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See My Dr. Tomorrow. What Tests Should Be Done?


jackay

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jackay Enthusiast

Advice please. I see my doctor tomorrow and wonder if I should have the Celia panel of tests run.

This past summer I had a GI panel run of stool and saliva tests. A saliva test was run for Gliadin Ab, SIgA. The result was >100 U/ml with borderline 13-15 U/ml and Positive >15 U/ml. I thought these test results were from a stool sample and I just discovered it was a saliva sample. From the reading I've done I found out a saliva sample isn't accurate. (I read that a stool sample is accurate if it is positive but that a negative result could be false.)

Since August, I have tried to avoid gluten except for slipping for about four days in October. However, my doctor said nothing about hidden gluten and gluten contamination. My symptoms didn't get worse when I slipped, but I was feeling so miserable at the time that I don't think I would have noticed if they got worse. It has been just two weeks since I have tried eliminating all gluten from my diet and only two days since I have not used an old plastic cutting board, teflon cookware and washed my dishes and hands before eating.

Some days my symptoms are better but I have a long ways to go to being healthy. Still suffer from diarrhea, insomnia, anxiety, depression, headaches, muscle pain, hands falling asleep, loud pulse, mental fog, and difficulty concentrating.

Should I go insist my doctor run the Celiac panel of tests since I have tried to avoid gluten? I have paid my out of pocket medical expenses this year so with insurance it wouldn' cost me anything. If I wait and do a gluten challenge next year, which I really don't want to do, I will have to start over with my deductible and copay.


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Jean'sBrainonGluten Newbie

This is really a judgment call. The key is you - will you believe it if you don't have a lab test confirming it? Will you believe it enough to stand firm on your gluten free diet when you have started to feel better? I didn't and it caused me a LOT of problems because I wasn't precise about cross contamination and occasionally just eating something because I hadn't planned and fed myself and got too hungry in a vulnerable place.

If you aren't sure then I would suggest eating a lot of wheat for a week or as long as you can stand it and trying to get a test right before the end of the year. It's a risk because if you have celiac you will get sick as a dog but that will give you confirmation and make it likely that the blood test will give a true result.

I'm tempted to say Merry Christmas but given what I'm advising that seems cynical - you know?

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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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