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Who Uses A Dietician/nutritionist?


JBaby

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JBaby Enthusiast

Did you or do you have one? Did it help?


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Amyleigh0007 Enthusiast

I spoke to one on the phone after my son was diagnosed and she gave me some websites to check out and wanted to schedule an appointment. I declined. My son is so picky about food and I didn't want him to feel like he was going to be forced to eat all different foods. We started slowly, substituting the foods he actually ate (chicken nuggets, mac and cheese, and that's about it) with gluten free versions. We did just fine.

JillianLindsay Enthusiast

I saw a dietitian last week (~3 weeks after my Dx). I had already done a lot of research on my own and she really couldn't tell me anything new. We just went through my diet and made sure I was following the food guide. Luckily it was covered by insurance, so I didn't pay to be told I was already doing everything right.

wendstress Rookie
I saw a dietitian last week (~3 weeks after my Dx). I had already done a lot of research on my own and she really couldn't tell me anything new. We just went through my diet and made sure I was following the food guide. Luckily it was covered by insurance, so I didn't pay to be told I was already doing everything right.

DITTO! She said we don't see too many Celiacs.... Best advice she gave me was to join the local Celiac Support Group. THEY have been extraordinarily helpful!!!!!!

cat3883 Explorer

I was fortunate to find a nutritionist in my area that has Celiac Disease. She has been very helpful. I spoke to a dietician before I met my nutritionist and she said she wouldn't be able to help me.

darlindeb25 Collaborator

I would be a dietician's nightmare! :lol: I am my own dietician. My sister is a dietician, and celiac, so I do have someone to discuss things with. Of course, reading in all these forums, often times I am telling her something she didn't know! :P

Lisa16 Collaborator

I had an excellent experience with one a few years back. He was extremely knowledgeable about celiac and we did a specific carb diet type thing for awhile. He was very supportive and I learned a lot and lost weight (20+ lbs.). Kept a journal, became aware of other allergies and really started to recover. I loved my guy. He was technically a specialist in diabetes, but he helped me.

I think that anybody who gets a celiac diagnosis should automatically be referred to somebody who knows about the diet. Unfortuantely, I don't think there are very many of those out there. I got lucky.

I hope you get lucky too!


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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • 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. 
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