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Need help understanding my results...


bfernando

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bfernando Newbie

I’ve been feeling really sick the past 2 or 3 months and i’m 19 years. Some days are great, others are terrible. But it’s affected on me going out with friends because i never know if i will feel bad. The only pain i have is in my lower gut underneath my belly button, and if it happens, it’s always after i eat and i feel really sick. Just want to lay in bed curled in a ball. I had blood work done and it says my “Tissue Transglutaminase AB, IGA” is 45. I need help understanding this, i’ve been on a gluten free diet for 4 days now. Thanks for reading.


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tessa25 Rising Star

If your test results give a range and your number is above the normal range then your next step is to have a gastroenterologist do an endoscopy/biopsies to confirm a celiac diagnosis.

 

frieze Community Regular

and you need to be eating gluten to get the scope

OregonDonna Rookie

Belly pain can be caused by a plethora of things. You did not mention a visit to your doctor? I'd see one before self diagnosing. Could be something easily fixed like gallbladder issues.

bfernando Newbie

I went to the doctors today and be says i do have celiac disease. How long does it take for a gluten free diet to start improving my symptoms? And does that mean i can’t have ANY gluten again?

bfernando Newbie
6 hours ago, tessa25 said:

If your test results give a range and your number is above the normal range then your next step is to have a gastroenterologist do an endoscopy/biopsies to confirm a celiac diagnosis.

 

I went to the doctors today and be says i do have celiac disease. How long does it take for a gluten free diet to start improving my symptoms? And does that mean i can’t have ANY gluten again?

5 hours ago, frieze said:

and you need to be eating gluten to get the scope

I went to the doctors today and be says i do have celiac disease. How long does it take for a gluten free diet to start improving my symptoms? And does that mean i can’t have ANY gluten again?

cyclinglady Grand Master
(edited)

Normally, celiac disease is diagnosed by a Gastroenterologist. That is because while the tests that measure antibodies used to help determine celiac disease could be false or may be elevated in other diseases like Crohn’s.  So, a Gastroenterologist will actually take a look inside your small intestine and take tissue samples for a pathologist to review.  

Some people do not have access to a Gastroenterologist for a variety of reasons (no insurance, etc.).  In that case, a doctor might run a genetic test and run the rest of the celiac panel which includes the EMA and DGP, and then place you on a gluten free diet to see of your symptoms resolve.

If you do have celiac disease you MUST remain gluten free for life.  Of course, you can choose to consume gluten, but you will be sick.  You might develop more autoimmune diseases like lupus or type 1 diabetes.  

Healing can take months to a year.  Everyone is different. There is a steep learning curve to the gluten-free diet and mistakes are often made and delays healing.

You might want to get a second opinion.  Get your lab test results and take them with you. 

Edited by cyclinglady

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • 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. 
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