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
Also thanks for the R.O.C.K idea! And the distraction method....good stuff.
And Cathy, good luck to you too. I've been stumbling along with this thinking that as long as he seemed healthy, it wasn't a huge issue yet. But I think after we get our own selves sorted (it was a lot of work for me, I was in bad shape!), we have to move on to the little ones. So this is all good info to be armed with. Hope you find your path free of too many obstacles.
Wow....thank you everyone for the wealth of information and incredible insights. Hearing concrete answers from others who have walked this road helps. Lisa, thanks for the list, I will copy it down and use it - he is still eating gluten regularly so at least there's that. And to everyone else, thanks for the encouragement.
I'm still not entirely sure why there is a discrepancy between docs/people who think the blood work and biopsies are an absolute necessity and those who say no. That's the only thing I'm still having trouble reconciling in my brain...I don't know which side to put all my faith in!! Even my mom, who is a nurse, is suggesting that I don't dare put my son through all that (bizarre - but then, she's in deep denial and refuses to think about how my diagnosis could affect either her or my father and didn't want me talking to my brothers about it at all). I find it very disconcerting that I can find doctors on both sides of this subject.
I'm beginning to develop my own, incredibly unscientific theory about all this: I'm beginning to wonder if it matters much at all if someone is positive or negative. Once someone in the family has come up positive...everyone else benefits from the new diet, period (and I'm talking about pulling the vast majority of grains out, gluten-free or not). Being Paleo has helped me to understand what grains do to our systems, all of them, Celiac or no. I envision a world not so far off where this becomes common knowledge and we look back on the strange time when the overload of grains was considered "normal" food and was making pretty much everyone sick. But even if my whacky theory were magically true (and trust me, I get that I might be in some early phase of understanding!), I would feel like a horrible mother if I don't follow common logic set up by the best doctors in the field. I thought mine was one of them, but I have to wonder now.
What would be a good resource for finding best doc for us in NYC? I feel lucky to be in such a big city, as I'm sure there are more than just Dr. Green here...(or should I just go there?).
Again, thanks to all for your packed responses. I needed the perspective!!
Hi all, I'm hoping some other parents who have dealt with this can shed some light for me. I was diagnosed at 46, but only through blood work (new doc, naturopath, he's celiac, he didn't feel I needed to go through another biopsy). Had a full work up 2 yrs prior (diff doc) because of crippling GERD and the blood work was negative, biopsies were negative, and they only found a small ulcer - no help at all. Since I've shown some of the more sideline issues since childhood (low immunity, sinus issues, heartburn, milk issues, depression/anxiety - none of the really obvious symptoms) and no doc has ever caught this, I'm just not feeling very confident in the process for testing my healthy child. I know the "gold standard" is the blood work and a biopsy, but I feel like I am constantly hearing about false negatives, and had that experience myself. (My biopsy and blood test came up negative 2 yrs prior to diagnosis, when I was had full on IBS for 9 straight months, was 105lbs and had GERD so bad it was like a heart attack! If they couldn't catch it then..).
Ok, so there's the set up - cut to 1.5 yrs later (doing much better, but finally went full on Paleo to get there) and both my Dr. and I felt like it was time to test my 7 yr old for Celiac. He's deathly afraid of needles and his ped practice is not so good at shots, so my doc said there was no incredible hurry if he's doing well. My son was showing signs of an allergy to milk, is super skinny (but that runs on both sides of fam), and eats a very gluten heavy diet (picky eater), occasional hives. All these things could be everything or nothing. So while my Dr told me he would test son for Celiac, the paperwork I received in mail was an allergy panel for the main 10 food allergies! While he showed a slight sensitivity to wheat and barley (not rye), there is nothing mentioning Celiac there. My doc tells me that he cannot "legally discuss the results" with me because my child is not technically his patient. This is all raising red flags for me, and now I'm at a loss for how to proceed.
So do I take this test to my child's pediatrician, who is famous (or infamous) for being very very "low intervention" (Dr. Cohen in NYC - has the book out that everyone had a few yrs back)? They already questioned my desire to test him after my diagnosis because he didn't "show any symptoms" (they clearly do not relate constipation/milk allergy/hives to Celiac or wheat sensitivity). Or do I go find a doc that specializes in Celiac, even though my child isn't showing any outward symptoms? It's a tough spot to be in: while I do not suspect that my child is a "raging" Celiac at this time, he could very easily have the gene and be starting up with a wheat sensitivity - and that would be horrible parenting to not rule it out. But to put him through a ton of tests with no "obvious" symptoms also seems strange to me, when there is such a seemingly high likelihood of a false negative (given my experiences, and he's related to me).
This is where some other parents might be able to help:
1. Is there any sense in just skipping to a genetic test (cheek swab test, I will just buy one myself) to see if the gene for Celiac is present? I feel like that test, combined with the allergy test showing wheat sensitivity would give me a clear path to take and we could avoid a potential false negative that blood test and biopsy might deliver. Or is this a false sense of security that the genetic test will be conclusive in determining that Celiac could be an issue down the line? If genetic test came back neg, I would probably do gluten free when able, but not be militant about it. And if genetic test was positive, I would do a full gluten free diet.
2. Since we are in NYC, should I just take him straight to one of the more well-known doctors who deal with Celiac? My fear is that they'll just skip right to blood test/biopsy...and given my experience with that, I'm not feeling confident it's necessary to take him there.
3. Or just stick with Tribeca Pediatrics (Dr Cohen) and hope that a well known Pediatrician will be able to track this and alert me at any critical point? They have referred me to an allergist...but again, as luck would have it, my personal experience with that was also horrible - I saw a well established NYC allergist about 9 months prior to diagnosis because I'd had chronic hives for 3 yrs running, and he sent me out of office saying that it was a "cat allergy" even though my test showed I was allergic to gluten and milk...oh, and I had non-existent levels of Vit D! At the time, that all meant nothing to me, but looking back, that seems almost like malpractice to mention all that as irrelevant to my health and simply curiosities.
So this is why I'm hazy on where to go from here...who to go to for help without going overboard for a kid that is happy and healthy. Do I put him through tests that might be unnecessary when there are genetic tests available and I have the funds to pursue that myself? Or am I placing a false sense of finality on a test like that? Where to start without feeling like I'm going overboard?
Anyone that would like to weigh in on this would be welcome...I know these are big questions. But I've been so focused on how to manage this for myself, I want to make sure I look at all angles for my son, regardless of my emotions surrounding the years of misdiagnosis I experienced.
Thank you all, hope to hear some interesting input....
It's a bit out of the way...Humboldt county. Will be there for a week at Thanksgiving, and given that it's such a health conscious place, I'm thinking they might have a number of restaurants that are either farm to table, or very Celiac friendly. Any help on how to go about researching? Any ideas would be helpful...not a ton of time to research, and my mom is very "fend for yourself" with the cooking....
Thank god, nothing major! I have been a bit foggy and tired...but that comes and goes so often (from being undiagnosed until 46!) that I can't tell if it's out of the ordinary or not. So...good lesson. It's not always going to be a major disaster. And read labels, even when it's soy milk.
How scared should I be? I cannot BELIEVE that a soy milk had wheat and barley extract in it!!! Damn Storm (sandy), I grabbed only soymilk that was left on the shelf as an emergency measure. Opened it, had one mouthful and instinctively knew something was up...that was a taste I had not had for probably over 2 yrs....barley malt. Looked at the ingreds and sure enough. You learn something new every day, apparently. Had no idea that a soymilk could be glutened. Shoot. How bad will this be? I have not had a taste of gluten, not even a grain, in over a year. Was never one to get super sick (it ate away at me slowly), but still.
I went probably 30+ yrs undiagnosed. Different times of extreme stress and then having a baby brought it on hard. When I first found out and eliminated all gluten, I noticed an increase in energy and stomach issues lessened a bit. But I didn't get a ton of relief with thyroid issue, itchy skin, carb cravings, etc. So after a year, I read some articles that introduced idea that there are glutens in other grains (like out of the 18 varieties of quinoa you'll find without labels as to which they are, 3 of them get a gluten response from celiacs). That was all I needed to hear and went completely Paleo. Since then, all my extra weight dropped off, my stomach flattened out and my entire body is "firming up"...it's not a fitness thing, I'm probably doing less now than before. It's a healing thing, everything just feels more stable and strong. I am not having issues with carb/sugar craving, I'm not having any stomach or digestive issues, no more crippling GERD (that didn't go away with just traditional gluten free), no more sinus issues, and best of all, my immune system is stronger. So there is a LOT to look forward to...be patient, and keep researching to see what's right for you. Everyone reacts to this differently (we are all completely different chemistry sets!), so you have to find the parameters that work for you! Good luck in your journey..
Not sure if you have a cooperative MD, but it could be helpful to do an in depth panel for allergies. Pretty common to find that a lot of foods you wouldn't expect are now allergies. I was lactose intolerant since college (46 now) and turned out it wasn't intolerant, was full on allergic. If you're really good with foods, you might be able to just do elimination and figure it out (I don't know how people do it, but it might be less $).
My son's friend's mom: " How are you? I know you haven't been well lately" Me: "Getting better, thanks. Found out I was full blown Celiac, so no more gluten for me. It's been really hard to get used to." "Really!? Because I went totally gluten free to get 'bikini ready' for our trip and it's SOOO easy!" Blank stare. (in my head: "Assholes wear bikinis??") Sigh. Celiac makes me cranky.
Question for you: are you eating many "gluten free" replacement foods? (ie: gluten free bread, gluten-free muffins or cookies, gluten-free pizzas, etc) I'll answer when I see reply, as it may not pertain to your situation!
This is so good to hear!! I'm so glad you've had that kind of luck!
I've been at this only 2 months, but can feel already that this was the correct road, and I started down it with intention of it being for the rest of my life - not a diet, not a fad. I've not been able to give up the sugar completely (and it's only hidden sugar in stuff like coconut milk and dark chocolate)...but am working on that, and was hoping I could kind of sidestep the strictness there (time will tell if that has to go too). What you just wrote gives me so much encouragement to look forward to a time when it doesn't need to be so strict!
But yes, strangely, the first 9 month of being gluten free were MUCH more difficult to do that Paleo....it was like eating was all about what you "couldn't" have. What "replacements" to make for "IT." I started to get depressed, even though some symptoms were lessening. Now, I'm enjoying food so much more...it's all about this amazing quality, and really FEEDING my body. Nothing that goes in should bring anything but health and joy - I think I cook more like a chef now, buy everything fresh and local and look for new ways to enjoy and prepare it. I have an indulgent treat (macaroons or dark choc) when I need so I don't feel like a total caveman... That's a huge change from the sugar and carb loving human I used to be. Maybe I'm enjoying some of those benefits that are supposed to come with age? ha. Hope so.
have a talented acupuncturist who adapted NAOT to her work (she has had incredible success curing food allergies)....uses muscle test for sensitivity. More than anything, I wanted to know how much worse it was than my allergy panel was showing (what about all the "pre allergy" sensitivities if i had THAT many allergies? I had a ton). Turned out, I was sensitive to every single grain she could test, so taking them all out made sense for me.
To everyone else - I probably should have indicated that this is being looked into when gluten-free diet does NOT work for people. I think there is a camp of believers that feel that all Celiacs should probably be off all grains, but I think they are jumping the gun ahead of the hard research (which is slow in coming, as we all know). Definitely some of us are finding this to be true, but if others are healing on grains, more power to them! (have an Udi's muffin for me!!) For now, I think it's something to be aware of, maybe look into if your symptoms are not alleviating and you think you could do it....but I don't think every Celiac should stop eating grains! (although, keep an open mind of you are not symptom free yet - if you would have told me I'd be doing this one year ago I would have broken a rib laughing so hard - and I didn't have all the regular GI symptoms that are easy to track, and Celiac went undiagnosed into my 40's with all the autoimmune stuff that's more elusive and hard to stop, and I am feeling a difference finally)
And for those who want to try, I've found no information that implies that grains are necessary to the human body (humans systems evolved NOT eating them, so it could be the predominance of processed and engineered grains in our diet since young age that could be the issue). So for those who feel they need to cut them, but worry about idea that they are hurting their health - the research I am currently finding would indicate that the human liver provides MORE than enough glucose to cover the daily needs of the brain...and the introduction of a LOT more in a grain heavy diet causes such an insulin reaction in the body, there is just as big an argument that it is bad for you. But we do tend to hear what we want to hear, so there may be other studies debunking this out there that I'm overlooking. ha.
Also interesting, is that I was only a "healthy grain" eater for the last 10 yrs or more....and that's when celiac kicked into high gear for me. So it wasn't just going from Wonder bread diet to Paleo...I switched from an already incredibly healthy and rounded diet with healthy meats, whole grains, fruits and veg, and felt a difference right away, so go figure.
From my understanding, absolutely. I was diagnosed only last year, but honestly, in my particular case, both my doc and I believe that Candida was my MAIN celiac symptom and complication (I was likely celiac my whole life, diagnosed at 45). I never had the typical GI symptoms, and I have dosed myself with sugar and carbs regularly my entire life (I was so elated that I was so skinny, yet could eat anything I wanted! ha, idiot.)
So, here's a suggestion. Since it's super clear that neither he nor his doctor will head in this direction, what if you pulled a quick one on him? Go get a big bottle of "Candex" and let him know that he takes 6 (2 hrs before food) in AM and another 6 at bedtime (2 hrs after any food)....tell him that you read a great article that this stuff can be a MIRACLE at dealing with itchy skin (it's a type of enzyme that breaks down the yeast cell walls and helps to kill it off without any "die off" symptoms). Just get it for him, tell him to try it for at least 2 weeks and see if he notices a difference. If he does, maybe at least this is a side route to getting him to unknowingly treat the Candida issue, even if he won't/can't address the Celiac issue. If it helps, he won't care what it is, he'll just take it. Don't even bring up Celiac again, just do it like it's a completely unrelated treatment for itchy skin.
So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?
(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)
Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).
My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?