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Thank God For Wonderful Doctors!


celiac-mommy

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celiac-mommy Collaborator

Can it be true? A doctor listens to the parents and looks at the child in question. How is the child reacting to gluten? What are the symptoms? When you take the child off of gluten what happens? What happens when you challange the child with gluten? Let's do the blood test--negative. Let's go ahead and do the biopsy--negative. Let's re-examine the child's symptoms--

Diagnosis: We will treat Max as though he has Celiac disease. The biopsy is negative but all this means is that he's 2 and probably doesn't have enough damage to measure and maybe the samples weren't taken in JUST the right place. We won't have an official diagnosis, but as far as I'm (dr) concerned, Max has Celiac disease.

To Dr. William Marshall-

Thank you, Thank you, Thank you for listening to us!!!!!

For all the parents out there--you know your child better than any doctor could possbily know them. Don't take "no" for an answer if you know in your heart of hearts that there's something wrong! God Bless you all!


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kbtoyssni Contributor

Awesome! That doctor's a keeper!

Ursa Major Collaborator

There are actually SOME good doctors out there, congratulations on having one of them for your doctor!

nikky Contributor
Can it be true? A doctor listens to the parents and looks at the child in question. How is the child reacting to gluten? What are the symptoms? When you take the child off of gluten what happens? What happens when you challange the child with gluten? Let's do the blood test--negative. Let's go ahead and do the biopsy--negative. Let's re-examine the child's symptoms--

Diagnosis: We will treat Max as though he has Celiac disease. The biopsy is negative but all this means is that he's 2 and probably doesn't have enough damage to measure and maybe the samples weren't taken in JUST the right place. We won't have an official diagnosis, but as far as I'm (dr) concerned, Max has Celiac disease.

Yey congrats.. i think lol.

this proves that there are decent doctors in the world. I had the exact same thing happen to me .. negative biopsy.. but i was also pretty much asyptomatic (i had anemia and tiredness). But my GI (Dr P.J. Dale) diagnosed me anyway .. as far as i can tell most doctors would have said that the anemia was because im a girl and the tiredness is because of the anemia .. go take some iron and get over it. And its offical . its as if the biopsy was positive in everyones eyes.

thank God for doctors like ours :D i only wish all doctors could be so good.

HAK1031 Enthusiast

I have a great GI too...my blood was neg., and I was already gluten-free so he didn't try to make me do an endo...I had genetics, was found to have DQ2, and that was enough for him!

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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