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Further Testing? DQ8 hetero gene and Symptoms resolved on gluten-free diet

alex1234

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alex1234 Rookie
alex1234
Posted

I recently found out I have the DQ8 hetero gene. Because my life was being affected so drastically, I discontinues eating gluten and have started to feel myself. about 90% of my symptoms have resolved during the past 2 weeks of eating gluten-free. Now, I need to decide whether I should continue with a gluten challenge and test for antibodies and do the endoscopy/biopsy. I am one that would be unsettled not knowing whether or not I have Celiac. Does anyone have advice on whether or not I should do a gluten challenge and do further testing to pursue a diagnosis?

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Victoria1234 Experienced
Victoria1234
Posted
20 minutes ago, alex1234 said:

I am one that would be unsettled not knowing whether or not I have Celiac.

I believe you have answered your own question. You need to go back on gluten and schedule a full panel celiac blood test in 12 weeks. 1-2 pieces of bread per day is fine.

cyclinglady Grand Master
cyclinglady
Posted

Read this about the benefits of having a celiac disease diagnosis.  It is written for doctors, but it is very useful.  

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alex1234 Rookie
alex1234
Posted
  • Author

Thank you both for the replies. The article is very insightful. Right now I am trying to reason with the thought of being miserable for 4-8 weeks to get a diagnosis. I feel so good right now it seems almost not worth it, but I also need to know if something is wrong and if there are potentially any other digestive system issues. I will likely go on a gluten challenge and deal with the side effects... after all, Thanksgiving is coming up ;)

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, alex1234 said:

4-8 weeks

Pretty sure it's 12 weeks recommended by experts. Good luck to you!

cyclinglady Grand Master
cyclinglady
Posted

The length in time can vary, but this leading celiac research center confirms 12 weeks.  You should be under a doctor’s care.

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alex1234 Rookie
alex1234
Posted
  • Author

Thank you Cyclinglady and Victoria1234

 

I would be curious to know if anyone has done the gluten challenge for say... 6-8 weeks and had either a positive or false negative result on the endoscopy/biopsy AND the Serology? It will work out best in regards to my insurance deductible to do less than 10 weeks. Thanks everyone!

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    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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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