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Second Opinion?

susanac70

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susanac70 Newbie
susanac70
Posted

I have been having abdominal/gastrointestinal symptoms for almost 3 yrs. I have had every test under the sun - all of which come back negative. Have been to my PC and a Gastro specialist. On my own, I decided to go gluten free after reading about how gluten can cause similar problems. Within about a week all of my symptoms went away and was feeling like myself again. It was then that my PC did blood work for Celiac. Big surprise, my test came back negative.

My question is - after being gluten free can the blood test give a false negative? Should I get a second opinion? My PC said that just because I'm off gluten now the test still would have been positive if I did have Celiac.

Help!!!

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ShayFL Enthusiast
ShayFL
Posted

Yes it could have been a false negative. Some people have severe symptoms of Celiac, but negative blood, then POS biopsy and get dx. Some have NEG blood and BIOPSY but respond to to the diet and get dx that way. Some have a celiac gene and positive response to the diet.

The most important thing is you discovered what your problem is....gluten!!

Celiac or an intolerance the cure is the same.......gluten-free diet.

susanac70 Newbie
susanac70
Posted
  • Author

Thank you for your response.

Should I be concerned about any intestinal damage or should I just be happy that I'm feeling better and continue with my new diet changes?

I never thought I'd feel 'normal' again!

sbj Rookie
sbj
Posted

Hasn't your gastro already checked you out for intestinal damage? Haven't you had an endoscopy or colonoscopy yet? If you have been complaining for three years and have had every test under the sun but your gastro never checked with celiac blood panel or endoscopy/colonoscopy I would get a new intern and gastro - quick! Your docs haven't been doing their jobs. You need to see someone else.

You might not have celiac - that is most likely. The truth is the blood panel is accurate for most people. You might be gluten intolerant. There is no 'cure' but you have already resolved symptoms by going gluten free. I suggest you stick with it.

Congrats on figuring things out and getting some relief!

susanac70 Newbie
susanac70
Posted
  • Author
Hasn't your gastro already checked you out for intestinal damage? Haven't you had an endoscopy or colonoscopy yet? If you have been complaining for three years and have had every test under the sun but your gastro never checked with celiac blood panel or endoscopy/colonoscopy I would get a new intern and gastro - quick! Your docs haven't been doing their jobs. You need to see someone else.

You might not have celiac - that is most likely. The truth is the blood panel is accurate for most people. You might be gluten intolerant. There is no 'cure' but you have already resolved symptoms by going gluten free. I suggest you stick with it.

Congrats on figuring things out and getting some relief!

Yes, I did have an endoscopy and a colonoscopy - a year apart. Endo showed some polyps that were removed and came back negative also showed some irritation from GERD but otherwise normal. Colonoscopy was negative but did show some irritation (???). I don't know that they were looking specifically for Celiac but would assume if I had it something would have shown, right? Didn't have the blood work until last month and had already been gluetn free for about 2 1/2 weeks. It was only done after I mentioned to the Dr. that I stopped eating gluetn and was symptom free.

Both endoscopy and colonoscopy were ordered by my PC. Was sent to Gastro Dr after everything came back negative. Gastro Dr. was looking for cancer and gave me anti-depressants (prozac). That made me feel as if they thought I was nuts.

sbj Rookie
sbj
Posted
Yes, I did have an endoscopy and a colonoscopy - a year apart. Endo showed some polyps that were removed and came back negative also showed some irritation from GERD but otherwise normal. Colonoscopy was negative but did show some irritation (???). I don't know that they were looking specifically for Celiac but would assume if I had it something would have shown, right? Didn't have the blood work until last month and had already been gluetn free for about 2 1/2 weeks. It was only done after I mentioned to the Dr. that I stopped eating gluetn and was symptom free.

Both endoscopy and colonoscopy were ordered by my PC. Was sent to Gastro Dr after everything came back negative. Gastro Dr. was looking for cancer and gave me anti-depressants (prozac). That made me feel as if they thought I was nuts.

When you asked whether you should be concerned about physical damage to intestine it sounded as if your doctors hadn't already checked for that. By scoping you from both ends they were looking for physical damage so you might be okay. Also, the celiac blood panel usually correlates to villi damage as well. So it sounds to me as if your docs have already looked for intestinal damage and haven't seen much - but DON"T TAKE MY WORD. If you are worried then you need to ask your doctor again, okay?

Damage is not always present or easily identified but it sounds as if your doctors are doing what they should (at least now they are). If you are worried about the other things that might come with celiac then I suggest, again, visiting with your doctor and asking for some further testing. It might be hard to justify based on your test results but you could at least tell him/her that the diet is helping so you are concerned you still might have celiac. Check blood for vitamin deficiencies, tell doc about any symptoms that might be related to other auto-immune conditions (type I diabetes, RA, thyroid disease), ask about CBC, ask about bone density test, inquire about urine cytology and blood work for cancer cells.

The blood panel should be okay and accurate if you had only stopped gluten for two to three weeks. The immune system response would outlast that amount of gluten-free time.

I'd suggest staying gluten-free, talking to your doctor again about the things that sometimes go along with celiac and getting additonal testing for those things if possible, and then doing your blood work again in 6 months and doing a colonoscopy/endoscopy again in a year's time to see if damage is healing. Since you had polyps removed this time your doctor should be willing to re-test in one year.

It's a pity that you had to figure this out on your own ... But you did so congrats! And now you are better so stick with it. If you feel better by going gluten-free then you really don't need any other confirmation.

I would also try to switch to a different gastro as he/she sounds like a moron. Prozac because your stomach hurts? That's just ridiculous! Why would they feel you are nuts when your endoscopy showed GIRD and your colonoscopy showed irritation?

A second opinion is never a bad idea. In this case you already know what is helping so stick with it. It won't hurt you.

ShayFL Enthusiast
ShayFL
Posted

Since you had a POS response to the diet, then you could ask for a Genetic test for Celiac genes. It is not diagnostic, but one more piece to the puzzle. And if you have the genes, it might keep you on your diet better. You want to maintain your good results!!

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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