Just Diagnosed From Blood Test

[kunger]

I was just diagnosed with celiacs. My mom has celiacs and it was strongly recommended that I also get tested. My blood report came back positive and I don't know if I should get a biopsy or not. I had a hysterectomy about three weeks ago and I seem to be showing some symptoms all of the sudden. My lips are burning, foggy head, stomach hurts and digestive issues. Is it common for symptoms to come on quickly like this? I have been doing some research and some people did say that after a surgery their body had a hard time healing and that is when the symptoms came. I have never exhibited any celiac symptoms until a couple of days ago. I haven't gone on a gluten-free diet yet because I need to decide if I am going to get a biopsy or not. Any suggestions will be greatly appreciated.

[GFinDC]

Hi kunger,

Yes, people have posted multiple times about symptoms showing up suddenly.  After surgery, after illness of some kind, after stress.  Then again sometimes symptoms show up for no apparent reason.  Other people have celiac disease for years with no GI symptoms.  They call that silent celiac disease.

You are right to stay on gluten until all testing is done.  Most doctors won't actually give a celiac disease diagnosis without a biopsy/endoscopy.  Some people find it easier to stick to the gluten-free diet if they have the diagnosis,

If you go gluten-free and then decide later to get the endoscopy, you will have to do what's called a gluten challenge.  That means eating gluten again for a period of several weeks.  Most people report having worse symptoms after going gluten-free and then going back on it for a gluten challenge.  So its easier to do the endoscopy now rather than later.

[ravenwoodglass]

Syptoms can come on suddenly and it is pretty common to see symptoms increased after a severe stressor like a surgery.

Talk to your doctor. If your blood tests were strongly positive he may give an official diagnosis based on your relief of symptoms gluten free, drop in antibodies on repeat panel and family history. It is important to have that official diagnosis so do not go gluten free until after you know if you are going to opt for the biopsy.

[kunger]

Thank you for the reply. Do you suggest getting the biopsy? It seems that some people are for it and others don't see a need if your blood test came back positive. I don't have a doctor that really knows much about celiacs and they made an appointment for me to see an ARNP in the GI department. I feel like the appointment will be a waste of time.

[cyclinglady]

Seems like you are on the fence.  

Here is my story.  I was anemic my whole life.  Finally, during routine GI consult, he suggested celiac disease.  I was shocked.  No way!  I had no tummy issues.   My hubby had been gluten free for 12 years based on what we know was rather poor advice from my allergist and his GP (worked, but we do not know for sure if he has celiac disease).  I knew how hard it is to be gluten-free.  I needed a firm diagnosis.  Hubby will tell you that I have way more support from doctors, family and friends.  No eye-rolling, etc.  

Only you can decide.  The nice thing about the endoscopy is that they can check for other things.  You can have IBD, SIBO, H. pylori, cancer (very very rare), etc.  

I wish you well.  

 

[GFinDC]

Hi Kunger,

I think it's nice to know for sure, but then again you don't get any gold star for getting an endoscopy.  Or get to eat any differently.  Sometimes people have children or relatives and want the endoscopy to be able to encourage them to get tested.  Then there are clinical trials that usually require a diagnosis via endoscopy.  Not everyone is interested in doing clinical trials though.  In the UK I think they have a tax exemption of some kind if you are diagnosed.

I think some people might find it easier to stick with the gluten-free diet if they are fully diagnosed.  I didn't get an endoscopy myself because I had been gluten-free for 4 months before my GI appointment.  I was beginning to feel better and had to work, so didn't want to do the gluten challenge.

I don't know if that helps any.

[cyclinglady]

On October 4, 2016 at 10:30 AM, kunger said:

Thank you for the reply. Do you suggest getting the biopsy? It seems that some people are for it and others don't see a need if your blood test came back positive. I don't have a doctor that really knows much about celiacs and they made an appointment for me to see an ARNP in the GI department. I feel like the appointment will be a waste of time.

Exactly what celiac blood tests were taken?  A genetic test will only help rule out celiac disease and not diagnose it.  Why?  Because  about 1/3 of the population carries the genes, but only a very few go on to actually develop celiac disease.