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Scalloped Duodenum, Been gluten-free, Worried


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#1 designerstubble

 
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Posted 15 December 2012 - 05:37 AM

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

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


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#2 dilettantesteph

 
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Posted 15 December 2012 - 06:08 AM

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

 
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Posted 15 December 2012 - 06:11 AM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 1desperateladysaved

 
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Posted 15 December 2012 - 06:13 AM

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
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#5 designerstubble

 
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Posted 15 December 2012 - 06:26 AM

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

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#6 designerstubble

 
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Posted 15 December 2012 - 06:29 AM

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

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#7 GottaSki

 
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Posted 15 December 2012 - 06:36 AM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 designerstubble

 
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Posted 15 December 2012 - 12:31 PM

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

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#9 mushroom

 
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Posted 15 December 2012 - 12:47 PM

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
Neroli


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#10 GottaSki

 
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Posted 15 December 2012 - 07:23 PM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 designerstubble

 
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Posted 16 December 2012 - 08:34 AM

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

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#12 designerstubble

 
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Posted 16 December 2012 - 08:37 AM

GottaSki!
I like that! Fake it til you make it! That is just how I'm feeling. ;)
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#13 confused123

 
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Posted 16 December 2012 - 08:55 AM

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
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#14 designerstubble

 
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Posted 16 December 2012 - 09:41 AM

@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

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)





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