Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Scalloped Duodenum, Been gluten-free, Worried
0

14 posts in this topic

Hi there

Had endoscopy (1st one) having been gluten-free for 3-4 months (strictly). They found hiatus hernia, normal stomach and scalloping of duodenum. If I have been gluten free for 4 months does this mean I'm not healing? Very worried that this indicates refractory?

Can't take much more, feel very down...

Any help so very welcome.

As unfortunately this is my 1st endo I can't see if there has been any improvement, but the consultant said it was worrying findings if I had been gluten-free for so long... She biopsied too. I had positive bloods 4-5 months ago, it's take. This long to get an endo. Which is why I decided to go gluten free. Sorry for ramble, any any help welcome, thanks

0

Share this post


Link to post
Share on other sites


Ads by Google:

What are you eating? Have you gotten rid of all sources of contamination?

0

Share this post


Link to post
Share on other sites

Don't worry yet - depending on your original damage it can take a very long time to heal. Schedule a follow up endo at a year gluten-free - it is way to early to think Refractory Celiac Disease.

Have your antibodies improve during this time gluten-free? Have you had any symptoms improve? We all heal and improve at different rates.

Hang in there!

1

Share this post


Link to post
Share on other sites

How long have you had symptoms? The longer with a problem the longer healing. Many people are not completely healed in that time. I suggest testing for nutritional needs and supplementing, considering digestive enzymes, and check for other food intolerances. Then give it time.

Get well***

Diana

0

Share this post


Link to post
Share on other sites

Thanks guys

I have cut out dairy caffeine sugar. Eating mainly whole foods. Odd packet of crisps... Odd bit of dark choc (once a week) and have had some wine here and there. Eating whole natural food 95% of time. Lots of gi symptoms better but still have loose bowls. On vit d, iron, and complex b and probio's.

I have no idea how long I have had celiac, my doc thinks a while... Ferritin down to 2.4 (should be 40). I had symptoms creeping up on me for 3/4 years getting worse... But I don't know to be honest how long? 6 years or 20 I have no idea.

Is it normal for duodenum to be scalloped or does this indicate severe untreated celiac? Does celiac not affect the stomach at all?

:( very sad now

0

Share this post


Link to post
Share on other sites




Ps I do not even know what my antibodies were... Except that they were high. This country is difficult with regards to organising anything with doctors. My experience so far has been pretty useless.. Thank god for this forum.

0

Share this post


Link to post
Share on other sites

Please do not be sad. Knowing the extent of damage will be come a very good thing to have as you heal.

If you haven't had follow up blood work - get it soon - this will likely be much improved - even if not perfect yet. If you are not sensitive to cc or accidental gluten exposure - the DGP can let you know if you need to look for possible exposure.

I don't expect you to know how long damage was occuring - it is possible it was happening before you had any symptoms. The point is we all take time to heal completely - I would be surprised if anyone was completely healed that quickly - feel better yes - completely healed - no.

Hang in there and have whatever your favorite gluten-free indulgence is today - and turn that frown upside down - you will heal as your time gluten-free increases.

0

Share this post


Link to post
Share on other sites

Thanks GottaSki.

It's so disheartening to know there is damage in your body that you could have prevented. Even though I presented with lots of classic celiac symptoms at dx I just didn't truly believe that I was that damaged. Now from everything I've read it indicated that I have severe celiac disease. I know I shouldn't expect it to heal in 4 months but I'd just begun to feel much better so I feel like let down with my body I guess. I think the consultant that saw the damage said 'oh that's a lot of damage for 4 months gluten free, we wouldn't expect so much'...

This comment got me wondering about the refractory.

Does anyone know, is scalloping of the duodenum normal with celiac? Or only in severe celiac damage?

Could it be unrelated? I can't seem to find much out on it....

Thank you everyone, am forcing a happy happy attitude... Just.

0

Share this post


Link to post
Share on other sites

The scalloping is a fairly typical finding on biopsy. The degree often depends on how long you have been undiagnosed.

As Lisa says, it's way too early to be talking about refractory sprue. Healing is not something that happens instanteously as soon as gluten is withdrawn. It has taken you a long while to get where you are and it may take you as long to recover. Not to be a Debbie Downer, but for many of us that recovery journey is looked at in years, not months. So keep your expectations realistic. A follow-up blood test to see if your antibody levels are coming down would be more useful than a standalone biopsy with nothing to compare it to. What you want to see is a steady drop in your levels, not an amazing recovery -- which almost no one experiences.

0

Share this post


Link to post
Share on other sites

Thank you everyone, am forcing a happy happy attitude... Just.

Fake it :D until you make it - not making light - I've lived it.

0

Share this post


Link to post
Share on other sites

Thanks mushroom. Its just that I thought that I'd probably ignited my celiac 5 years with pregnancy ... And I suppose it's probable that it started way before. I'm disappointed I didn't listen to the little 'niggles' that I wrote off. I've never been one to complain or go to the doctors! (that's changed!). I will get my antibodies tested in the new year. I guess it'll be interesting to see what the biopsy shows... I'll be devasted if it shows total villi atrophy... Im hoping that at least my villi will have recovered... Especially since my iron levels have gone up with supplementation. Hey ho.

I've had a baaaaad day today.

Also, anyone have aches and pains in abdomen after endo procedure?? I'm getting some sharp twinges and aches! Ugh.

Thanks again lovely peeps :)

0

Share this post


Link to post
Share on other sites

GottaSki!

I like that! Fake it til you make it! That is just how I'm feeling. ;)

0

Share this post


Link to post
Share on other sites

Also, anyone have aches and pains in abdomen after endo procedure?? I'm getting some sharp twinges and aches! Ugh.

Thanks again lovely peeps :)

I did have some sort of pain after the endo procedure! It was especially painful when I bent over or laughed. It only lasted a couple of days, though. :D

0

Share this post


Link to post
Share on other sites

@confused123

I'm glad you said that, that's like me. Though I can still feel some pain without laughing (haven't done much laughing today as I'm feeling sad and grumpy) but I've been doing household chores, :( and the bending has hurt! Thank you...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,125
    • Total Posts
      919,503
  • Topics

  • Posts

    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,163
    • Most Online
      1,763

    Newest Member
    Haley Wallbrown
    Joined