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Biopsy Result At Last. Help Understanding It!


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#1 designerstubble

 
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Posted 05 January 2013 - 03:48 PM

Hello again
Received my biopsy results finally. My useless doctor could not interpret them for me properly and glossed over it by telling me I am now confirmed coeliac. Yep! Ok, thanks for that, lovely.

If any one could help... I'd just like to know what degree of damage I have. I have an idea of what it all means but being new just like some other opinions. I was gluten free for 12 weeks before endoscopy (did not reintroduce gluten for biopsy) and am obviously worried to see there is still damage. How much though?

Results:
Microscopy: duodenal mucosa and sub mucosa, some villi show are shorted, surface enterocytes show focal crowding and increase in intraepithelial lymphocytes, crypts are hyperplastic, lamina propia shows diffuse transmucosal moderate increase in inflammatory cell infiltrate.
Duodenum: scalloped
Oesophogus: hiatus hernia
Stomach: normal
Partial villious atrophy consistent with coelic disease. No neoplasia seen.

What's the damage guys? Could this be consistent with someone who's been gluten-free for 3 months? Anyone know what crypts are and what hyperplastic crypts are? (Sounds like a Muse track to me?!!)... Also diffuse transmucosal?
(I've typed it all in word for word, looks like there are some words missing??)
ANY help as always is greatly appreciated, muuuchas gracias.
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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 mushroom

 
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Posted 05 January 2013 - 04:12 PM

I am surprised there is still this much damage after three months of gluten free eating.

1. Scalloped duodenum - definite sign of celiac disease
2. Inflammatory cell infiltrate in lamina propria - sign of early celiac disease although can be caused by other conditions
3. Crowding of enterocytes and increase in intraepithelial lymphocytes - a sign of celiac
4. Hyperplastic crypts - found in celiac disease
5. Shorted (sic) villi - partial villous atrophy - sign of celiac disease.

Hyperplasia is an uncontrolled proliferation of a certain type of cell. Crypts are found on the wall of the small intestine which is covered by villi which are little finger-like projections. When these are "shorted" (I think they meant shortened :) ) there is damage.

Yes, you are one of us. Welcome to the club :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
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Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 designerstubble

 
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Posted 05 January 2013 - 04:27 PM

Awesome, thanks for that... (You certainly know your stuff. More than my doctor that's for sure!!)

Worrying then that there is still so much damage... ??

Should I have healed then by 3 months? I have been very strict. I have even been dairy free for last 2 months in my attempt heal.

Not sue what to do now... (If my diet doesn't seem to be working?)
Thanks again shrooom!
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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)


#4 mushroom

 
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Posted 05 January 2013 - 04:32 PM

No, no, not to worry. It's just that we are so used to people screwing up their test results by failing to keep eating gluten and affecting the outcome, turning positives into negatives; I'm not glad there was still damage, but I am glad there was enough to measure and give you the definitive result.

People have varying degrees of damage and rates of healing; some of us take years to fully heal so I am sure your diet is working. You just don't know how much damage there was before you stopped eating gluten :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 designerstubble

 
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Posted 05 January 2013 - 04:42 PM

Yes, I see! I did wonder if I'd get a false neg. but to be honest I was SO ill, and my useless doctor and local hospital spent nearly 4 months organising my endoscopy that I had to go gluten-free. (They couldn't organise teddy bears picnic honestly complete waste of space!)....(Secretly glad I did tbh).
Maybe I had total villious atrophy before? And I may have healed a little? I was really worried my biopsy tests would show that now (I thought scalloped duodenum meant villi wipeout)... I would've been really worried then. So I guess this is my starting point. Just have to keep on going! Ugh!
Massive thank you, you guys ought to start chat hong consultancy fees!!! ;) hugs
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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 05 January 2013 - 04:45 PM

Chat hong??? Should've said 'charging' lol!
Gotta love predictive!
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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 Skysmom03

 
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Posted 05 January 2013 - 05:08 PM

By the sound of it I would say you possibly did have total atrophy. My husband got really sick before they realized what his was. He got do sick they too went ahead and told him to start the diet. When they did his endoscopy two weeks later, he still have total atrophy. The doctor said it was one of the worst he had ever seen. I am not sure he could have lived another three days if he hasn't started the diet. Be thankful your doctors were sure enough to go ahead and let you begin the diet. Most wont suggest that, so they probably already knew the damage was extensive.
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#8 designerstubble

 
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Posted 05 January 2013 - 05:18 PM

Wow, your poor husband. I had bouts of severe illness too and extreme anaemia (ferritin 2.4), I was like a zombie. My doctors didn't allow me to go gluten-free, it was a risk I took. Gut instinct. (No pun intended!). They told me to stay on the gluten until endoscopy in 2 weeks. I waited 4 weeks, and watched as my notes were faxed emailed, to various consultants at the hospital, eventually lost and then pretty much ignored for another 3 months. I took the decision at the 4 week point to go gluten-free as I couldn't look after my little boy I was so sick.
I guess it's possible then I really did have villi wipe out. How is you husband now? How long gluten-free? Repeat endo yet? All the best and thanks
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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 GFinDC

 
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Posted 05 January 2013 - 05:26 PM

HI DS,

Scalloping does tend to mean serious damage. But they also said some shortening of the villi, so there must be areas that don't have total villi destruction. Keep in mind the endoscopy can only reach 5 or so feet into the small intestine, really just the beginning of it. There are 17 more feet they can't even seen. Those 17 feet may be in much better shape.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 Skysmom03

 
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Posted 05 January 2013 - 08:40 PM

He is pretty good! It has been a year and a half since he was diagnosed. He is finally able to gain weight. He also has type 1 diabetes so we always thought that was part of the reason why he always hovered around 145lbs. Then in April of 11 he got really sick for a week. Throwing up and D. We thought it was a virus. It cleared up but then it struck again on Memorial Day weekend. At that point he was probably 130lbs ( he lost 20 lbs with first illness). This time there wasn't as much throwing up but he went to the bathroom about 20-30 times a day or more. He has every test in the book. He was even scheduled for colonoscopy when finally after three more weeks his diabetic doctor ( this was the lab he had the blood test for the GI doctor) called and said... It looks like it could be celiac. By this time he was down to probably 105lbs. We stopped weighing a week and a half prior when he was at 115. He couldn't eat anything and was basically trying just ensure. He didn't even have to take much insulin because he couldn't eat anything and when he would get low it was forever before it would come back up. We if course had to wait for the GI nurse to call but I had already done my research about celiac. When she called us finally he had pretty much begun to lose his voice. He explained his weight inability to eat anything and she spoke with the doctor and he agreed that he could start the diet. It was very scary... I'll tell you that. To this day I have never understood why they never put him in the hospital. It was terrible because I basically was watching him starve to death. Anyway. With in three days he was gaining weight and thd bathroom issues were 90% better! He had some symptoms ( minor bathroom issues he didn't think anything of, seizures with low blood sugars, and during the year prior terrible smelling gas) but nothing that he would ever go to the doctor about. His GI said he has probably had celiac for many many years! Now he follows a strict diet and weighs 185lbs! He sleeps all night long and doesn't feel as tired.
Oh and we got my son (9)checked too at the advice of my husband's GI. And sure enough he has it too. He has about three years worth of damage according to the ped. GI. He had zero symptoms that were noticeable!
Well that is enough of my book, but it is a detailed story! :)
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#11 designerstubble

 
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Posted 06 January 2013 - 02:59 AM

Thanks gluten-free. Hope you're right, it's quite upsetting to think I am seriously damaged :( I have a suspicion a am damaged throughout the small bowel as I have pains in various same places. If I get irritated they hurt. I think this is the damage. I dunno, could be wrong but feel quite tuned into it.
Even if I have villi wipeout in some areas it's still possible to heal isn't it?
  • 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 06 January 2013 - 03:01 AM

Omg! This predictive on my phone! Sorry for all the typos!
I typed in 'thanks gluten-free' and it changed you to gluten free (which is probably what it stands for?!)
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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 designerstubble

 
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Posted 06 January 2013 - 03:10 AM

What a story Skysmom. I am so pleased he's getting better. It's strange because I had some of it happen similar. Though my bouts lasted 3 weeks each time. And I was going to the toilet 20 times per day. Lost lots of weight. But it came back on in between bouts. Also I had the terrible foul smelly gas for about 2 years before... Lots of tummy rumbling and noises, gas pain but I was never in agony as some on here describe so thought I had irritable bowel like my sister.

Had your husband had a repeat biopsy to check healing or blood work for antibodies repeated?

Also how did they test your son? My 6 year old complains of tummy aches (it's normally gas), and hates things like cereals... And catches every cold available even though we eat really healthily. I'm worried they'll do bloods and they'll come back negative as he has no 'real' symptoms.

Thanks for all your help, it's reassuring when you hear of persons healing up from serious damage. I feel much better as I have been on iron and my levels are going up ok so far. But am still having GI issues... (More now than when on gluten?)...

Any info greatly appreciated, especially concerning testing on your son. Thanks again
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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)


#14 Skysmom03

 
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Posted 06 January 2013 - 06:20 AM

On the hubby, no he hasn't been back to that dr because he hasn't been having any trouble in that area. He's has gained weight and has had no pains or other bathroom issues. In fact, according to my husband, he hasn't had any D since he started the diet. He goes to his diabetic dr every three months ( or more often than that -- he has had T1D for 35 yrs) and he has had extensive blood work each time, and do far no levels of any kind have come back concerning. I don't think they check antibodies though. He has no stomach aches, no gas ( never points anymore in fact), no weird colored poop. He was told that he would heal ( it is obvious he has because he has gained weight he never gained before because he wasn't getting all the calories he needed because his food wasn't being absorbed in his intestines), but that it may be more than a year or more before he was completely healed. He is doing well--- I hope I haven't jinxed him now!

My son- he doesn't look Celiac at all!!! It really was just a chance thing that we had him tested. I could of ignored Glenn's Dr and said 'he has no problems, he's fine', but I didn't. This past summer at his 9 yr physical we ( his ped and I )decided it would be best to check him. She totally agreed that he should be checked regardless of symptoms! She spoke of lymphomas and other problems that arise from untreated celiac, so we had no problems there. His antibody level came back a 25 ( a little above where they start to get concerned-- his GI said they begin to worry at anything over 19)so we were sent to a pediatric GI. He looked at him and said... No he doesn't look celiac. My son is solid not skinny at all. He said because he has some risk factors ( my husband, blonde hair, fair skin ... There would be a chance but he said only 10%). He said that some antibody test are not accurate so he did a more extensive test. This time his levels came back at 65. It was about a month and a half later - I don't know if he ate more gluteny items before that test or just because some time had past but regardless it wasn't a good sign. They scheduled the endoscopy for a week later. That went well. I was scared or course, but it needed to be done. His pediatric GI will not do an official diagnosis without the biopsy. I was no more scared than when he had his tonsils out!! Sure enough he had silent celiac sprue( no obvious symptoms with intestinal damage). As I said the doctor was surprised. He had partial atrophy. The doctor explained the villa like this ( which is probably because he is dealing with kids- adult drs probably font feel the need to explain it as well). The villa are like little fingers. Normal villa pick up the nutrients like fingers would and andorb them into your system. Skylar's villa were "chopped" off a little so they couldn't pick up the nutrients as easily- kind of like if you chopped half your fingers off-- it would be more difficult to pick up things. Basically after that that was it. We started the gluten free diet and we are due up for our first antibody test in February. He requested that his pedatrician do an antibody test every six months for now but said unless we were having issues he would see he wouldn't need to see him again. He has done really well on the diet. He is very concerned about eating things he shouldn't ( I think the drs said cancer one too many times to him). Every once in a while he will eat a snack at his after school program that he fist realize he could have ( like lays BBQ chips) but we talk about it and he now knows those things are off limits. He is 9 and is just learning about what he can and can't have... So there will be a learning curve. He had his Christmas party at school and he are very little ( the room mom told me this) because he was so uncertain about what he really could and couldn't have. This is a good thing I guess but it still made both of us feel bad... We did have things for him, but since I wasn't there to help he didn't want to take a chance. He is a trooper and has been really mature about it. Every once in a while he'll say. I miss burgers, zaxby's , etc. but then we talk about it and what could happen and he is fine!

His symptoms-- he had no obvious ones- if he had stomach aches he didn't realize it ( he didn't know his stomach shouldn't feel that way) no stomach issues serious at least. But once we started the diet he was a bit more perky! We thought he was calming down because he was getting older. So there were symptoms just nothing we could see. There were a couple of other things though... He has ADHD( he's been on meds since he was 5) and he has asthma..., both of those things are symptoms/ side effects of celiac disease. And we recently found out that he has a possibly learning disability in reading ( another side effect) his overall iq is 118 but his reading comp and memory both scored a 92 ( 20 pt difference signals LD--- but the psy at his school doesn't diagnose with just that ( I work at a school and my psy looked at results and said that he does have one--- so right now we are just monitoring and understand that he will probably not be making A's in reading. So I find that interesting. It explains a lot possibly!!

Overall both are fine, my advice to you is to insist on the testing. It is just a blood test. They shouldn't object if they really have an understanding of the disease and its genetic capacity. If they refuse, find another dr that will agree to it. Basically I would accept no. I would go in and insist upon it! I would say I want the test! It is your right to do that. You could always stoop to their level and threaten malpractice if something should happen to your child because they refused to give you a simple test. I know that sounds terrible but whatever you need to say to get those tests done. If that does work go to a pediatric GI ( if you can) and explain your situation. Surely they will test then. I would make sure it is a pediatrician or GI though. Not just some doctor that serves any person that comes off the street.

Well book two is now complete! Please ignore all my mistakes. I too did this on my phone!! 😄

Any help at all I don't mind helping. My name is Marti and my email is vagal74@aol.com if you'd like to email instead. Either way is good for me.
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#15 Skysmom03

 
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Posted 06 January 2013 - 06:24 AM

Oh and I forgot... At my sons first dr appt since his diagnosis ( he goes every three months because of his ADHD) he grew 3cm ( this was a month and a half after his celiac disease diagnosis) and his BMI had jump back to above normal. His BMI had started to drop in the prior year .... Even though he was gaining weight... And the celiac disease explains why!!) she was amazed at the difference a short period of time made in his growth!
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