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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New To Gluten-Free
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Hi everybody. We are brand new to attempting to eat gluten-free and I have no idea where to start! Let me give you a little background to how we got here.

I have a son who is now 4 years old. We have struggled with constipation and other bowel issues since he was born. He has struggled a lot with potty training, but only with bowel movements. I decided to figure out what was wrong this last year as he would cry while sitting on the toilet that his 'poop was stuck' and beg me to 'get it out' for him. Basically, my son has one bowel movement a day, however, if he misses his daily BM, he becomes constipated.

We ended up at the ER this year because he was so constipated he was crawling around the house crying that his poop was stuck and it hurt, but he couldn't pass it. We talked to our local pharmacist and gave him an over the counter suppository and lots of Miralax. By the afternoon, there was still no change so we took him to the ER. Ironically, while waiting to see the ER doctor, he stopped complaining and crying. My son has a very 'oppositional' temperament and didn't want the doctor to touch him, so he was constantly wiggling around and wouldn't let her feel his belly. Basically, she sent us home and said he was fine. Once we got home, he again went back to crying and crawling around. Finally, he passed the largest stool that I had ever seen come out of a person. I joked with my husband about bringing the stool back to the ER doctor and leaving it for her with a note that said 'not constipated?'

While talking with a friend, she mentioned that milk and other dairy plugs her children up and I should try to take him off of dairy to see. I mentioned it to my doctor and he told me that he didn't believe my son has a milk allergy or intolerance because he would have diarrhea, not constipation. Well, I didn't follow his advice to do nothing, and I removed most dairy from my son's diet. (I say most because we would slip up quite a bit by giving food that might have some cheese or milk in it). But we did take out a lot of the dairy. We switched him to almond milk. Almost immediately the constipation was gone! My son started taking himself to the bathroom instead of hiding and his accidents greatly decreased (from almost daily to about once every other week).

We thought we had it figured out. Well, my son didn't care for the almond milk much (even when adding chocolate syrup to disguise the taste), and slowly steered more towards juices and water. After 3 months of decreasing his dairy, my son started throwing up in the morning. It was strange, he had no fever. His doctor said it was a GI bug that was going around and that it would last about 2 weeks. I didn't really buy it, but a friend at my son's daycare said her daughter was doing the same thing so I guessed he must be right. After 2 weeks of vomiting in the early mornings (usually around 4 am) yet no fever and feeling fine all day, my son got a fever and diarrhea. Again we went to the Dr. who said he must have picked up a new virus because his immune system was down. This was getting old. We were on to 3 weeks of strange GI issues! Interestingly, while the fever was there, the vomiting stopped for a couple of days.

Then the fever was gone and the vomitting was back--early morning, no other signs of sickness. Each day, my son seemed to be getting more and more pale and losing energy. The only change that I could think of in my son's diet was removing dairy. I thought that there must be some connection. We had been on this for 21 days. I went to the Dr. and told him I wanted an allergy test done immediately. We did a blood test and after a few more days, the nurse called and told me my son was not allergic to dairy. That was strange to me, because taking away dairy had 'fixed' the constipation issues. Well, I was ready to try anything, so I immediately gave him a glass of milk and pushed dairy on him for the rest of the day. He loved it. He missed having milk and ice cream, etc.

It was amazing, the vomiting stopped...but the constipation was back. We just had our appointment with our Dr. and he went over the full allergy test results with us. Apparently, my son is allergic to wheat. The Dr. wanted more blood to do a full Celiac panel. We are still waiting for the results from the panel, but in the meantime, I thought I might start focusing on a gluten-free diet.

I have never been one to read labels, and unfortunately, I am not much of a cook. I can cook, I just work all day and haven't been good about making nice homemade meals each night. :(

So, here we are. Brand new to the gluten-free idea, and no idea where to start. I do have 3 older children (ages 15, 13, and 10) who have informed me that they do not want to change their diets because of their brother. Any ideas of where to start? I have no clue what even contains gluten, or not! From reading different posts, I see that things I would have never dreamed of may have gluten in them.

Is there a Dummies Guide to Eating Gluten-Free?!

Sorry for the long post, but if you are still reading this, do you have any suggestions?

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So, here we are. Brand new to the gluten-free idea, and no idea where to start. I do have 3 older children (ages 15, 13, and 10) who have informed me that they do not want to change their diets because of their brother. Any ideas of where to start? I have no clue what even contains gluten, or not! From reading different posts, I see that things I would have never dreamed of may have gluten in them.

Is there a Dummies Guide to Eating Gluten-Free?!

Sorry for the long post, but if you are still reading this, do you have any suggestions?

First welcome to the forum! This is a great place to learn form other parents' experiences. Here is some threads to check to get you started:

Some threads with good info:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

I know it seems overwhelming right now, but that will pass. In time it will be come just part of your life.

We only have one child, so it is a bit easier on us, others will chime in on how to handle the multi-kid part of this. :)

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Is there a Dummies Guide to Eating Gluten-Free?!

Welcome to the forum L!

You're in luck...there is an excellent book entitled Living Gluten-Free for Dummies written by Danna Korn.

Jules Shepard also has a good one: The First Year: Celiac Disease and Living Gluten-Free

Sorry, I can't be of any help either on dealing with your other children. Mine are grown with children of their own. But there are a lot of parents on this site, who'll probably be able to give you some good ideas as to how they've handled it.

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You're in luck...there is an excellent book entitled Living Gluten-Free for Dummies written by Danna Korn.

I just found this one and have been reading it all morning! Very informative and helps me realize that others in our family should also be tested! My mother has ulcerative colitis, my oldest two daughters both have ADHD and ADD. Also my oldest has epilepsy which spiked when she was five and has kind of fizzled out. She is also on the autistic spectrum. I didn't realize all of these things can be caused, or at least affected by gluten!

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I just found this one and have been reading it all morning! Very informative and helps me realize that others in our family should also be tested! My mother has ulcerative colitis, my oldest two daughters both have ADHD and ADD. Also my oldest has epilepsy which spiked when she was five and has kind of fizzled out. She is also on the autistic spectrum. I didn't realize all of these things can be caused, or at least affected by gluten!

Glad you found it...it's an excellent book.

Yes, other family members should also be tested. It's amazing how many symptoms can be attributed to gluten. Check out this list. First time I saw it, it blew my mind.

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If you are still waiting for the celiac blood results, DO NOT START THE DIET yet. If the results are positive, the doctor will probably want to perform an endoscopy to determine if there is any damage (he/she may want to do this even if the tests are negative). Changing your diet before the endoscopy can compromise the results. Take this "waiting" time to learn as much as possible about the diet, try some new foods (find acceptable "replacement" foods) etc.

After testing is done, then start the diet. Hopefully you won't have to wait long since you have already been told he has a wheat allergy.

Yes, everyone in the family should also be tested.

Cara

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I know it seems so overwhelming at first! This board has been incredibly helpful to me. I have a 4 year old too and I know how picky they can be! Couple of things that he likes: Udi's bread (sometimes I do a "grilled cheese" using Better than Cream Cheese in the middle - it's dairy free), chocolate chip cookies with the recipe from Elana's Pantry website, the banana bread from Spunky Coconut cookbook, Envirokids Cereals, Van's Waffles, Applegate Farms hotdogs, and Ian's alphabet fries. I believe Applegate Farms also has some gluten free chicken nuggets. We also do a recipe with Namaste muffin mix where I sneak in some pureed veggies and mashed beans for protein. There are probably a lot of things that you make for him already that are either naturally gluten free or can be easily made gluten free by some simple substitutions (like using gluten free bread crumbs for regular).

If you have some time, and it sounds like you do if you decide to wait for the test results, then you can play with some recipes and products. Then if you have to make the switch you won't be starting from scratch. Because my son is on the gluten free diet because of autism and not celiac, we had the luxury of taking our time and experimenting.

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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
    • Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables.  As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.
    • What did you drink and where did you drink it?   NOTE if you drink something at a bar using their glasses your asking for trouble BEER IS EVERYWHERE in most bars and a CC hell.   If it was at home and a non grain based liqour then I would be really concerned that it might just be alcohol. I personally can not really drink much of anything any more. I love rum, and I cook with it sometimes in sautes. I also have rum extract/butter rum extract/and rum emulsion I use in shakes, homemade keto pudding/ mixed into dishes. and even add some to drink to give it a rum flavor lol.
    • I can only think of two things, 1 something you put on your potato was contaminated like the butter container could have crumbs in it or something like that as mentioned before, and you could be having a reaction to dairy or what ever was put in it.......IF it was just plain potato and you reacted with bloating and cramping you might have a carb issues, tad rare and most associated with additional auto immune diseases but could be in which case a diet of fats and protein would be your answer much like it is for me now days. What all have you eaten in the privous 8 hours including beverages, condiments, spices and foods?
    • They are gluten-free.  Did you use butter that might have gluten crumbs on it?  For me , it takes more than 2 hours to feel the effect of gluten- maybe something you ate before?  Maybe  stomach virus?
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