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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.

Just Diagnosed. How Long Till She Feels Better?
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7 posts in this topic

My 10yo daughter was officialy diagnosed yesterday with endoscopy. She has been in severe pain for 7, almost 8 weeks. The pain has been made worse with the air introduced with the endoscopy yesterday, but that is improving. We started the gluten-free diet yesterday. She is still crying all morning. Plus she has a headache. I just need to know this will get better. I can't take the crying and the clinging anymore. I homeschool her and it is still difficult to get in a day of school. We also started with lactaid yesterday as well as a precaution.

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It gets better. Give her some slack while she adjusts to the changes her body will be going through as it rids itself of the poisons. You may want to lay off of the dairy products for awhile, as the part of the intestines which gets damaged by celiac also is the part which digests lactose. There are many different milk non dairy substitutes, such as rice milk, nut milk, hemp milk, coconut milk, etc. (just don't use the Rice Dream brand, which is processed with barley). Then re-introduce non lactose dairy such as plain yogurt or aged cheese s l o w l y to see how she responds.

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Hi Denine,

Some of the tips below don't apply to your daughter's situation, but maybe someone else will read the thread and benefit from them.

A simple diet works well for healing from celiac gut damage. Think of whole foods instead of processed foods. Foods that you would be likely to make 100 years ago. Kids are supposed to be able to heal faster than adults. But they can't heal if they are exposed to gluten, (wheat, rye, barley). Also, some of us react to to oats the same way. So it is safer to avoid oats for a year or two before trying them.

Pepto Bismol coats the stomach and gut and can help a little with pain. Peppermint can help get gas out of the stomach. Sugary foods and starchy foods tend to make more gas. Plain old aspirin can help with pain also.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

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Thanks for the info. This is all new to us. Celiac was never on the radar. She started with stomach pains while on antibiotics for bronchitis. Everything that was tried was assuming they did something to her gut. We got into see the pediatric GI doc and she ordered all kinds of blood work. Test came back positive for celiac disease. She had the endoscopy yesterday and the biopsy was positive for celiac disease. We are still waiting for the allergy testing (eggs, soy and milk) to come back.

I have done a ton of research in the past week or so. I have had her on probiotics since she started the antibiotic. I also have her drinking Kefir.

The doctor said she may be slightly lactose intolerant so to use lactaid.

I have been cooking mostly whole foods or at least minimally processed foods for some time. The diet itself won't be a problem. She doesn't like typical kid foods. I am trying to cook a bit more bland so she heals.

We are all just worn out from the 24/7 pain that is consistently a 9 on the pain scale.

I just want my little girl back.

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:( I'm sorry that she has been so unwell. That's hard on a family.

Many of us went through a withdrawl for the first few weeks where we actually felt a bit worse... I know you didn't want to hear that. I personally had a headache that lasted well over a week, and it was a doozey. I was also very tired and incredibly cranky; I was not at my mommy best for about two weeks. On the bright side, the stomach aches and bloating started to subside within days; within two months I'd lost almost 15 pounds of bloating.

As for the lactose, many of us are beyond "slightly lactose intolerant" so I would avoid milk products that have lactose for a few months until she is healed. I would avoid giving her foods that could cause her pain while she is healing. Hard cheeses are okay but milk and yogurt (I think) might hurt her. Try almond or coconut milks and yogurts for a while. You could try soy as well, but many celiacs find soy hard to handle at first too. If she does consume small amounts of milk (like in baking where you didn't substitute it out) I would definitely use the lactaid.

I would buy her a few gluten-free treats too. Maybe some gluten-free pretzels, tortilla chips, M&M's (not smarties) or make a smoothie every afternoon for a snack. Extra treats helped me not feel like I was missing out on anything at first.

I would also consider going light on school work for a week or so. We homeschool our three boys too, so I understand how some weeks have more of a paper focus and other weeks are more about fun. Maybe the next couple of weeks could include a fun art project, a field trip to a cool museum or zoo, watching documentries on videos from the library rather than reading about the topics, or read a really good book out loud together (I like to read at lunch - they're all sitting and it could distract her from different foods).

Good luck and best wishes to you both.

Oh, and you might want to consider testing yourself and the rest of your family because celiac is genetically linked... just in case.

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Welcome Denine and Family-

Transition is the toughest part - then comes healing. You've already been given great starting info.

Ask questions and read as much as you can - it really does speed the toughest part of this along.

Oh - I strongly agree that you, Dad and any siblings get tested soon and again at regular intervals - celiac disease has a multitude of symptoms - not limited to digestive issues - regardless of symptoms ALL first degree relatives need regular testing.

Hang in there - she will feel better - although it can take time :)

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Thank you all. It is so hard to continue the waiting game to see if she feels better. That is all we have been doing. Try this and see if it works, then try this and see if it works. At least the gas pains from the endoscopy are gone.

I know the doctor said she was going to check for lactose intolerance when she did the scope. If she doesn't improve, I will remove milk altogether instead of just giving her the lactaid.

She has a headache, but it seems more stress induced to me. She never really liked wheat-containing foods, so she didn't eat them much. She only ate pasta if she was told to eat it for dinner. She didn't like bread. Her favorite foods are ones she can eat like rice and potatoes and meat, fruits and vegetables. Her favorite snack is popcorn chips which she can have. So, I am hoping she won't have much in the way of withdrawal symptoms. The one thing she ate that she can no longer have are Joe's O's from Trader Joe's. Those are oats, but who knows about contamination? She is now eating gluten-free rice krispies or corn chex.

Her only symptom has been abdominal pain.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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