Celiac?

[Kadee]

I have been experiencing severe stomach pain with occasional nausea/vomiting for the past sic months. In February my primary had a blood test done for celiac, which came back negative so I thought that was ruled out. Last month I went to a GI doctor as my regular doctor was stumped. They sent me in to do an endoscopy and did further bloodwork for celiac. Today I had my follow-up and left with more questions than answers. Again, as expected, the blood test was negative. However they told me that when they did the scope there was indication of celiac disease. So my question is how do I know (since the tests are contradictory) if I have celiac or gluten intolerance or neither, and which of these is traditionally more accurate?

[Lisa]

Hi Kadee and welcome.

 

Testing can be very illusive, thus,  it takes an average of 11 years for a proper diagnosis.  Blood test, endoscopy exam and a positive dietary response can all determine a diagnosis.  Were biopsies taken during your endo exam? If so, it might indicate a diagnosis.

 

I would suggest you begin a full gluten free diet (assuming all testing is complete) and document your response.  If your symptoms subside with time, you can conclude that you are either Non-Celiac Gluten Intollerant or you have Celiac Disease.  Both, are managed by the gluten free diet.

 

Eat simply.  Meats, fish, fruits, veggies, rice and potatoes.  And keep it simple with salt and pepper.  If you see improvements, you can add a little at a time.  The reason for this is get you gut to heal.  OH!  And dairy.....give it up as well  for at least 30 days.  Dairy can cause symptoms very similar to Celiac, but after some time, it can be successfully reintroduced.

 

Hope this helps.

[nvsmom]

You might want to get copies of your labs to ensure that your doctor ran the right lab tests. On p. 11-12 of the below report are all of the celiac tests and how good of a test they are.  The DGP, tTG, and EMA tests are the best, and they are best done in combination.

Open Original Shared Link

 

If you had a positive biopsy, then you (most likely) have celiac disease, and for whatever reason you do not have enough serologic marker to register at the moment... there are a few other board members around here who have had the same thing happen to them. It's not as unusual as you would think. And if your doctors won't say that celiac disease caused the damage that shows "indication of celiac disease" then I would push them to find out what caused it then, because something did. 

 

I agree with Lisa, you should start the gluten-free diet once your testing is complete, even if the doctors won't come right out and say celiac disease. It can't hurt - it can only help.  Best wishes.

[Kadee]

Thanks for the help! I guess the most confusing part for me was that they said that the endoscopy indicated celiac, but they didn't specify if it was something they saw during the scope or if the biopsy indicated it. And at the time I was taking all of the information in and didn't think to ask. Of course the questions all come to me afterwards! I'm going to check this week to see if the results were sent to my primary, and if so have him try to translate the findings to me. I think I'm all set with the tests (for now at least, with the exception of a lactose test in a few weeks) so I plan to start the diet soon. Thanks again

[notme]

Thanks for the help! I guess the most confusing part for me was that they said that the endoscopy indicated celiac, but they didn't specify if it was something they saw during the scope or if the biopsy indicated it. And at the time I was taking all of the information in and didn't think to ask. Of course the questions all come to me afterwards! I'm going to check this week to see if the results were sent to my primary, and if so have him try to translate the findings to me. I think I'm all set with the tests (for now at least, with the exception of a lactose test in a few weeks) so I plan to start the diet soon. Thanks again

my doctor saw the damage to intestines/duodenum <(SP!?) indicative of celiac, even though my blood testing was all negative - i was already gluten free dieting and she didn't put me on a gluten challenge because i was so malnourished.  so, yes, they can see the damage on the scope.   welcome to the best club you never wanted to join....       i know, it's so confusing!  start eating gluten free and in the beginning i would skip the dairy.  if your intestines are damaged enough to be visible, i bet your villi are toast right now, and that's where your body makes the stuff you need to digest lactose.  i think i quit dairy for 6 months until i could re-introduce it when i had healed some.  the dairy won't make you have a gluten reaction, but will make you heal more slowly.  good luck!