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

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

      By Samanthaeileen1 · Posted

      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
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