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Frustrated With Allergy Doc


Lukalovescats

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Lukalovescats Rookie

Had my daughter at the allergy dr. today to get food testing done. She's had a mysterious rash on her privates for almost a year now. I was diagnosed with gluten intolerance in December and she was about a month ago. The rash still isn't clearing up, but hoping it will with the diet changes. We've tried several creams. The doctor said I should get her biopsied so I know for sure. Why put her through all this when she may not need to be. She kept going on about the social implications and how hard it is to eat gluten-free especially out. Just so frustrating how she was talking to me especially in front of my daughter. I felt like all the talking I have done with my daughter about how this is a good thing and look at all the things she can still eat, just went down the drain.


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HAK1031 Enthusiast

If you're talking about biopsying the rash (and not doing an endoscopy) then it's not a big deal to do. All the doctor really has to do is swab an NOT ACTIVE legion (I think they just swab, or it might be a prick, someone wiht better knowledge of DH can confirm that?)

Of course, if going off gluten makes your daughter feel better, go for it.

gfgypsyqueen Enthusiast

My daughter had a rash that responded to nothing and came and went with no ryhme or reason. The combination of gluten-free & CF made all the difference. She gets a rash from trace amounts of dairy. So maybe that would do the trick?

Not sure of the age of your daughter and that might make a difference. But, I have learned to politely go head to head with the doctors and correct them when they are wrong. I am sure one day it will embarrass my kids, but it also proves that Drs are just people...not demi-gods. I have corrected them when they are wrong about Celiacs, argued about her symptoms and that they are not a non-issue, and insisted on testing. I have also made them explain their thoughts and reasoning for other tests and in the end, it is my child, I need to understand what they are doing and why and what my child will be going through. Yes, I do the same thing with my Drs. So in my opinion, you stand up for your child in every other situation, right? Same thing happens in the Drs office. No yelling and screaming. Just a lively debate to make sure issues are addressed and understood by all. Always be polite and respectful. And by all means, insist that they speak positively about Celiacs from the first negative mention!

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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.
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      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. 
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