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Do I have celiac disease


Jennie-Lee

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Jennie-Lee Newbie

My family doctor had me do a blood test and stool sample. I was told I tested positive for celiac disease. 

My doctor sent a referral to a gut specialist who immediately sent a note back stating he did not think I have celiac disease. Now because I am not considered urgent I could wait a year for a biopsy.

I get bloated to the point I look pregnant, I have missed my period, it took me 3 years to conceive my son and had to take fertility drugs, I am always tired, always feel sick, get cramps, feel nauses, have to unbutton my pants at work after eating because I am so uncomfortable. I do have some good days. I have been sick my entire life and have always been underweight. What do I do? Signs point to celiac but how do I confirm it without a biopsy? I cannot go on like this for another year. Would really appreciate any insight. Thank you.


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TexasJen Collaborator

Hi Jennie-

I'm sorry you feel so miserable.  Do you have a copy of the labs results?  That might help shed some light on how best to make your plea to the GI to get you in sooner. 

Regardless of whether you have celiac or not, it sounds like something is going on. 

There are several steps you could take depending on the results. 

1. Labs are really negative- work with PCP on other possible diagnoses, keep a food diary and symptoms diary and try to pin it down yourself, go on a gluten free diet and see if that helps your symptoms (but if it helps, you will have to do a gluten challenge in the future and sometimes the reactions after being gluten-free are more severe)

2. Labs are really positive and the GI was wrong - send a letter to the GI doc and he sees his mistake and makes you an appt next week or go gluten free until 2 weeks before your appointment, then start a gluten challenge until your scope.

Good luck!

 

Victoria1234 Experienced

There is no official stool test for celiac that a doctor would order. What kind of doctor did this?

Please post your celiac blood test panel for us to see so we can help.

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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? 
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      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.
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      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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