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Question About First Visit With Doctor


Menqet

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Menqet Newbie

Hi everyone!

I am going to my doctor on Monday to see if I can get tested for celiac (and to have my hearing tested, too). I've been gluten-free for several days, and I feel great now! My husband thinks I'm nuts. My question right now is, should I start eating gluten again before my doctor's appointment? I'm not sure when/if he'll test me. The thought of going back to gluten freaks me out. I'm 36, married and have two amazing daughters. I see some symptoms in my youngest, which has prompted me to find answers.

Here's some of my history:

-symptoms from the past 4-5 years includes: psoriasis on both my index fingers, occasional diarrhea and stomach pain/cramping (not at all consistent, though), horrible memory, lack of concentration, depression, extreme fatigue, hair loss, migraines, weight gain (because I feel like I need to be eating constantly!) - all which is starting to go away with eating gluten-free

-some family history includes: brother that was diagnosed with schizophrenia (so horrible, it was the worst), aunt that was diagnosed with osteoporosis in her early 50's, diabetes. As for myself, I always had anemia (grandma used to dose me up pretty good with her Geritol!), discolored adult teeth, horrible growing pains.

I just don't know when to go back on gluten for testing. Should I wait to talk to him first?


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Lisa Mentor

Hi and welcome!!!

If you have been gluten free for "several days", it should not mess up your result as long as it's done in a timely manner. Yes, the optimum for testing would be a full diet of gluten.

I would request a full Celiac Panel ( I will include that at the end of this post). As well, request a full Metabolic Panel, to check on any deficiencies you may have.

Some PCP do not have the knowledge to interpret the result of the tests they order, so please request the result, so you have it.

*

Serologic Tests

1. EMA (Immunoglobulin A anti-endomysium antibodies)

2. AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies.

3. DGP (Deamidated gliadin peptide antibody)

4. tTGA (IgA anti-tissue transglutaminase)

Menqet Newbie

Thanks so much! I will definitely take that list with me to the visit.

I only started researching celiac this past week, so all of this is very new to me. If that's really what I have, then it certainly explains so much about my life. We'll just have to see what the test results say. Right now, everyone just thinks I'm crazy, and that I was just too bored being snowed in my house for a couple weeks. I really think that things came to a head during the snow storms, because everything we had to eat in the house had so much gluten in it. I felt so horrible! I normally naturally eat gluten free, anyway, so that hasn't been too much of a change for me. A cousin of my husband went through celiac testing, and she helped convince me to get tested.

Again, thanks for the list. I'm very excited that I found this forum!

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      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? 
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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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