her to offer her some gluten free brownies since his family is not gluten free and don't really understand what it is. Anyhow FI told her we had brownies that were gluten free from non-wheat flour or something along those lines and her response was "Oh I can eat wheat just not gluten". After he came back (I didn't know why he went over to her at this point) I walked over to offer her our desert and she was eating a grocery store bought cake and looking at the lid and told her mom that she didn't even think the cake had wheat in it. It's a yellow cake from the grocery store bakery what does she think flour is? At that point I turned around without saying anything. When FI told me what she said it felt like a palm to face moment. I really don't know what she thinks gluten is and I think she must have the must brain dead doctor if he really told her to go gluten free but wheat was a ok. She said the doctor suggested it and then tested her celiac panel after going on her version of gluten free...
Also my future sister in law told me gluten free instant mashed potatoes where the worst mashed potatoes she had ever had. I told her I usually just made mine own and she asked how I was able to get the gluten out of potatoes. For someone who has no clue I cut her some slack but really it's in the news all the time even I knew fresh fruits and veggies were gluten free before I even understood what celiac disease was!
What kind of mind numbingly hilarious Easter conversations did you have?!
My celiac specialist dietician told me that most (not every single one just most) wines were naturally gluten free and really shouldn't be coming into contact with gluten UNLESS it's flavored. Any flavored wine or liquor should be avoided unless certified gluten free as it very well could contain gluten cross contamination. I think I am super sensitive I'm not 100% sure but other people with celiac disease that I have met have told me I am more sensitive than them and I do react to some "gluten-free" foods that contain 20ppm or less. Anything not made in a gluten free dedicated facility can result in a reaction for me but I usually drink wines from less prominent wineries not mass market wines so I would assume these places are just making wine and nothing else since they seem to be Napa wineries or European wineries.
Just an update for anyone who was wondering. My colonoscopy was completely normal so I was sent for a CT Scan to rule out lymphoma. I do not have lymphoma, however, during the CT scan they found inflammation near the end of my small intestine (not anywhere outside of the small intestine though) indicating Crohn's disease and recommended a colonoscpy to confirm. My GI, however, thinks the CT scan is a false positive because my colonoscopy was negative and has prescribed hysocyamine to stop the diarrhea. I am having a second opinion given by a separate hospital that has a highly regarded celiac program since I have many symptoms of crohn's including eye issues. I also dropped below the minimum sodium levels so I was tested for addison's disease too waiting on the results. My b12 also tanked and I am dumping more than half of my shot in 3 days or less so I was moved to every two weeks again. I think we are finally getting somewhere it's just slow going...
Thank you I know it takes a long time to heal but I'm actually getting worse when I was diagnosed I did not have daily diarrhea nor did I have stomach aches and pains now I'm up to 5-6 times a day and regular stomach pains. In addition to losing 7lbs in the first 10 days of going gluten free and not gaining it back. So rather than just feeling bad I'm worsening and it feels like it's happening quickly. I don't take supplements I was told to take them but I'm too scared they will have gluten and right now I can't add to my issues. I stopped eating coconut yogurt and it hasn't made a difference and I stopped the kombucha per doctor's request resulting in nothing. Every single food causes problems. There has not been one "safe" food that I can find. I just got engaged about 3 weeks ago and my ring fit that night now it's too big so even my fingers are losing weight. I was much better off pre-gluten-free diet but there is no way to go back now even a peck on the lips from someone drinking a beer 30 min earlier results in a glutening and I can't take the pain that that causes on top of worsening symptoms.