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

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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).

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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 !

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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!

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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.

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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 !

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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.

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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.

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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.

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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.

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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
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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.

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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...

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
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