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Hi I have a strange question. My 5 yr old DD is going through testing for celiac disease Pedi DR says test results were positive sent to GI dr he "wants to rule everything else out first" very frustrating!! But here is my question. 2 times since Christmas my daughter has had a day where she can not get out of bed her head & tummy hurt so bad. no fever just bad headache and tummy it last for almost a whole day then she is fine. I brought her to the Pedi this past friday when ot happened again she checked her over and said Flu I say no way she was better by that night and fine the next day just like it happened on Christmas eve. Has anyone ever had this happen?

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emsmom:

Yes this has happened to my 8 year old daughter too. The last time it happened was after being gluten-free for a couple of months, she cheated while at school. Well the next morning she was out of school, she woke up with nausea, diarrhea, pale, headache and a fever.

I wonder if the test results for Celiac were positive why would a doctor want to rule everything else out? It seems very obvious to me.

I hate to see or hear of little ones suffering and I hope she feels better soon!

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emsmom

This used to happen to me all the time when I was younger. The doctors said there was nothing wrong with me. When I was in grade 6 I had to stay home for 2 weeks with a migraine so bad that I was convulsing. They had no idea why! Your doctor is not too bright, he has diagnosis of Celiac yet he wants to test for other things?!?! Not worth it too me.

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Called my GI dr yesterday he claims the the test my pedi Dr ran was not a reliable test so he's running some that are more reliable. I told him that this is crazy my DD has just about every text book symptom & a few extras she is in constant pain then to start having days where she can't function is horrible the poor kid is 5 and wants to know why the dr's can't make her belly stop hurting. The dr started to mention IBS and I said NO! Even though i hate to see my DD has to do it I want a biopsy done. so we are still waiting on his blood tests (been over 2wks now) and he is scheduling a ultrasound & bioposy. He also wants me to put her on Prilosec which irritates me because we have tried zantac & tagament before and they did not do anything I feel like he's bringing us backwards instead of forward. Sorry for my ranting I am just very irritated with him. Thus child has been sick since birth and has been through so much I just want her to get better. thank you for listening

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Hi Emsmom,

My five year old daughter has the same symptoms, two blood tests came back positive for celiac disease. Ronni goes for her biopsy on the 29th of this month its hard to see her in pain and sick most of the time but I was told not to change her diet. Im confused this is all new to me.

Hillary

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    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
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    • My daughter had the HPV Vaccine last year. It was administered in three doses in April 2015, May 2015, and August 2015. Immediately after the third dose, she started having weird symptoms such has headaches, irritability, and a general feeling of being unwell (which she never had before). About three months later she started having gastro symptoms, most notably constant nausea. For several months we tried to figure out what was wrong and none of the doctors knew. After seeing many doctors and having a battery of tests, she was finally diagnosed with Celiac in August 2016. Her intestinal damage was a 3b Marsh score. No one else in our immediate or extended family has Celiac (myself and my other daughter were tested and are negative). No one else has symptoms or any indication that they could have Celiac. I feel like my daughter could have gone her whole life without being triggered and I'm feeling very guilty for making her get this controversial vaccine. I have done a lot of research and there seems to be conflicting studies regarding vaccines and autoimmune diseases. Some say there is no link, while others say there is a possible link, but it cannot be proven at this time. No one seems to know for sure what triggers Celiac...could it be vaccines? I'm wondering if anyone else feels that their Celiac Disease was triggered by a vaccine?  
    • Here is an article, albeit short, about Myocarditis and Celiac disease.  I have read before about a connection between the two and A-Fib is another one that can happen with undiagnosed Celiac. From one over-thinker to another......its the inflammation thing, along with maybe some genetic components to it.  I can't remember how long you have been gluten-free but it can take awhile for things to settle down, especially if your thyroid is wonky also.  I have Celiac and Hashi's so feel your pain, even though I have not had any cardiac involvement.  Some doctors really suck. I have a lifetime of bad with them so do not go that often, only when I have to and am leery about seeing any new ones. I am so done with that attitude of theirs. I think you need to find someone who has knowledge of Celiac and it's related conditions and who actually listens to the patient. That might be harder than finding a needle in a haystack but I wish you luck! 
      https://www.ncbi.nlm.nih.gov/pubmed/12045166
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