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Flattened Villi

Jessica N.

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Jessica N. Rookie
Jessica N.
Posted

I am trying to get my ducks in a row for my GI appt in a few weeks. (I have just switched to a new Dr.) I am curious if anyone knows what else could be a cause of flattened villi. The first test I has my transglutaminase AB, IGA was a 39 and the "normal" range is 0-19 so I was scheduled for a biopsy which showed flat villi, biopsies came back negative. The new doctor sent me for tests again and said my blood tests were slightly elevated (I don't know which levels, havent been back yet).

I am just curious about the causes of flattened villi besides celiac, and any suggestions of what types of question I should be asking the doc!

I appreciate any help!!

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Skylark Collaborator
Skylark
Posted

I don't understand your statement "biopsy which showed flat villi, biopsies came back negative". How is flat villi negative?

The combination of transglutaminase antibodies and villous damage is the "gold standard" for diagnosing celiac. The other things that cause flat villi (giardia, radiation poisoning, tropical sprue) do not cause celiac antibodies.

Have you gone gluten-free now that you're done with the biopsy and blood tests?

Twinklestars Contributor
Twinklestars
Posted

I would think you should be positively diagnosed as celiac with those results. Maybe if your doctor isn't willing to diagnose you (no idea why not though) get copies of all test and lab reports and keep them as your proof. And go gluten free for sure!

Roda Rising Star
Roda
Posted

With a postitive blood work and flattened villi, that is classic celiac diagnosis. Maybe they meant the biopsy was negative for other things, like h pylori and cancer.

Jessica N. Rookie
Jessica N.
Posted
  • Author

I apologize...I meant to say my ENDOSCOPY showed flat villi, the biopsy came back negative. At my follow-up I asked why I was given a packet about celiac after my procedure, and the NP stated: The Dr thought with those two things it would have been celiac. I said well flattened villi are not normal, and she said not to dwell on it and suggested an elimination diet for lactose, fructose, and eventually gluten if I wanted.

Jessica N. Rookie
Jessica N.
Posted
  • Author

I was only told biopsy negative and not told "you have celiac." I plan to go gluten-free next week to see if that helps and have transferred doctors.

ravenwoodglass Mentor
ravenwoodglass
Posted

I apologize...I meant to say my ENDOSCOPY showed flat villi, the biopsy came back negative. At my follow-up I asked why I was given a packet about celiac after my procedure, and the NP stated: The Dr thought with those two things it would have been celiac. I said well flattened villi are not normal, and she said not to dwell on it and suggested an elimination diet for lactose, fructose, and eventually gluten if I wanted.

False negatives on biopsies are not uncommon for a variety of reasons including human error at the lab. If you doctor could see the damage then it seems a no-brainer to me. Do be strict with the diet and I bet your feeling much better soon.

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Lisa Mentor
Lisa
Posted

There are a few other things that can cause villious atrophy, but Celiac Disease is the most common. Celiac symptoms and positive dietary response can also be diagnostic.

Jessica N. Rookie
Jessica N.
Posted
  • Author

Thanks for your support! I plan to start next monday so will be searching for recipes and checking out the gluten-free section in my grocery store...any suggestions?

Twinklestars Contributor
Twinklestars
Posted

Everyone here has been advising me to stick to a simple whole foods diet that consists of rice, vegetables, fruit and meat mostly. Try to avoid processed foods. I felt very unwell for the first few days and didn't want complicated foods at all. Hope it has you feeling better soon!

Jessica N. Rookie
Jessica N.
Posted
  • Author

Everyone here has been advising me to stick to a simple whole foods diet that consists of rice, vegetables, fruit and meat mostly. Try to avoid processed foods. I felt very unwell for the first few days and didn't want complicated foods at all. Hope it has you feeling better soon!

I'm trying to get situated for the grocery store now...planning out my meals and such so I know what I can have. How are you feeling now---How many days has it been?

Twinklestars Contributor
Twinklestars
Posted

It's been about 10 days for me now. I'm feeling good :) Well, apart from accidentally glutening myself a couple of times :rolleyes: I figure it can only get better, but yes, much happier that I'm feeling well!

Jessica N. Rookie
Jessica N.
Posted
  • Author

It's been about 10 days for me now. I'm feeling good :) Well, apart from accidentally glutening myself a couple of times :rolleyes: I figure it can only get better, but yes, much happier that I'm feeling well!

Awesome! I am trying to figure out if my allergy medications and acid reducer are gluten free!

Twinklestars Contributor
Twinklestars
Posted

It's amazing the things gluten can be in! Before finding this forum I would never have thought of gluten in medication, or teabags for that matter! :huh: You can always speak to a pharmacist I guess or email the manufacturer to find out about meds.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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