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Biopsy Results Are In!

Electra

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Electra Enthusiast
Electra
Posted

Well I just got my biopsy results and I definitely have Celiac Disease. It's so nice to have a confimed diagnosis.

Even after being gluten free for almost 4 weeks my biopsy was positive. Here is what the letter from my doctor says.

Dear Angela,

The biopsy of your duodenum showed changes consistant with Celiac Sprue, although they were fairly mild. I would encourage you to continue on your diet and to continue your "detective work" when trying new foods. As I suggested at the time of the endoscopy, I think we should repeat your tissue transglutaminase (the blood test for celiac sprue) in four to six weeks to see how you are doing.

A lab slip was included with the letter so that I can have my blood re-drawn sometime between 2/28 & 3/14 to see if my antibody levels are decreasing.

WOW it's such a relief to finally know with 100% certainty what my issue is.

Thank you so much to everyone here who has given me support time and time again. I would never have made it through this without this board.

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cajun celiac Rookie
cajun celiac
Posted

I am happy that you have an answer. Even when a diagnosis is scary it is still better then the unknown.

I had a biopsy done last month that was "suggestive" of Celiac. I had blood work done last week and it all came back normal. So I am truly confused. I see my gastro next week so hopefully she'll shed some light. If I do have it, I want it to come back with flying colors. At this point I am almost hoping it is Celiac so that I don't have to go on wondering what the hell is wrong with me!

Good luck!

Electra Enthusiast
Electra
Posted
  • Author
I am happy that you have an answer. Even when a diagnosis is scary it is still better then the unknown.

I had a biopsy done last month that was "suggestive" of Celiac. I had blood work done last week and it all came back normal. So I am truly confused. I see my gastro next week so hopefully she'll shed some light. If I do have it, I want it to come back with flying colors. At this point I am almost hoping it is Celiac so that I don't have to go on wondering what the hell is wrong with me!

Good luck!

Hmmmmmm I don't get how a biopsy can be suggestive of celiac? Isn't a positive a definite positive? Maybe it was negative, but he saw signs that there had been damage there? I'd be confused to. Are you still on gluten? If not then chances are that your blood tests would come back perfectly normal. Good Luck and I really hope you get some answers soon. The worst part is not knowing :(!!

jerseyangel Proficient
jerseyangel
Posted

Hi Angie,

I'm glad you got your answer. We're here for you :)

AmandaD Community Regular
AmandaD
Posted

Man, you have a great doctor!

Yenni Enthusiast
Yenni
Posted

Nice to get a 100% answer like that. Know what it is for sure.

babygirl1234 Rookie
babygirl1234
Posted

yes a biopsy can conf celiac disease or not but to get it conf you need to have blood work done to make sure

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happygirl Collaborator
happygirl
Posted

Angie:

Congrats on having the "gold standard" of a Celiac diagnosis!

Laura

PeggyV Apprentice
PeggyV
Posted
I am happy that you have an answer. Even when a diagnosis is scary it is still better then the unknown.

I had a biopsy done last month that was "suggestive" of Celiac. I had blood work done last week and it all came back normal. So I am truly confused. I see my gastro next week so hopefully she'll shed some light. If I do have it, I want it to come back with flying colors. At this point I am almost hoping it is Celiac so that I don't have to go on wondering what the hell is wrong with me!

Good luck!

I feel your pain. I have not been able to get a confirmed diagnosis, but the diet works for me so.....

Good luck

Peggy

rez Apprentice
rez
Posted

Awesome for you!!!! I think this is a sign to be encouraging to people when seeking a diagnosis. It makes things soooo much easier and I'm glad you feel better. Way to go!! It also goes to show that there are many wonderful doctors out there! So happy for you and your family!!!

darlindeb25 Collaborator
darlindeb25
Posted

I glad you have the answer finally.

Electra Enthusiast
Electra
Posted
  • Author

Thank you everyone for your encouraging answers and thoughts. I'm so glad I fianlly know what I'm up against and the diet is working very well for me so far. My entire household is beginning to change for the better. Thank you so much to everyone here who has helped me through my panic stages.

I really wish everyone could get a diagnosis as easily as I did, but I do not wish that everyone had to go through the pain and sickness that I went through. I feel so badly for those that can't seem to get it in writing. It's not really that "important" for most of us, but it is truely a HUGE relief just to have it confirmed. I know I would have stayed gluten free no matter what, but It's just so much easier to do it diligently when I KNOW with 100% certainly what the consequences will be if I don't stick to the diet.

Good Luck to everyone here!! For those of you who haven't been able to get a difinitive diagnosis I just want to let you know that you guys are AWESOME for recognizing it and sticking with what you know if right for you. Too bad doctors wouldn't just diagnose you on symptoms and diet changes alone. Maybe some day that will be possible, but until then hopefully we'll all continue to educate others on Celiac.

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  • Posts

    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      MY BIOPSY WAS NEGATIVE!!!  HOW?? Obviously I'm thrilled it was negative, but I'm so confused now.  
    • trents
      Virus, celiac disease or both?

      By trents · Posted

      First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten Sensitivity).  Second, though I think your question other question has already been answered. Since the tTG-IGA antibody test is only 90 to 98% specific, elevated values for this test will be have non-celiac disease causes in 2 to 8 out of 100 cases. I realize that is addressing your question in a general way but the non-celiac causes have also be covered in this thread, though not to  the granularity of giving percentages to each non-celiac cause. Not sure why that is important to you at this point. First, you need to separate whether it is due to celiac disease or not. If not, then start sorting out what the other cause is. But as I stated above, by far the most likely cause is celiac disease so that is the place to start. Sure, we get it. Having  to eliminate gluten from your life spells huge culinary and social changes and challenges. But it's still better than facing cancer or host of other diseases that less definitive antidotes and outcomes. With celiac disease you don't even have to worry about taking medications because, as of now at least, there are none. The treatment is very straightforward. Avoid gluten.
    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      @trents This info is so helpful and I’m absorbing it all. My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vitamins and minerals compromised. None of it. To me it was just an allergy to gluten.  My close family and friends think I’m crazy for even giving it a second thought because “no symptoms, no worries.”  It’s unfortunately hard for me to let something go that I don’t know enough about. Therefore all the research came into play.  I’m glad I’ve joined this forum. It’s more helpful to talk things through with people than looking through cases studies without being able to ask questions. I’m on the fence right now on what my odds are. I don’t know enough about the other variables and probability of why a TTG level would be raised.  The questions I still have lingering are:  -what are the odds that these levels are raised in something other than celiac? For instance of all positive TTG tests that have been done how many of those are from celiac? I know it’s a big ask but to me that’s something that is super unclear to me.  - what are the TTG levels in something other than celiac? (I.e. in things like type 1 diabetes, rheumatoid arthritis, hepatitis, viruses, NCGS, etc, are the TTG levels the same as those that have celiac, higher or lower?)  - even if it’s not celiac and it’s NCGS, if my body is “responding” to gluten, and creating antibodies to it, wouldn’t that be something to avoid anyway? Maybe not doing the damage but still my body doesn’t like it?  -could I really possibly follow a gluten free life as close as I follow Jesus?  Definitely understand now that key piece of needing an EGD. It’s looking at things from another angle. Also with all the other associated blood work, more angles.  I would like to say please forgive me if any of my questions seem as though I’m trying to be difficult. Making lifelong decisions is hard.  I do have decisions to make as you have said. I clearly will need convinced in order for this to be something to be committed to.  I would hope that there will be something in the future that comes out that will offset gluten in bodies the same was it does for sugar in diabetics.  My compassion is far greater for anyone carrying the burden of celiac than it was a month ago knowing what I know now.  I appreciate you helping me work this out, in real time. It’s been lonely up to this point. Only me talking about what I’ve read to people who don’t think I should be bothering with it any further. 😆 So thank you! 🙏            
    • trents
      Probably celiac but also confused

      By trents · Posted

      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
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