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Do I need further testing or do I know I have Celuac?

Estes

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Estes Contributor
Estes
Posted

I have had anemia for years.  Recently I had brain fog, headaches, nausea, and fatigue.  My Iga came back >100.0 H positive.  Igg 7.1H weak positive.  Dr. Said this is because I naturally prefer rice so it was a weak positive.

My question is this.  Do I have celiac?  I am changing everything about my life based on the above numbers which I don't totally understand.  Dr. Told me to go to the grocery store and "see you in a month for your annual physical".  

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SLLRunner Enthusiast
SLLRunner
Posted

What are all the celieac blood tests he did?

What was the doctor's interpretation of the blood tests?

Have you had an endoscope?

I am concerned by your doctor's comments because it sounds like he/she blew you off. I didn't know rice could affect the results of the celiac blood tests.

I believe if you test positive on any of the celiac blood panel it warrants further testing.  As for you are celiac, only complete testing can tell you that, and an endescope with 4 to 6 tissue samples of your small intestine is the gold standard.

Do not stop eating gluten until all testing is complete because then it can render a false negative. 

sdlane Rookie
sdlane
Posted

I agree with Runner.....DO NOT STOP EATING GLUTEN.  In fact, eat more.  Sounds like a primary care physician told you all this?  Demand a referral to a Gastroenterologist and get that endoscopy....but have it done a few months after you've started eating gluten again.  Knowing or not knowing is truly a life or death decision.  I had 12 biopsies and was diagnosed easily at Marsh 3a before I even did the blood tests.  Best wishes to you!  ❤️

Estes Contributor
Estes
Posted
  • Author

I was diagnosed last Tuesday after my spaghetti lunch so "gluten free" is only somewhat pertinent to my diet as it is all less than a week ago I knew nothing of all this.  What I hear you say is "start eating gluten again and request an endoscopy with a gastroenterologist".  

It was a primary care physician.  You are correct.  The test I had was Tiss. Transglutaminase Ab Prof. (IgG, IgA).  Both came up positive so I believe my Dr. Felt we had enough info.  You disagree, am I correct?   

I just want to do the right thing.  I appreciate your input and I assume that since you have already crossed this bridge that you know more than my new Dr.

SLLRunner Enthusiast
SLLRunner
Posted
1 hour ago, Estes said:

I was diagnosed last Tuesday after my spaghetti lunch so "gluten free" is only somewhat pertinent to my diet as it is all less than a week ago I knew nothing of all this.  What I hear you say is "start eating gluten again and request an endoscopy with a gastroenterologist".  

It was a primary care physician.  You are correct.  The test I had was Tiss. Transglutaminase Ab Prof. (IgG, IgA).  Both came up positive so I believe my Dr. Felt we had enough info.  You disagree, am I correct?   

I just want to do the right thing.  I appreciate your input and I assume that since you have already crossed this bridge that you know more than my new Dr.

Estes, 

I am sorry, but I'm very confused. Your first posting asked if you have celiac, and this posting you say you were diagnosed.

Diagnosed with celiac? If not, diagnosed with what?

Estes Contributor
Estes
Posted
  • Author

I apologize for being confusing.  I received my diagnosis of celiac based only on a blood test.  I am both doubtful and in denial.  According to my family doctor, I have Celiac, no further testing needed.  I want to know for sure.  Can a blood test be that sure?

cyclinglady Grand Master
cyclinglady
Posted

Estes,

A positive celiac blood test means the next step is getting biopsies 4 to 6 tissue samples of the small intestine via endoscopy.  This is done by a GI (Gastroentrologist).  A biopsy is required for a celiac diagnosis.  This step is sometimes skipped if it is a child.  

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Are you in the U.S? 

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SLLRunner Enthusiast
SLLRunner
Posted
5 hours ago, Estes said:

I apologize for being confusing.  I received my diagnosis of celiac based only on a blood test.  I am both doubtful and in denial.  According to my family doctor, I have Celiac, no further testing needed.  I want to know for sure.  Can a blood test be that sure?

Oooohhhh, gotcha.

You are wondering if you need further confirmation of being celiac.

The endoscope is the golden standard for celiac diagnosis (see Cycling Lady's post prior to mine).

I suggest you ask your doctor to refer you to a GI doctor who specializes in celiac disease, because that doctor will know what to do. 

Estes Contributor
Estes
Posted
  • Author

You got it!  That is my question.  I have e-mailed my clinic requesting an endoscopy.

I am in the US.  Rochester, Minnesota. Do you know if I need to eat gluten for an endoscopy if I have been gluten free for a week?  I know my city has fabulous resources for Celiac.  They are at Mayo Clinic.  That is not where I am at. 

Thank you all so much!

cyclinglady Grand Master
cyclinglady
Posted

Start eating gluten again.  You must be on gluten for 2 to 4 weeks prior to an endoscopy.  Luckily, one week of being gluten free should not harm your results.  Be sure to share this (gluten free for a week) with your new GI.  If your PCP balks, show him the University of Chicago's celiac website or the Mayo Clinic.  The endoscopy can check for other issues too and it can tell how much intestinal villi damage has been done.  

Estes Contributor
Estes
Posted
  • Author

PCP says that an endoscopy is not necessary because both blood tests came back positive and one was very high.  I suppose not having to go through an endoscopy has the benefit of not having to endure an endoscopy.  

Thank you all!  I may be too fatigued to fight this out with my PCP.  

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