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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.

Awaiting Test Results For 10 Year Old Son
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4 posts in this topic

My 10 year old son is in the process of being tested for Celiac disease after years of stomach pain and diarrhea. I concluded that he was lactose intolerant in January '12 (because my 4th child was diagnosed at 12 months with lactose intolerance-but he still has diarrhea sometimes). We went lactose free and avioded as much dairy as possible but the stomach pain and diarrhea continued, although to a lesser extent. Because of this, we went back to the doctor in March and the doctor said he had lost weight since January. Some days I think it may just be lactose intolerance and other days I think it could be Celiac. Aside from stomach pain, diarrhea, weight loss and lactose intolerance, other symptoms he has are constant mouth sores, difficulty sleeping, inattention, gas and bloating, itchy skin. He has had some brown spots on his teeth. He has had one cavity and delayed eruption of adult teeth(the dentist had to pull a baby tooth because it just wasnt going to come out as there wasn't anything behind it yet to push it out). He does have a peanut allergy as well. We also have autoimmune disorders in our family (RA, Hypothyroidism). I do have other children with similar issues, although not as severe as my oldest. I guess I'm wondering if anyone else has had similar issues with their children. Am I just reading too much into his symptoms? Or do you think it could be Celiac? I'm a little confused as to what to do next if the tests do come back negative. Any thoughts would be appreciated.

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It sounds like he has all the symptoms of celiac disease and a family history of autoimmune conditions - I would actually be surprised if the tests came back negative.

The lactose intolerance can be caused by celiac damage, so that could be a symptom too.

I would finish the testing (blood tests and biopsy) then give the gluten-free diet a try for a few months. If he doesn't test positive for celiac disease he could still have gluten intolerance and benefit greatly from the diet.

Hope he is feeling better soon.

Cara

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Thanks for your reply. I will continue to look for answers for my son. Where I live, it takes a month to get the results. I guess I needed some validation through this forum in connecting his symptoms to Celiac. When the doctor said he was giong to test him, I did some research on Celiac and was shocked to see the similarities. Thanks again for listening.

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My oldest son(now 11) has had various symptoms. Since birth he suffered constipation. Tried everything under the sun when he was little to age 4. He also suffered from Gas, bloating, abdominal pain, slow/stalled growth and cavities. He was around 7 when I was diagnosed with celiac. I had him and his little brother blood tested and they were negative. Oldest boy has been blood tested every year since then and was negative. What really got me seriouslly considering he may have a gluten problem was after his little brother was diagnosed by blood work when he was 5 almost six(in hindsite I think my youngest was celiac since he was a baby). I decided to consult with a GI and get him scoped in case he was a seronegative celiac. His scope/biopsy was negative also. I bit the bullet and decided to trial him gluten free for three months after his scope. The difference was unbelievable. His constant almost daily stomach aches went away as well as the gas and bloating. He started gaining weight and growing in height. He did test gluten after the trial and suffered some minor stomach aches, but he didn't eat very much. He decided that he felt better gluten free and decided to stay that way for now. It has been almost 8 months now and he is doing great!

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    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
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