• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Confused About Test Results Of 5 Year Old. Doctor Very Unhelpful!
0

13 posts in this topic

Hi I'm new here & hope I'm posting in the rite area. I have a few questions and some confusion about my 5 year old daughters Test results.... She had the full panel for celiac including the genetic testing and tested positive for all of them including one of the celiac gene tests. the GP reffered us to the children's hospital to the gastroenterologist he ordered repeat tests he was not very helpful and almost seemed uninterested and told us to just wait for the results and go from there once again for the second time they all came back positive I explained the symptoms she was having hence the reason for testing in the first place he continued to tell me that some of the things I mentioned were not really symptoms of celiac ...such as itching skin , blood in stools, many random blood noses and vomiting .... she also has frequent tummy pain (screams in pain ) is very little for her age except her stomach which is very round and bloated and very loose foul smelling stools which have mucus in them sorry if tmi! she seems to alternate between constipation and diarrhoea her moods are also out of control not sure if it has anything to do with it... as I said doc was of no help not answering any questions and telling me not to get ahead of it all.... At the moment we are awaiting her biopsy results I was annoyed when I found out he was preforming her endoscopy ! after her procedure he popped his head in for literally one minute and told us all went well and he cant see any damage visible he also told us he repeated yet again her blood tests ? he seems very sceptical indeed that it is celiac even though her symptoms and blood tests indicate something not rite she also had abnormal white blood cells and vitamin d and a few other things off....so has anyone had these sort of test results to be told that they in fact did not have celiac disease? Is celiac visible during the procedure without biopsy ? how did you get your diagnosis from blood tests, during the endoscopy or after your biopsy ? I just want some closure and I'm sick of people not taking me seriously I'm sick of seeing my little girl suffer everyday !!! thank-you all in advance hopefully I get some answers :)

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Good grief! That gastro is a complete idiot!!! With two positive full celiac panels, I don't even see why an endoscopy would be necessary. Also, the damage CANNOT be viewed without a microscope! He sounds so inept, be prepared to hear that the biopsy was negative because he probably didn't take biopsies from the right area or even enough biopsies. Like I said: What a complete idiot!

With the positive bloodwork, you can be sure that your daughter DOES, in fact, have celiac disease. Her numerous symptoms alone point to an obvious diagnosis of celiac. By the way, out-of-control, aggressive, anxious, and/or depressed behavior in children with celiac are widely reported and accepted as standard symptoms of the disease. Many children (and adults) with celiac also exhibit symptoms of ADHD. Your gastro is probably unaware of the latest research on celiac, which sets forth that celiac is not only a disease of the gut; in fact, it is also a neurological disease. Your little girl is very lucky to have a mother who persevered to get a diagnosis. Now, you'll need to move on with changing your daughter's diet and paying no attention to the gastro behind the curtain. That man shouldn't even be practicing as a doctor, in my opinion.

I'm sure others will jump in with similar comments. In the meantime, please remove gluten from your daughter's diet (and possibly dairy for a while, too, while she's healing).

1

Share this post


Link to post
Share on other sites

Thank you very much for your reply :)! thought it was silly of him to keep dismissing me and ignoring my questions ! i no something is not rite with my little girl she is defiantly not well! In a way It would b a relief for them to be positive so we can move on. the doctors keep telling me not to put her on a gluten free diet unless the results are positive but now that all the testing is done Im going to go forth with it regardless and hopefully ill see an improvement I am defiantly prepared to here that it is negative for some reason! Im glad to hear the behavioural issues are a symptom she is very hyperactive crys alot for a 5 year old and is easily aggravated . every time i try and ask a question or even tell him what i think he was not interested... I even asked what else could cause such posotive results 2 times in a row? again nothing .... I think my next step is to see a dietician and get some advice on reading labels and knowing how to be safe ! thank you for your advice you have been very helpful! (hopefully I will be able to update with some news when I get results! im interested to see what the results will be! fingers crossed) :) thanks !

0

Share this post


Link to post
Share on other sites

Regarding the reading of labels, that may not be necessary for a while. Generally, we advise people with newly diagnosed celiac to eat only whole, natural foods. I realize, however, that your little girl will probably want some sweets, crackers, and bread. Just be sure that everything is labeled as certified gluten free--then you won't need to read the labels. Otherwise, home-cooked meals of natural foods will ensure that she doesn't experience cross-contamination. I think you're about to see a very different little girl shortly! Best to you both!

1

Share this post


Link to post
Share on other sites

Also you'll need to get accomodations with her school (i'm assuming you are in the US yes?). No playdough, no palaster like stuff, some glues have it in it, etc. Not to mention meal times. You get the idea. For this though, she'd need to have an official dx with a letter from the doctor stating it (i'd just go back to the good doc and get it, generally they have no issues doing this).

The GI doc was wrong, those ARE symptoms. She's having bowl issues bad enough that its causing bleeding (could be from hemroids for example). Itchy skin? Dh. Vomiting? It was one of mine when i was really sick. I cut gluten out and guess what stopped?

She will also go through a gluten withdrawl once you place her on the diet. It will be hard on the both of you no doubt. Be prepared for it. I know how bad it can be for us adults, but for a small child? oh dear.

Another idea is to get her excited about it. How fun and exciting it'll be to try something new, try to get her to help out.

1

Share this post


Link to post
Share on other sites
Ads by Google:


I will try my best to give her natural foods and products but as you said she is a small child and will likely not understand why she cant have things other children can, I'm pretty new to all of this I've been told there is now many great gluten free products that she wouldn't no the difference :) I hope I will see a different little girl a much happier healthier one ! I am from Australia, I am worried that if this biopsy turns out to be negative he will just dismiss it and she wont get what she needs at school ... is it true that the damage can be patchy? my GP mentioned its possible that in children there isnt yet enough damage and might be missed in biopsy. I might just go back to the GP that reffered me in the first place and put me on the right path and get her to write me a letter. glad to no im not crazy and they are indeed symptoms :) it will be hard for her to understand and im preparing myself for withdrawal but I know its for the best :) thankyou all once again very helpfull info !

0

Share this post


Link to post
Share on other sites

That GI doctor is very misinformed about celiac. Do go back to your GP and let him know what your experience was so he will make his next referral to someone else. You GP seems to be much more knowledgable about celiac than the GI is. Your GP can give you the needed paperwork for her needed accomodations at school.

I hope your little one recovers quickly.

0

Share this post


Link to post
Share on other sites

Oh that makes me mad. I try to stay positive but these doctors are well paid enough that they should at least be up on the research and proper techniques. What gets me about doctors who tell parents their kids can't have celiac (BTDT) is that they don't tell us a likely alternative. It's almost like they're saying a world where little kids can't digest food and poop their pants with horrible mucousy diarrha ten times in a day is normal. If that's normal, what is the point of a GI specialist? And blood in the stool? My son had most of the other symptoms, including small stature, but passing blood is serious and should be taken seriously.

0

Share this post


Link to post
Share on other sites

If the doctor dismisses it, get copies of both bloodwork tests that proved she has celiac....and take them to another doctor for the diagnosis. Also, not all of us ended up suffering from withdrawal. I know that some people on this forum have experienced it, but I was 47 when I was diagnosed....and all I felt was MUCH BETTER after removing gluten and no withdrawal symptoms whatsoever. Hopefully, your daughter won't either. I think that you're right--with all of the gluten-free substitutes, she probably won't be able to tell the difference. It is only in social circumstances that she will meet with challenges. Freeze gluten-free cupcakes and take one to school when a classmate is going to have a birthday with cupcakes so that she won't feel left out. I understand that some schools even let parents leave the gluten-free cupcakes and cookies in the cafeteria freezer or faculty freezer so that when there are parties and celebrations, the treats can be removed and thawed ahead of time. If not, some candies (such as Reese's Peanut Butter Cups and Hershey's chocolates) can be kept in the teacher's desk for emergencies.

0

Share this post


Link to post
Share on other sites

If the doctor dismisses it, get copies of both bloodwork tests that proved she has celiac....and take them to another doctor for the diagnosis. Also, not all of us ended up suffering from withdrawal. I know that some people on this forum have experienced it, but I was 47 when I was diagnosed....and all I felt was MUCH BETTER after removing gluten and no withdrawal symptoms whatsoever. Hopefully, your daughter won't either. I think that you're right--with all of the gluten-free substitutes, she probably won't be able to tell the difference. It is only in social circumstances that she will meet with challenges. Freeze gluten-free cupcakes and take one to school when a classmate is going to have a birthday with cupcakes so that she won't feel left out. I understand that some schools even let parents leave the gluten-free cupcakes and cookies in the cafeteria freezer or faculty freezer so that when there are parties and celebrations, the treats can be removed and thawed ahead of time. If not, some candies (such as Reese's Peanut Butter Cups and Hershey's chocolates) can be kept in the teacher's desk for emergencies.

I agree with this information completely! I know of very few people who went through a "withdrawal" after starting the gluten-free diet. I was diagnosed at 46 and never once had a problem after going gluten-free and I think it was because I was so sick when I was diagnosed, the only way to feel was better. I think for some, the thought of never eating gluen again can be very upsetting, even though once gluten-free, you find that there is damn little that can't be duplicated in a gluten-free form that tastes every bit as good. In fact, if you view gluten-free snacks and food as normal as what everyone else is eating, then there shouldn't be all the stigma that can be attached to a special diet. It's all psychological. For anyone having to switch a young child over, just refer to what they eat as a cracker or cookie and not a gluten-free cracker or cookie. A 5 year old won't know the difference.

0

Share this post


Link to post
Share on other sites

UPDATE: thankyou all very much for your help and sorry for the late reply.... been very hectic week indeed ... I got a call today and the biopsies were in fact positive !!! Not sure how to take it in a way I'm happy to finally have the solid confirmation and to no what is defiantly wrong with my daughter and in another way worried about were to start ! I'm glad the GI doctor will now hopefully not b so skeptical with other patients in the future !!! Once again thank-you all for your help I look forward starting her new diet and hopefully seeing a big improvment!!!

Edited by Tiffanylee
0

Share this post


Link to post
Share on other sites

It is good that you now have clear confirmation of what is going on with your daughter. We are here to help you make the changes you will need to make to keep her healthy. It is overwhelming at first so ask any questions you need to ask. Also with her now firmly diagnosed you do need to make sure everyone else in the family is also tested whether they appear to have symptoms or not.

0

Share this post


Link to post
Share on other sites

Congratulations on a firm diagnosis! BTW, you said that you're "from Australia." Do you still live there? Or did you move to the States? Just curious....because you have many gluten-free options in Australia. Also, there is an Australia/New Zealand thread that is very popular, and you might wish to join in the conversation.

Personally, I wish I lived in Australia--living a gluten-free life in the larger cities is much easier than it is here in the States. My daughter is a permanent resident living in Sydney, and I visit her yearly. I truly wish I could retire there...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • 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 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?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events