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 agree with the above posters: we have three Celiacs in our household. Our out-of-the box thinking cardiologist Dr Gundry insisted we go 100% grain free and avoid nightshades after we explained some of one of our kids' symptoms persisted. we have followed an autoimmune paleo protocol very successfully and are healthier than ever. listen to your instincts, find doctors who support you or who at least don't fight you, be brave we have to be pioneers sometimes! good health!
we are a family of four with three Celiacs. We have been following an auto-immune paleo protocol for more than two years now and all of our symptoms are at bay. the paleo mom blog is my constant inspiration! we are all proud of how we are eating and wish you improved health!
Hi there! We also find that going in to a restaurant and talking to the Chef at 3:30 in the afternoon and then returning to eat on the early side ensures an AWESOME experience . We also tip REALLY well and return to the places I feel safe eating
Hi! You are not alone...I have a 6.5 year old little girl who developed tummy aches over 8 months ago. We have eliminated a TON of things and haven't found an answer yet. Here are some things that we did discover were triggers for "big" tummy aches (she has pain all day, every day though...). She did have a "KUB" xray which showed she was constipated and we have followed "protocol" very well on that front and still she has no relief from her pain.
- Ruled out gluten cross contamination (we have a dedicated gluten-free house because 3/4 of us have Celiac and we homeschool, so I know what she'd exposed to...). We confirmed this by doing another round of bloodwork
- Ruled out parasites (like Giardia) via bloodwork
- Ruled out fructose malabsorption by doing a lengthy (2 month) low fructose diet
- Ruled out SIBO (small intestine bacterial overgrowth) by doing a breath test
- Ruled out various things through an abdominal ultrasound
- Ruled out ovarian cysts through a lower abdominal ultrasound
Dietary changes we've adopted:
- No cows milk. Only goat milk products in moderation. We rely more on coconut milk these days when a recipe calls for something of the sort.
- No grains of any kind.
- No polyols (look up FODMAP) so no sorbitol and other "ol" ending sweeteners
- No avocado (a trigger food for her, interestingly high naturally in polyols)
- No nightshades (tomato is a BIG trigger for her). Between going gluten-free and nightshade free the good news is she has no muscle/joint pain.
- No legumes of any kind.
We have pretty much adopted a paleo - type diet.
Things I'm still sorting out:
- Does she have an egg sensitivity? (I did two weeks off with maybe light improvement...still deciding what to do next)
- Could she have a histamine intolerance?
- Is her gut flora ok? (We have added in sauerkraut and tons of probiotics...)
- Does she have an anatomical abnormality?
xoxo to you and your little girl...hope we both find answers soon!!!
You are a great Mom! I was CRAZY with the cleaning I did...I have those $100 slipcovers over couches I got pre-kids...sanitized them, put 'em back on. I replaced all my pots and pans, toaster, baking sheets, etc... I even emptied every cabinet, put down new contact paper, etc. Somehow a chocolate maltball made it through all of that...showed up randomly in the middle of a shelf one day!!!???
Do whatever is going to make YOU sane , keep your kiddos healthy, and keep your marriage intact . My poor husband had to even replace all his tropical fish food--it all had gluten in it. I think that for him was (almost) the final straw in our purging efforts. Remember to check things like the dog food too...
Also, I vaccuumed my car a gazillion times...no doubt kids drop things and there are sneaky places those crumbs hide...
Hi Lisa--the test we did was to have my daughter "fill" a bag by breathing into it every 15 minutes. We capped the bag and labeled it. I think it gets sent off somewhere--so I don't know the numbers yet. I was thinking about the poor company that does these tests and HOPES for a higher accuracy rate--which could be higher if the nurses administered it (instead of the Mom!). I was quite fine at it (really punctual, etc), but it makes me wonder...
On another note, our allergist had "heard of" histamine intolerance but "needs to read up" on it (and wasn't too keen on doing even that). However, she did say that putting our daughter on anti-histamines full time for 1-2 months is a reasonable and ok thing to do to see if she improves. She'd do the child dose of Claritan 2x a day.
Thinking of you! In our house we "fell" one by one -- first one daughter was diagnosed, then the second, then me. We ended up purging the house of all gluten. We call our house the "all-inclusive" dining experience and don't let anyone bring anything over. It's just simpler...
It might be good to have everyone in the family get the genetic bloodwork done: my husband does not have active Celiac Disease, but has an "adult-onset" Celiac gene. Our GI/Celiac researcher at UCLA, Dr. Harmon, suggests that if someone avoids or at least has minimal gluten there is a chance they don't trigger the disease.
All in all, for our family, we've decided it's just simpler for everyone to not allow gluten or outside foods in the house unless I've screened them. It is far less stressful and safer for all of us! Good luck!
As a quick update, we did the SIBO breath test yesterday at Children's Hospital in LA. Results due back Tuesday. Super simple test (the nurse had ME administer it...which was a slight bit annoying just because I'm sure it costs insurance an arm and a leg...). My daughter was a champ. Took about 2.5 hours all in.
Thank you so much. We are going to the allergist tomorrow...we'll see how receptive she is... (She is the doctor who did finally do the Celiac testing for my kids after I had asked and been turned down by the pediatricians for 18 months...so, I have hope!).
thanks Lisa! I'll take any/all links to this you have. A couple questions:
- I've read mixed reviews on the DAO blood serum test. Have you read anything definitive? What is your opinion?
- Have you read anything about doing a two week trial where you go on anti-histamines for two weeks--if symptoms go away (they are supressed, really), then go through the effort to do a low-histamine diet and eliminate offending foods?
Wow! This is an amazing perspective! Thank you! I'm going to go to the kitchen, eat some chocolate chips, do the dishes, get kids to bed and come back an re-read that! Thank you! I doubt we would have ever thought to look at the histamine list! She's still eating a tiny bit of chocolate, pineapple, and many other things on that list!
Avocado made her severely bloated, poor thing. Can't wait to get kids off to bed and research more! Thank you!
Thank you so much for your input. It's interesting, we see two specialists in LA--a GI pain specialist and a Celiac researcher. The pain specialist is also considered one of the thought leaders in SIBO in kids. From what I'm gathering, SIBO is typically an adult "term" and that there are lots of kids with undiagnosed SIBO.
We removed almost all the processed foods in our quest for finding an offending food group/ingredient. So far we have logged diet, found some offenders and have eliminated the following (without 100% improvement): gluten (she has Celiac and we have a 100% gluten-free home and homeschool so little if any cc), lactose, polyols, soy (including soy lecithin, etc), nightshades (tomato was horrible for her), avocado, canola oil, peanuts, some galactans (no soy, no beans, no lentils). Basically, we are on a low fodmap diet with additional restrictions.
What our diary is showing now that we've gotten to a level of whole foods/get rid of lots of stuff is that there is constant pain with flare ups that (in my opinion) are related to ingesting carbs (including rice). Other than pain, bloating is her main complaint with some harder stools (not constipation) when she hasn't had enough fluids.
The pediatrician has prescribed flagyl as the antibiotic to give her, but I'm thinking/considering whether or not we're going to give it to her.
We have a six year old who was diagnosed a year ago with Celiac. We were gluten-free and happy/no problems until about month 9 gluten free. She developed abdominal pain below her belly button which is moderate, constant pain and sometimes flares up. We have had numerous doctors visits (also with our Celiac GI) and are now embarking on an effort to clear up "SIBO" which is the current diagnosis.
Any experience with this? Thoughts? Suggestions on diet? What worked? What didn't?
You are a great Mom!!! You are asking great, smart, thoughtful questions. I had to go around LOTS of doctors to get my kids tested and eventually got in to see Dr. Michelle Pietzak at Children's Hospital Los Angeles (a huge drive for us and so worth it). Ultimately, our twins were diagnosed with Celiac (as I had suspected) and Dr. Pietzak insisted my husband and I get tested (turns out I am a classic Celiac case--I had lost total sense of what was normal for me...).
My BIGGEST message: go immediately to the very best CELIAC specialist you can find. This is such a tricky disease and even the experts are very humble about what they know of the disease (in a very good, inquisitive way).
My next big message is this: part of our jobs as parents is to teach our children how to take care of themselves health-wise. We have to sometimes endure uncomfortable things (bloodwork) in order to make good, healthy decisions for our bodies. We have one daughter who was a screaming nightmare to draw blood from (it took me and four other adults to do her second blood draw a year ago). Now she just sits on my lap and is brave. I trust both of my six year old girls to make healthy decisions independently now, even when I'm not around--not that the last 12 months were easy by any stretch of the imagination.
A couple of points I echo:
- Make a thorough list of all bloodtests to be drawn and get it done at once
- Yes, do the blood genetic testing
A gigantic reason to intervene (test) is that if you catch Celiac when the kids are young, their likelihood of developing an additional auto-immune disease. This is from the Celiac Disease Foundation facebook post this week:
Early diagnosis is beneficial! "Children who are diagnosed
between the ages of 4 and 12 have a 17% risk [of developing an additional autoimmune disorder]; from 12-20 years of age the risk goes up to 27% and an individual diagnosed above the age of 20 has a 34% chance of developing another autoimmune disorder." - The University of Chicago Celiac Disease Center
You and I, diagnosed in our 40s have an even higher likelihood of developing other diseases (because our systems have been taxed for so long).
Go get 'em! You're a great Mom and it's going to take lots of energy and hard work--and you're doing the right thing!!!