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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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    • Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened!  Here is a biggie....does your hubby brush his teeth prior to kissing you?  Seriously, it can happen, but going out to eat a lot.....that is just as bad!  
    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
    • I'm having some issues, that I didn't really even know I was having until the blood work showed them. Retracing my steps, I eat very strictly gluten free at home. I eat too much dairy (which is not only a problem for many celiacs, it is also not an anti-inflammatory). The husband and I have eaten out a lot over the last three years of my diagnosis. I guess I have not been overly cautious as I should have been, which I'm guessing could be my problems (although I am seeing the GI doctor tomorrow). So, I'm wondering if anyone here no longer eats out ever? Were you eating out and realized you were still doing yourself damage? 
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