endo. results - confused!

[Fbmb]

Hi Everyone! I got my results back from my endo, and needless to say, I'm more than confused. And I'm scared. I don't know what they mean, and all my doctor said was "start a gluten free diet and come back to see me in January...."

Mostly I'm just freaked out by the terminology. I'll tell you what it says, and maybe someone can help me interpret, because going to Google wasn't helpful at all.

Diagnosis: "Duodenal mucosa with intraepithelial lymphocytosis, villous blunting, and crypt hyperplasia"

Microscopic definition: "villous architecture shows patchy flattening with isolated areas of residual blunted villi. The underlying enteric crypts are hyperplastic. The lamina propria is expanded by chronic inflammation including lymphocytes and plasma cells. There is a marked increase in the number of intraepithelial lymphocytes with greater than 40 lymphocytes per 100 epithelial cells. Brunners glands are identified. Organisms are not identified."

All I see is lymph.... and hyperplasia and hyperplastic which immediately made me think of cancer and I started panicking. Is this just a typical finding with celiac patients when they're first diagnosed? I am reading books and researching about celiac, and I've read that untreated celiac can cause cancer - so of course. I am 29 and I hate that this disease has been wreaking havoc on my insides all this time and I didn't know until now.

 

Can anyone provide some clarity? 

[squirmingitch]

Whoaaaaaaaaaaaaaaaaaaaaaaaaaa, settle down. Breathe, just breathe. You're going to be fine. I can interpret most of it and it sounds pretty close to every other celiac pathology report I have seen. Lymphocytes are just a form of small leukocyte (white blood cell) with a single round nucleus. Doesn't mean lymph cancer okay? Intraepithelial means within the layer of cells that forms the surface or lining of an organ -- the small intestine is the organ in this case.

Okay, are you a little calmer now? Think about this too..... if you had cancer or even a suspicion of, the doc would not have let you go until January. He told you to go gluten free b/c he knows your pathology is positive for celiac disease and he's just going to do a follow up from the endoscopy in January. He'll most likely just say (duh) you have celiac disease and again tell you to eat gluten free. He might refer you to a dietician. 

Welcome to the club! 

Please be sure to read the newbie 101

 

[Fbmb]

1 minute ago, squirmingitch said:

Whoaaaaaaaaaaaaaaaaaaaaaaaaaa, settle down. Breathe, just breathe. You're going to be fine. I can interpret most of it and it sounds pretty close to every other celiac pathology report I have seen. Lymphocytes are just a form of small leukocyte (white blood cell) with a single round nucleus. Doesn't mean lymph cancer okay? Intraepithelial means within the layer of cells that forms the surface or lining of an organ -- the small intestine is the organ in this case.

Okay, are you a little calmer now? Think about this too..... if you had cancer or even a suspicion of, the doc would not have let you go until January. He told you to go gluten free b/c he knows your pathology is positive for celiac disease and he's just going to do a follow up from the endoscopy in January. He'll most likely just say (duh) you have celiac disease and again tell you to eat gluten free. He might refer you to a dietician. 

Welcome to the club! 

Please be sure to read the newbie 101

 

That's what my husband told me too. He said that if my doctor (who is an awesome GI in Denver) or the pathologist saw anything that looked like cancer in my biopsies they'd never say "Yep, you sure do have celiac. Call us in January". But I have major health anxiety. You guys will see me on here frequently. I've always been a super healthy kid/adult, and this has thrown me for a loop. I have a significant family history of celiac (3 out of 5 of my mom's siblings have it), but I never thought I did. I just found out that I have it and my toddler has it. And it's been so overwhelming. I was raised around a ton of illness (none related to celiac) so I have major hypochondria. I see a therapist and I'm honest about it because it provides some context for as to why I get so amped. I asked my GI's medical assistant to please not send me anymore lab results. I don't know what they mean and I don't understand them. I just knew you guys could give me clarity. I just saw a lot of big scary sounding words, googled one, and panicked. I'm doing as much research as I can and it terrifies me that I've had this s$#&ty disease for 29 years and never knew - all the while packing my belly full of poisonous gluten that I loved. I didn't have any noticeable signs until a month ago. I'm just overwhelmed, and I'm sad. I'm sad for my toddler son. I also feel like an ass%$@# for being sad because we have the only autoimmune disease that is totally controlled by diet. It's not easy, but at least we know what triggers us and we can live healthy lives because we're gluten-free. My GI said that celiac patients have the same life expectencies and quality of life that everyone else has - maybe even better because we're not eating a bunch of processed garbage. But still, I'm bummed and I'm coping the best I can.

 

thanks for listening. I'll check out the newbie stuff. 

[squirmingitch]

I understand. I just thought I might be able to bring you back down to earth. LOL! My husband has unbelievable anxiety & I know how fast people can shoot to the moon & beyond and sometimes it can take sort of a verbal slap in the face to get through the person's "anxiety brain moonshot".

Wait, don't think you've had this for 29 years. We aren't actually BORN with it. We are born with the genetics but the timing on when it presents is a completely different matter. We don't know exactly how long you've had it. We do know that a month ago you had symptoms. You could just as easily have begun presenting with it at that time rather than a year, two years or 15 years ago.

We're here for freak outs, hand holding as well as celebrating. We've all been there.

 

[Fbmb]

What if I have had it all this time? Looking back, I've had symptoms but didn't realize it. I have terrible anxiety, dry skin, mood issues, etc. My GI issues are recent, but looking back I've never really been "regular" - at least in my 20s. The longer you have it, does it do more damage? Does this open the door for other autoimmune diseases? Is the damage totally reversible with the gluten-free diet? 

I live in little Wyoming, so I don't have access to a great dietitian. I just have you guys, my aunt who has it, and books...oh, and the internet :/ 

[squirmingitch]

Let me put it this way..... Us old geezers who didn't get dx'd until we were in our 50's & 60's get well when we know we've had it for ohhhhhhhhhhh 30, 40, 50 years or more. You're 29, that, believe it or not, is young. The younger one is the faster you heal. QUIT obsessing!!!!

7 hours ago, Fbmb said:

My GI said that celiac patients have the same life expectencies and quality of life that everyone else has - maybe even better because we're not eating a bunch of processed garbage. But still, I'm bummed and I'm coping the best I can.

You wrote that. You've said what an awesome GI he is. STOP gnawing on this bone! Geez, I ought to throw you & my husband in a paper bag together & let you try to out scenario each other.

No problem with the dietician thing. We are here and you have your aunt. Take a look around the site at the different forums. Ask anything, anytime. We help each other here.

[RMJ]

There is a whole spectrum of damage that is seen in celiac disease.  Looking at your results another way:

"Patchy flattening" - Only patchy, not all over, Yeah!

"Isolated areas" - Isolated, not all over, Yeah!

"Blunted villi" - Only blunted, that's great.  You still have villi.  In some people the villi are totally atrophied.

"40 intraepithelial lymphocytes per 100 epithelial cells" - That's part of the classification of even the mildest levels of celiac disease.

"Hyperplasia" - That is seen in all but the mildest classification of celiac disease.

Your results are normal for celiac and are milder than those of some people.  Go gluten free and get ready to heal!

[Fbmb]

1 hour ago, squirmingitch said:

Let me put it this way..... Us old geezers who didn't get dx'd until we were in our 50's & 60's get well when we know we've had it for ohhhhhhhhhhh 30, 40, 50 years or more. You're 29, that, believe it or not, is young. The younger one is the faster you heal. QUIT obsessing!!!!

You wrote that. You've said what an awesome GI he is. STOP gnawing on this bone! Geez, I ought to throw you & my husband in a paper bag together & let you try out scenario each other.

No problem with the dietician thing. We are here and you have your aunt. Take a look around the site at the different forums. Ask anything, anytime. We help each other here.

I like you! It's all really overwhelming. I do appreciate your support and your laid back attitude. I am crazy.

[Fbmb]

59 minutes ago, RMJ said:

There is a whole spectrum of damage that is seen in celiac disease.  Looking at your results another way:

"Patchy flattening" - Only patchy, not all over, Yeah!

"Isolated areas" - Isolated, not all over, Yeah!

"Blunted villi" - Only blunted, that's great.  You still have villi.  In some people the villi are totally atrophied.

"40 intraepithelial lymphocytes per 100 epithelial cells" - That's part of the classification of even the mildest levels of celiac disease.

"Hyperplasia" - That is seen in all but the mildest classification of celiac disease.

Your results are normal for celiac and are milder than those of some people.  Go gluten free and get ready to heal!

Really? I just don't know anything. I assumed it was all really severe. When I asked my doctor he said I had some pretty significant damage. But he is also laid back. This is all so new to me,  and I hate that they sent me my report. Too many big words! 

[Fbmb]

So blunted is less damaging than atrophy?

[RMJ]

15 minutes ago, Fbmb said:

So blunted is less damaging than atrophy?

Yes, blunted is less damaged than atrophy.  Blunted villi are shorter than normal, but they are there and available for absorbing nutrients.  Atrophied villi are basically gone - the surface is flat with no villi projecting out.

[squirmingitch]

Great info. from RMJ. 2 thumbs up for her!

Fbmb, I'm surprised there wasn't a Marsh stage rating on the report. They usually "grade" it by a "Marsh stage classification". Ah ha! Here's a nice explanation of the Marsh classifications:

Open Original Shared Link

So let me see if I can kind of glean (I'm not a doctor so take it for what it's worth) an idea of where you might stand on the rating classification.

I'm thinking it's somewhere between Marsh Stage 2 & Stage 3a. You may be solidly in Stage 2 & not even in Stage 3 at all. That's just my take on it & as I said, I'm not an expert. I can say you certainly aren't a Stage 3c or a Stage 4! So Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyyy!!!!!!!!!!!!!!!!!!!!!!!!

 

As to the crazy part.....

Hey, I doubt there is a one of us here who didn't get more than a little crazy when we found out we had celiac disease. You're actually ahead of most of us in that regard due to you actually knowing something about it with your family members having it. Most of us just kind of got gobsmacked out of nowhere. Most of us had never heard the word "celiac" before. If there's one of us who didn't have at least one meltdown crying jag in the grocery store then I would be very surprised. I remember desperately posting on this board, "What am I going to eat for breakfast????!!!!!" Only in my mind I was screaming it at the top of my lungs. I could only think one meal at the time and I was panicked, completely panicked. Oh, and pity parties.... everybody has thrown at least one pity party for themselves. 

So we know what you're thinking. This too shall pass. You're going to be terrific!

[Kasalena]

1 hour ago, RMJ said:

Yes, blunted is less damaged than atrophy.  Blunted villi are shorter than normal, but they are there and available for absorbing nutrients.  Atrophied villi are basically gone - the surface is flat with no villi projecting out.

Hey, and guess what? The tissue regenerates!

[Fbmb]

42 minutes ago, squirmingitch said:

Great info. from RMJ. 2 thumbs up for her!

Fbmb, I'm surprised there wasn't a Marsh stage rating on the report. They usually "grade" it by a "Marsh stage classification". Ah ha! Here's a nice explanation of the Marsh classifications:

Open Original Shared Link

So let me see if I can kind of glean (I'm not a doctor so take it for what it's worth) an idea of where you might stand on the rating classification.

I'm thinking it's somewhere between Marsh Stage 2 & Stage 3a. You may be solidly in Stage 2 & not even in Stage 3 at all. That's just my take on it & as I said, I'm not an expert. I can say you certainly aren't a Stage 3c or a Stage 4! So Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyyy!!!!!!!!!!!!!!!!!!!!!!!!

 

As to the crazy part.....

Hey, I doubt there is a one of us here who didn't get more than a little crazy when we found out we had celiac disease. You're actually ahead of most of us in that regard due to you actually knowing something about it with your family members having it. Most of us just kind of got gobsmacked out of nowhere. Most of us had never heard the word "celiac" before. If there's one of us who didn't have at least one meltdown crying jag in the grocery store then I would be very surprised. I remember desperately posting on this board, "What am I going to eat for breakfast????!!!!!" Only in my mind I was screaming it at the top of my lungs. I could only think one meal at the time and I was panicked, completely panicked. Oh, and pity parties.... everybody has thrown at least one pity party for themselves. 

So we know what you're thinking. This too shall pass. You're going to be terrific!

Now that you say that, there is a staging on there. It says 3b. It says "the histological changes in this biopsy are type 3b. What does that mean????

[Fbmb]

Ok, I just went to the link you posted. The pathologist said that I'm at 3b, but then talked about my biopsy like it's more in the 2 stage. 

In Marsh Score Stage 2, you see more lymphocytes than normal (just as in Marsh Score Stage 1), and you also see bigger depressions than normal between the intestinal villi.

 

These depressions are called "crypts," and larger-than-normal crypts are called "hyperplastic," so if your pathology report following your biopsy says you have "hyperplastic crypts" or "crypt hyperplasia," it simply means the depressions seen in your biopsy are bigger than they would be in a normal intestinal lining.

 

I guess it all depends on the pathologist too. So my question is, now that I know that I have this and I'm gluten-free, will this damage reverse itself? Will my villi come back and will the cells go away? Are we at a higher risk for developing lymphomas even if we're staying away from gluten?

[RMJ]

In most people the gluten free diet will reverse the damage, although it may not go all the way back to normal.  You're young so there is a good chance you'll heal completely - children seem to heal better than older adults, we'll hope you heal like a child!  Your toddler should heal up just fine.

Intestinal lymphoma is very rare.  Untreated patients with celiac have a higher than normal chance of getting it but it is still in the very rare range.  Healing on a gluten free diet reduces the chances.  I wasn't diagnosed until I was 57 and my villi aren't back to normal yet but I'm not worried about it.

[GFinDC]

Hi FBMB,

You got some good advice already,  Here's a little more free advice!

Starting the gluten-free diet it is best (IMHO) to stick to mostly unprocessed foods, eat all your meals at home (no restaraunts) stick to whole foods like meats, veggies, nuts, eggs, and fruits.  Stop all dairy for a few months as it is hard to digest dairy properly with the villi damage.

Healing can be slow so patience helps.  As you heal your gut will be able to absorb nutrients better and you should start feeling better.  You may find some of your anxiety fades away too.  Gut damage makes it hard for our body to get all the vitamins it needs.  You could ask your doctor to do a test for vitamins and see if you need to supplement any of them for a while.  After you been gluten-free a while a multivitamin may be all you need.

Once you start the gluten-free diet you are on your way to healing.  Knowing what the problem is gives you the power to do something about it.

[Fbmb]

13 hours ago, Fbmb said:

Now that you say that, there is a staging on there. It says 3b. It says "the histological changes in this biopsy are type 3b. What does that mean????

Is stage 3b a pretty common place to be when you're diagnosed?

[squirmingitch]

Yes, Stage 3 is where most celiacs fall upon diagnosis.

[Fbmb]

6 hours ago, GFinDC said:

Hi FBMB,

You got some good advice already,  Here's a little more free advice!

Starting the gluten-free diet it is best (IMHO) to stick to mostly unprocessed foods, eat all your meals at home (no restaraunts) stick to whole foods like meats, veggies, nuts, eggs, and fruits.  Stop all dairy for a few months as it is hard to digest dairy properly with the villi damage.

Healing can be slow so patience helps.  As you heal your gut will be able to absorb nutrients better and you should start feeling better.  You may find some of your anxiety fades away too.  Gut damage makes it hard for our body to get all the vitamins it needs.  You could ask your doctor to do a test for vitamins and see if you need to supplement any of them for a while.  After you been gluten-free a while a multivitamin may be all you need.

Once you start the gluten-free diet you are on your way to healing.  Knowing what the problem is gives you the power to do something about it.

I went to Sprouts on Saturday and bought lots of gluten-free foods, and cleaned out my cabinets. I work full-time and I like to have snacks at work, so I bought some Glutino pretzels, Nut Thins, a couple of the Dr. McDougall's gluten-free noodle cups, etc. I mostly eat leftovers for lunch, but sometimes I need something quick. Is it ok for me to eat crackers, pretzels, etc? Will it hinder my healing? They're all certified gluten-free, so I assume they're ok, but I know people say to stay away from processed foods. 

[GFinDC]

20 minutes ago, Fbmb said:

I went to Sprouts on Saturday and bought lots of gluten-free foods, and cleaned out my cabinets. I work full-time and I like to have snacks at work, so I bought some Glutino pretzels, Nut Thins, a couple of the Dr. McDougall's gluten-free noodle cups, etc. I mostly eat leftovers for lunch, but sometimes I need something quick. Is it ok for me to eat crackers, pretzels, etc? Will it hinder my healing? They're all certified gluten-free, so I assume they're ok, but I know people say to stay away from processed foods. 

Hi Fbmb,

Part of the idea of eating whole foods and avoiding the processed foods is to get better nutrient density/quality.  Your body has been starved of nutrients by the damage to your gut.  So feeding it nutritious foods is important to help the healing process along.  Many gluten-free processed foods are not very nutritious or good for you.  Think of them as empty calories.  Quality whole foods can provide your body vitamins and minerals that it needs while recovering.  Avoiding empty calories and carbs is a good thing for your body.  You can always add those things in a few months.  Or eat them sparingly now.  Boiled eggs and peanuts are a good snack.  Maybe some fruit like a navel orange or apple?

That being said, I  did find a recipe for sugar-free peanut butter fudge the other day.  Equal parts peanut butter, coconut oil, and a little stevia,  Mix it up and refrigerate.  Maybe use crunchy style peanut butter for texture.  I'll be making a tiny (hah!) bit of it for Thanksgiving in theory.