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New - Testing Question


lynne502

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lynne502 Rookie

Hi, this is my first post here. I'm 24, hypothyriod (Hashi's - on Armour) and have B12 deficiency (taking injections) and low ferritin (storage iron - took supplements). I've always had alot of stomach issues. I asked my doctor if celiac was a possibility and he did a blood test, but it was just for wheat or gluten allergy and they came back negative. So I went to a gastroenterologist and asked about it and she said it was possible and did an endoscopy with biopsies, which was negative but did show gastritis and esphogitis. She said I definitely did not have celiac. So I just tried to ignore things again.

Nine days ago I decided to try a gluten free diet to see if it would make a difference. At first I couldn't tell a difference, but I'm feelin sick right now, and I think it's because I might have accidentally had some gluten. I ate at a church picnic - plain salad with gluten-free dressing (I read the label), but might have had CC issues? Is this possible that I would already experience nausea and "stomach distress" from CC when I was eating pasta and bread 9 days ago?

Also, I thought I'd go back to my doctor this next week and ask for the celiac panel to look at antibodies since that was never done (I've learned alot reading online the past week). If it was done this next week, do you think the results would be accurate given that I'll have been off gluten for under two weeks?

Thanks.


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lynne502 Rookie

Does anyone have any advice regarding the blood tests? I'm going to call the doctor but was hoping someone would reply first. Thanks

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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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