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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help For A Family Of New Intolerances
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7 posts in this topic

One of the guys I work with just had his 10yr old daughter tested and it turns out she is intolerant to just about everything.  Now I don't always think that the bloodtests for sensitivities are 100% accurate, but he was told they need to cut out gluten, eggs, dairy, peanuts (and other tree nuts), and most likely soy.  This leaves them with very little IMO to eat.  I'm gluten free and semi-dairy free so I'm only a little bit of help to him.  I gave him this web address as a starting off point, but right now, their heads are swimming.  He has 3 other kids and they are trying to decide if they whole family should follow some of the guidelines or just the daughter.  They are seeing a dietician soon, but thought maybe I could get some other great resources from this group - this is always my first stop for questions since you all are so super helpful all the time.  I'm really just looking for ideas on what a 10yr old can eat with all this.

 

Sidenote - he didn't say whether or not the Dr. did a celiac panel.  I told him about it (had never heard of celiac disease before) and asked that he call the Dr prior to pulling gluten out of her diet.  The sheer number of intolerances suggests to me that there is something else going on.

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One of the guys I work with just had his 10yr old daughter tested and it turns out she is intolerant to just about everything.  Now I don't always think that the bloodtests for sensitivities are 100% accurate, but he was told they need to cut out gluten, eggs, dairy, peanuts (and other tree nuts), and most likely soy.  This leaves them with very little IMO to eat.  I'm gluten free and semi-dairy free so I'm only a little bit of help to him.  I gave him this web address as a starting off point, but right now, their heads are swimming.  He has 3 other kids and they are trying to decide if they whole family should follow some of the guidelines or just the daughter.  They are seeing a dietician soon, but thought maybe I could get some other great resources from this group - this is always my first stop for questions since you all are so super helpful all the time.  I'm really just looking for ideas on what a 10yr old can eat with all this.

 

Sidenote - he didn't say whether or not the Dr. did a celiac panel.  I told him about it (had never heard of celiac disease before) and asked that he call the Dr prior to pulling gluten out of her diet.  The sheer number of intolerances suggests to me that there is something else going on.

Meat, veggies, fruit, rice, quinoa, corn is a short list. You can do quite a bit with those.

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From experience I can say that with gluten and soy together that it is pretty restrictive, nearly to the point of whole foods or ridiculously expensive crap no one can afford. Dairy adds a whole other layer to that because what isn't whey in?

 

I'm going to agree though that there is quite a lot you can do with meat, vegetables and the available grains. You can suggest coconut aminos as a substitute for soy sauce for stir fries and after that I really can't think of any reason she'll be lacking.

 

And yes, I would prod him to push for that celiac panel and follow up endoscopy quickly. We all know the test won't be accurate if she's already gluten free so there probably isn't a whole lot of time for them to mess around with that and if they can get the blood draw done immediately that would be super.

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Intolerance testing leaves much to be desired.

 

Why did they test to begin with?

 

That diet is what we have followed with a few more. It's about cooking a lot at home but its manageable for sure.  Again, without knowing why they tested though, I would bet a few/most of them aren't an issue really.

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She has had behavioral problems for years - at one point he said they had her on Abilify, but decided that was a bit strong for a 9 yr old.  They are coming at this from a good place - don't continue to mask the problem...get to the root of it.  She has been very tired and almost depressed for awhile, which is why they had the tests done.  They went through standard pediatrician who specializes in dietary restrictions (which is why I was surprised she didn't run a celiac panel or blood vitamin/mineral tests).  Apparently this Dr is very in demand (they had the blood draw in August and couldn't get a follow up appt to go over results until this past Friday 11/8 - crazy!!)  I of course did not discount the Dr's opinion, but I did explain to him that a lot of this information is subjective and it would be in their best interest to get the celiac panel done now before they make radical changes to her diet (that way they can have the other kids tested if it comes back positive as well).  I was trying my best to help with recipes and food ideas, but I'm allowed dairy (in small amounts) and all my good recipes contain something she can't have.  Mostly need lunch ideas to take to school - poor kid.

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Desperate parents will try anything, I know :(  I just hate to see people restricting diets so much without a clear reason and scientific testing first to rule things out.  It's hard to get people to comply with these diets with no back up (from the patient to the families to the schools).  
 

 

Soy is going to be the big one. If they do decide to pull everything, that would be the one I would try to add back first as it will open up a lot.  Hummus with veggies, soups and stuff like that would be where I would start with for lunches.

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My daughter had all of those intolerances and more.  There is plenty to eat.  Can use coconut oil instead of butter.  Can pop pocorn in it.  Can eat sunseed butter on a rice cake, rice crackers, corn tortilla, gluten-free bread, etc.  There are all kinds of fruit.  Meat.  Now there is great dairy free and soy free cheeses.  Daiya is one such brand.  In a restaurant, safe choices would be a hamburger patty,fruit, plain baked potato, sometimes fries.  In a Mexican restaurant, beans, rice and corn tortillas are usually safe.  Often the meat is safe but you have to ask.  Have to concentrate on what can be eaten and not on what can't.

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