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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 Parent With Sick Child
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4 posts in this topic

Can someone please help! I have a 11 year old son who has been sick since

birth.. he has Gluten and Lactose intolerence or allergy not sure which and a doctor says he has IBS.

but told me to give him only meat and veggies. nothing else but only he is saying it is that he has IBS. He stays tired and has joint pain often and loose bowels 24/7.

He is also very moody. I've seen him for the last 3 years get worse. wanting to vomit with most of his bowel movements. I live in West Virginia I've been to DC and Charlottsville Va. for treatment and not getting the help I think he needs..He doesn't understand all about this and I tell him he wouldn't be sick if he stayed on this diet. If some one has a doctor that is close or has any advise please fill me in.

Thanks

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Hi mca, I'm so sorry your son is suffering so much. My son's doctor gave me the same IBS diagnosis before he decided to test for celiac, so I know how you feel.

My suggestion is to keep pushing your doc to test for celiac disease. The thing that sucks is that you have to keep your son on a diet that includes gluten, in order to get accurate results. However, in the meantime you can help him to feel a little better by trying a few things. My son's doc actually suggested fatty foods. I know it sounds a little crazy, but it worked wonders. Foods like mashed potatoes with a dollop of butter, or buttered veggies, mac and cheese, something like that. The extra fat is more difficult for the stomach to digest, so the system slows down and becomes less painful and it can help the body absorb some other nutrients from the foods and help him form less loose stools.

This doesn't work for everyone, but at this point anything is worth a try right? I know the first time I suggested this to someone I thought I was going to be told I was crazy, but several parents on this site said their docs had suggest the same thing and that it does work well.

Good luck and I hope this is helpful to you.

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please explain to your son about celiac disease - he will understand with more knowledge. My son was diagnosed last year - age 10. my 4.5 year old understands about gluten free - and also understands she just tested positivewith the' blood and now needs the biopsy. I've explained to her for the past year' - if she ever is positive for Celiac that she will have To change her diet.....

My son has adapted extreemely well. He wont cheat at all - and will Even Wash his hands if he touches something that has gluten in it.....There are lots of regular products that are gluten free - finding out what those are - are a challenge, but makes it worth the while in The end.

Dawn

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Danna Korn's "Kids With Celiac Disease" is highly recommended reading. At age 11, your son can read labels, understand what gluten is, have a short list of safe snacks he can count on, understand never to accept food without checking first, and start getting active in his gluten-free lifestyle. My daughter is also 11 and was recently diagnosed. She's doing great, because we have been matter-of-fact with her, and so has her doctor. This gives them some control, and that is empowering! I, too, have celiac disease, and was relieved and broken hearted when she was diagnosed. The best thing you can do is take a deep breath. Then take another one! The single most important aspect in your boy's recovery is YOUR attitude. And the only treatment we have right now for celiac disease is to change his diet. So with all its compexities, and in the words of my daughter's doc, the diet is "a pain in the ***" but it's all we've got. There are tons of incredible people on this message board to help you. One of the first things I did was to ask my daughter which mainstream foods she wanted me to find gluten-free substitutes for. Then I looked through cookbooks, the internet, healthfood store, etc., and came up with alternatives. Kids are not exactly gourmets, and gluten-free, even dairy free alternatives are easy to come up with, especially from the folks on this message board, who are brimming with suggestions! Do not despair! And don't think you have to "fix" this today! Because you can't. It's a day-to-day learning process, and you will get better at it a little at a time. You've gotten better at it already, right? Think of where you were before...

I promise you there are kids in your son's school who have food allergies and can't eat the birthday cupcakes either--my daughter has a stash of Reese's PB cups for celebrations at school. Some of the other kids even buy them especially for her! And yesterday I had to stop one of her friends from eating all of her gluten-free pizza at a pool party! (He said it tasted like chicken--you know how 11 year old boys are!) My point is, life will normalize, or at least become a gluten-free normal. I was fairly freaked out at first, too. Both of my children were in the hospital at the same time for their biopsies--side-by-side hospital rooms for back-to-back biopsies--unbelievably stressful! I haven't always been this calm! But you will be okay. Keep in touch here. I know it 's saved me from going off the deep end.

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    • need advice
      I'll keep this as short as possible, sigh. I remember having constipation all the time till i was 10 or 11 then i started getting diarrhea all the time. Ive never been able to pin my diarrhea to a certain type of food it always has been at random. Or it seemed that way. Sometimes ill have normal BMs for a couple weeks then diarrhea for a week or normal for a day or two diarrhea for a day or 2. I started getting tingly numb hands this year, i get sick all the time, i had one rash on my stomach i couldnt get rid of for years the doc said was dermatitis. So many more symptoms that line up with celiac. Heres the beef though- 7 months ago i had my first panic attack ever. I thought it was triggered by giving up chewing tobacco and the withdrawals coupled with stress at work and being a new dad but after reading about the connection between gluten im not so sure. The past 7 or 8 months have been hell. Constant anxiety, i dont get as kany panic attacks as i did in the beginning but now im suffering from depression. So, i started gluten free 2 days ago. The second day i started having horrible anxiety and a panic attack like my first one. Extremely intense.  Is that a sign that maybe i do have celiac or intolerance that coming off would make symptoms worse? I want to get tested but ive been to the ER 3 times and seen so many docs, psychiatrists and therapists trying to figure out a cause, i cant afford anymore. I dont think i can just one day bam! Have all this anxiety without a cause. Can i just do my best to stay gluten free and see what happens or is it very important to be tested? Also, will any gastro be able to test me? If i go to a gastro should i even bring up the anxiety and depression? Everytime i do i get a response similar to " its all in your head " and they just want to throw pills at me. I'm so lost to how my life got so messed up in 7 months. I need this to be the answer.
    • Newbie: mother to coeliac kids
      Until he starts getting better he really needs to stick with soft, bland foods. I put a mashed potato soup recipe in the recipes area. What is healthy for a normal person isn't necessarily good for an inflamed digestive system. Anything spicy, acidic should be avoided. Fruit is acidic. I've read that pickled cabbage is good, but you couldn't pay me to eat anything pickled when I was nauseous. Things that I think would be safe are: broth mashed potato soup (the am. cheese and butter make the broth taste great) Baked potato mushy meatballs, no spices other than salt low fat vanilla ice cream with whey in the ingredient list   If these things work out try adding summer squash cooked in olive oil, add salt Summer squash tastes good in mashed potato soup.   Twice as many small meals are easier on your digestive system.   I am not a doctor or nutritionist, just been there, done that, want to help.  
    • Newbie: mother to coeliac kids
      I've just had a call from out GP with biopsy results. She said it confirmed celiacs and has a March 4 level. Does this sound correct?  She said she expected it given his antibodies were the highest she had ever seen.  We have an appointment on Friday for follow up. At least we know for sure now. 
    • Needed support
      Yes I got and colonskpy and endoscopy back in Oct. They said these tests were negative. However I recently found out at my new DR that notes on my tests(colonskpy ) said cronic inflammation of my intestines. I had also been eating mostly gluten free at least six months before the test. I have the gene for it and a huge amount of  symtoms so the g I dr said she could go ahead and dianose me with Celiacs or I could eat gluten for two weeks and get the colonskpy and endoscopy done again. I chose the first one and I have been feeling better since going competly gluten free. The ct scan is for them to check for cancerous tumors and possibility of Crohns just in my small intestines. She did say that I might have more than one thing going on. I didn't realize that you can't see Celiacs on a cat scan. I know that the tumors can happen with long term undiagnosed Celiacs and I'm not sure if Crohns is related as well. 
    • Newbie: mother to coeliac kids
      Yes, the broth helps. He wolfed some down and felt okay.  He insists he didnt eat anything from his friends. He did however gobble several gherkins last night - I checked they were gluten free but I am wondering now.  Dammit. He loves gherkins.  
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