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
Eggs, too. We removed eggs, although she will have occasional egg whites. She says it doesn't make a difference. She's just not a fan of eggs. We started with the top 8 allergens and started working our way through all of the trouble categories.
Yes. I forgot to mention elimination of soy, too. So, to sum up for those keeping score at home, we have eliminated:
Eggs (she will have occasional egg whites)
She seldom eats any nuts, other than an occasional pistacchio or almond.
I get that other food intolerances could be present, which is why I was so cool with trying an elimination diet. But I would view it as highly unsuccessful because her symptoms are not improving and her quality of life is low. We were very thorough and had her really just down to rice and broccoli and black beans and started reintroducing foods one at a time over a period of about 8-10 weeks.
She has been off of all of the above-mentioned foods since 1/1/13.
My 15 year old daughter was diagnosed via biopsy w/ Celiac when she was 9. She has been perfectly compliant with the diet because for the first time in her life she was physically thriving. I am confident, 100%, no shadow of a doubt that she continues to be compliant with the diet. She only has accidental glutenings maybe 1-3 times per year. We keep a gluten free house. She is an extremely sensitive Celiac (intolerant to Oats and everything).
Every time she eats, she feels glutening symptoms about 20 minutes later and always has very loose stools when she goes to the bathroom. A visit to her GI revealed low on vitamin D and B12 and possible signs of active Celiac in an endoscopy. Another visit to an allergist revealed no actual add'l food allergies. GI doc seems "stumped" and had no add'l suggestions.
...About 5 months ago, her Celiac symptoms began resurfacing with no obvious signs of glutening. Her acne flared up (ok, maybe normal for a teen, but otherwise had great skin), diarrhea and loose stools came back, started losing weight because everything she ate would make her feel crummy.
We did a loose food elimination diet and removed meat and dairy and made an appointment with her GI. He scheduled the full range of blood tests and another endoscopy to check things out. The blood tests showed deficiency in B12 and D vitamins and the endoscopy showed mild signs of Celiac (meaning gluten exposure). I may have been able to explain the gluten exposure because we *thought* she had been glutened some time in early September (this was early October when we saw the GI), but now it is February and I am completely sure she has had zero gluten exposure since then.
The doctor gave us no real course of action other than to see an allergist about additional food allergies. We did, and she came up negative. Nada. Zilch.
The problems persisted and we did a more thorough elimination diet. Keeping meat and dairy removed, she also noticed symptoms were worse after potatoes (but no other nightshades), corn (sorta, she says), peas, some nuts (peanut butter bad, almonds good).... But we have never reached a point where she feels "right" again.
I have made an appointment with a new family doctor (we needed a new doc and she hasn't had a well check in some time) and am hoping for kind of an overhaul/holistic approach, but hoping someone here may have had similar experiences.
I hate to worry about refractory celiac or IBD/Crohns , but egaads. The poor girl just can't catch a break.
Thanks in advance for letting me vent and for any insight.
My story isn't quite as drastic as yours, but my daughter who now has Celiac had many similar symptoms as an infant. I never really thought it could be a link to Celiac until she was diagnosed (she's 13 now), but she had horrible, wicked diaper rash as an infant. The blistering horrible kind you mention. Plus, she was a non-sleeper and didn't really respond to the anti-gas/colic stuff. I was a gluten-eater and I did breastfeed for the first nine weeks before she switched to formula. I can't honestly remember if she did better when she was just on formula before other foods were introduced, but I do know that the problems on her tushy persisted even after potty training (at 18 months) while she was eating gluten.
Her Celiac symptoms were basically all the secondary symptoms, with none of the super-skinniness and wasting that you see sometimes. She does have a flat butt, did have the Celiac belly (flattened now she is on the diet), skin rashes, bowel trouble, ridiculously long eyelashes, dark circles under eyes, etc.
I'm not sure how you'd go about getting an infant tested because testing so young can be unreliable, but I would be suspect that gluten is problematic. I wish you the best in your journey--I wish I had known then what I know now about Celiac and gluten intolerance (my DD wasn't diagnosed until age 9).
I completely feel your pain. Thankfully my daughter (also 13, 8th grade) does not get glutened as much as your son, but when she does (about twice a school year), it's a doozie.
The actual day of the glutening, she'll go to the nurse's office and call me to come pick her up. She's worthless because of the migraine, bloating, and superpoo. Usually the next day she feels well enough to go to school, but then she is super spacey and out of it for about a week.
THEN, about a week after the spacies end, she ends up with a wicked sinus infection which sometimes results in another 1-2 days of missed school and the work she has to make up to go with that.
She's never been able to make up all of her work without getting dinged for some sort of missing assignment. I'm hesitant to pull the ADA card because I don't want her to think she can use her disability to get out of class (she is a teenager after all). I could probably do a better job of negotiating these situations with her teachers, but I also know she does not like being singled out because of Celiac.
It's tough stuff, but your post really hit home for me (especially since we're into the sinus-infection stage right now). Ugg.
Breakfast is definitely the easiest. We don't do drive-thru or fast food breakfast, but we've had a bit of luck at places asking for fresh eggs (my daughter likes egg white omelets because she doesn't tolerate egg yolks so well). Usually gets bacon and hashbrowns with no problem. We tend to frequent places who do us right the first time so they get to know us and feel comfortable with what we order, and we almost always ask for a manager.
I usually feed gluten-eaters bbq chicken (I use boneless/skinless thighs and use Sweet Baby Ray's sauce) with white sushi rice (from my rice cooker), a fresh veggie like zucchini or whatever floats your boat and make a salad with lots of fixin's inside it.
No one has ever questioned it's gluten free status and it is very, very yummy and traditional.
We usually serve plain vanilla ice cream (like Dryers) for dessert.
Glutenfreeda makes gluten-free instant oatmeal. My Celiac daughter can't tolerate even non-contaminated oats (she'll eat a gluten-free oatmeal cookie about once a year), but my non-Celiac son likes to eat it and it's a low contamination risk in our gluten-free house.
There are different flavors and stuff. It's quite good.