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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.

Behavioral Issues With 4 Year Old Celiac
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Hello, I am new to this site and in desperate need of someone who understands this disease(because his pediatrician here in town DOES NOT). I am a 25 year old single mother to a newly diagnosed 3 1/2 year old boy. He had his biopsy confirmed about 4 months ago and has since been on a STRICT gluten free diet(he seems quite sensitive though). My problem is his behavior and "grumpyness". His BMs are better they were 12 times a DAY at his worst and are now 5-6. So I am assuming his diet is working alittle so far but his behavior is like none i've ever seen in a 4 year old. He has had some speech delays since he was young and is currently in preschool with speech therapy once a week and has come a long way since the start. He is just always grumpy and always saying "No...No...No I dont want to" or "stop it!" when I just ask him a simple question like, "Do you want the green marker or purple?" ... Simple things like that. I am just curious to see if other parents have seen this with their celiac child or if this could be something deeper. I have just been researching and googling my brains out and do not know if this is the disease or if maybe some behavioral issues are behind all of this. Help! I just want to take care of this and help my boy, because I know he does not want to be like this :(

PS- He will have an autism/behavior evaulation in December because of his speech and behavior issues(but shows no signs of autism other then speech delay-no stimming, he has eye contact, lovey-when he wants to be, plays well with kids, and speaks 3-4 word sentences just doesn't understand how to keep or start a converstaion it is mostly "I dont want to go to the park" or "I want a juice box"

**paranoid and never known of celiac before his diagnosis ... Thank you!

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Welcome Jack's Mom!

I can't tell you if his problems are completely related to Celiac Disease, but can confirm they could be.

Couple thoughts regarding Jack:

  • Is it possible he is getting minute amounts of gluten in school?
  • Have you removed all gluten from your home? It is possible to have a shared kitchen, but a very high level of care is needed.
  • Any pets? Most dry pet foods contain gluten.
  • He is still healing - many of us become very grumpy during the early days and when we are glutened.

For you:

  • Is there a Celiac Support Group near you - some cities have separate groups for kids.
  • Have you been tested for Celiac Disease - it is genetically linked.

Hang in there - he will likely improve greatly as time gluten-free increases - but it is wise to make sure there is not something else going on.

Come back here anytime to ask questions, gain support or simply vent :)

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(hugs) I'm sorry to hear that you are having a hard time right now. I hope you find helpful advice around the forum.

My 10 year old son most likely has mild Aspergers (we haven't pusued a complete diagnosis) and has some of the behaviours you describe. When he was a toddler it was fairly easy to have the boy who was happy to sit and line up cans of food but as he got older we noticed how he talked at us rather than with us.

He was a serious little fellow too and did not tolerate irritants well.

That being said, my 10 year old had many of the same symptoms that I remembered having when I was a child. I had him tested, along with my other two boys, and they all had negative tests. We changed them to a gluten-free diet anyways and have seen some improvements over the last month. My son is less sensitive and able to control his emotions a bit better. He also has approached family friends, who he had previously never spoken to, and is able to participate in group work and play for much longer periods of time than he did previously. He is still less socially adept than his 8 year old brother, but it's improved.

He also is cutting dairy out of his life. Many kids with autism have a leaky gut and have issues with gluten, the casein in millk, and soy. We're slowly working towards cutting out all that... with him, a slow change works better than an abrupt one. Removing milk and soy could help your boy. Improving gut health by adding probiotics and making sure he does not have too much yeast in his system could help too.

Jenny McCarthy's book about her son's autism struggles have some good tips. In fact it was her book that made me see my oldest son's behaviours could be liked to autism. There are quite a few cookbooks on a Gluten-free Casein-free diet for autism and ADHD out there that could be helpful.

My 5 year old also had a huge improvement in his bathroom habits. He had a bowel movement about 8 or so times a day, often during a meal. He now goes just twice a day and it is much more consistantly formed.

Best wishes to you and your son.

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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
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