Is A Biopsy Necessary For Me?

[aliandsander]

My 6 year old daughter was recently diagnosed with Celiac, (positive blood work and biopsy confirmed).  I suspected Celiac for her because my brother has it.   The whole family was then tested and my blood work came back positive (ttg ,72- even though by that time I was already eating a mostly gluten free diet).  

 

My question is- do I really need a biopsy to confirm diagnosis at this point?  I'm having a difficult time getting in to a GP for a referral to a gastro- I'm anxious to start my gluten free diet.  Though I didn't have many symptoms, I am hopeful and looking forward to improved stomach issues with the gluten-free diet.  It's hard to continue eating gluten while I wait.  Any thoughts on whether the biopsy seems necessary for me would be greatly appreciated

 

 

[nvsmom]

I think for most adults, getting the biopsy done is a personal choice.  Some like to have it done so they are absolutely sure they need to go gluten-free, but that sometimes backfires as false negative biopsies are not rare.  Others like to know what starting point their intestinal damage is at in case they want to come back and check it.  Medically, I do not think the endoscopy is helpful except if you need to recheck progress with the biopsy, and not many people do that.

 

With a positive test, and a strong family history of celiac disease, it is probably celiac disease, but do what you feel most comfortable with. 

 

Best wishes with whatever you decide.

[aliandsander]

I think for most adults, getting the biopsy done is a personal choice.  Some like to have it done so they are absolutely sure they need to go gluten-free, but that sometimes backfires as false negative biopsies are not rare.  Others like to know what starting point their intestinal damage is at in case they want to come back and check it.  Medically, I do not think the endoscopy is helpful except if you need to recheck progress with the biopsy, and not many people do that.

 

With a positive test, and a strong family history of celiac disease, it is probably celiac disease, but do what you feel most comfortable with. 

 

Best wishes with whatever you decide.

Thank you, Nicole!  

[SoLacey]

I asked my doctor if I should have the endoscopy because I wasn't able to get a positive blood test but I have so many symptoms that are indicative of Celiac.  All of which improved on a gluten free diet.  My iron, vitamin B and D were low, liver enzymes were high, estrogen was practically non-existent, my blood sugar was fluctuating from at times very high and others very low levels.  Those were the things we could see a marked difference on paper, they all returned to normal levels after having been gluten free for a couple of months. 

 

Other symptoms like exhaustion, aches and pains, brain fog etc also went away.  They also feel that the reactions I have to gluten are way to violent not to be Celiac.  I wondered if I needed an on paper diagnosis though.  It sometimes bothers me that I don't have it, especially when people question how I can be sure.  My doctor said "You know you have it, I know you have it, there's no reason to do the endoscopy".  Not sure if that helps. 

[aliandsander]

I asked my doctor if I should have the endoscopy because I wasn't able to get a positive blood test but I have so many symptoms that are indicative of Celiac.  All of which improved on a gluten free diet.  My iron, vitamin B and D were low, liver enzymes were high, estrogen was practically non-existent, my blood sugar was fluctuating from at times very high and others very low levels.  Those were the things we could see a marked difference on paper, they all returned to normal levels after having been gluten free for a couple of months. 

 

Other symptoms like exhaustion, aches and pains, brain fog etc also went away.  They also feel that the reactions I have to gluten are way to violent not to be Celiac.  I wondered if I needed an on paper diagnosis though.  It sometimes bothers me that I don't have it, especially when people question how I can be sure.  My doctor said "You know you have it, I know you have it, there's no reason to do the endoscopy".  Not sure if that helps. 

I totally understand.  My extended family seems to have a hard enough time understanding why I'm so strict with my daughters diet.  Without the official diagnosis, I think I would end up feeling defensive all the time.  But I suppose a positive blood test and family history should be enough.  I'm starting to realize that I shouldn't have to prove myself to anyone- I know I have it, that should be enough.  Thanks.

[BlessedMommy]

It's possible to be strict with your diet without having a fully confirmed DX. I'd be the first person to say that if you can get one, do it, because it makes things easier, but as an adult, you can still maintain a 100% gluten free life without one. I don't even have positive bloodwork, as I got hospitalized in the process of trying to get there and my doctor agreed that gluten caused the hospitalization, so my family and I feel that it's more prudent in my situation to just stick with 100% gluten-free.

 

Most people are not going to ask or care about the details of your lab tests, just let them know that it's imperative that you stay away from all traces of gluten and stick to preparing and bringing your own food. Talk to family and try to educate them if you can.

 

My inlaws are supportive of my diet and they went so far as to buy a brand new separate grill (voluntarily out of their own pocket!) for the gluten free people, to avoid cross contamination. I also keep a flexible plastic cutting board at my IL's.

[nvsmom]

I totally understand.  My extended family seems to have a hard enough time understanding why I'm so strict with my daughters diet.  Without the official diagnosis, I think I would end up feeling defensive all the time.  But I suppose a positive blood test and family history should be enough.  I'm starting to realize that I shouldn't have to prove myself to anyone- I know I have it, that should be enough.  Thanks.

I skipped the biopsy myself; positive tests and a family history was enough for me too.... Once your family sees you sticking with the diet, they'll probably come around - mine did.  

[aliandsander]

Just wanted to follow up for anyone interested.  I finally got in touch with, through a recommendation, a great GE who recommended that I get a biopsy.  She felt it was important to get a baseline- to see how much damage has been done.  She also felt it would be smart, since I don't have a lot of noticeable  symptoms- just in case I wasn't actually incurring damage to my small intestine.

 

Anyway- my biopsy confirmed damage.  I have to say, I'm glad I did it.  For me personally, the peace of mind is worth it.  Now I won't ever second guess myself- and feel more confident standing up for myself.  Many of you might not need that, but I did.  Thanks again for all of your advice.

[LauraTX]

That is great to hear you got some conclusive answers.

[nvsmom]

I'm very glad that it worked out for you!