Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anemia,then Scoped,path Report - Need Help

LauraD

Recommended Posts

LauraD Newbie
LauraD
Posted

Hi,

3 months ago I was dx'd with severe anemia. Put on iron supplements. Saw my GI doc and scheduled an EGD and colonoscopy to see if my anemia had any GI connection (personally I thought my anemia was menstrual related). Anyways, got a call from GI nurse and they said I needed a follow-up. She couldn't translate the path report and I can't see doc until this Tuesday Aug 29th so I went down and got a copy of path report.

It says: "Although the villous architecture appears rather unremarkable, the presence of marked intraepithelial lymphocytosis within the villous surface epithelium is suggestive of gluten-sensitive enteropathy or other immune-mediated disorders. Clinical and serologic correlation recommended"

So it kinda says it could be Celiac - right? Or is it saying it IS Celiac based on pathology of small intestine damage. It's pretty confusing and shocking to me because I wasn't expecting that they'd find anything and now that they have, what's next. I guess blood tests. Also what could "other immune-mediated disorders" be - Crohn's, etc???

Any ideas? input appreciated

Laura

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tiffjake Enthusiast
tiffjake
Posted

Hi Laura! Welcome to the board!

I think, and I am no doc, that it does say you have evidence of Celiac (gluten-sensitive enteropathy). But it also says that it could be something else (like you suggested, Crohns, etc). Have you had blood work done? The recomendation for "serologic correlation" sounds like a recomendation for blood work (the celiac blood panel).

Be careful, because if your doctor is going to order bloodwork, you DO NOT want to go gluten-free before the blood-draw. Even a week without gluten can give a false negative blood test. On the plus side, you have had the hardest part of the "testing" than many people deciede not to have, because they are so ready to get off of the gluten.

Sounds like you need a simple blood test to confirm Celiac (OR to rule it out and lead your doc to something else, like Crohns). But the biopsy is huge, and sounds like a "YES" to me. If I were you, I would make some mental notes about your health and how you feel (if there are symptoms for you, and for some people, there are not) when you eat gluten filled foods.

Do you have to run to the bathroom? Do you get headaches? Do you notice something different? I would make sure to share this with your doc (thus the report's recomended "clinical" correlation.) Be ready to answer those questions if your doc asks them.

Hope that helps! I don't know if you WANTED to hear that you have Celiac disease, or if you are totally bummed, but if you have been sick your whole life, hopefully with this new information, you will start to feel better and healthier!

LauraD Newbie
LauraD
Posted
  • Author

In terms of symptoms, that's the weird thing - I don't feel like I've really had any but maybe each time I thought I had a stomach bug it was actually a reaction to gluten? I do get headaches quite a bit and I always seem to have diarrhea right before my period starts. I've been attributing most of my odd feelings to being 41 now and thought that maybe perimenopause was coming. What other symptoms should I be noting. In terms of elimination I seem to either be diarrhea or constipation (usually the latter one). They did also say I had gastric polyps that were benign.

I have to be careful because I am a 10 year breast cancer survivor so I know that I have an increased risk for other cancers so I REALLY want to know what my body is doing so I can hopefully fix it nutritionally. I also have the Lap-Band (got 3 years ago) and have lost 80 lbs because I was obese. That has made me feel much better overall but now with this I'm wondering if the lap-band surgery "activated something". It is the Band and not the gastric bypass. I didn't want anyone changing and rerouting things so I just have the adjustable band. If it needs to come out, they can do that.

Laura

Hi Laura! Welcome to the board!

I think, and I am no doc, that it does say you have evidence of Celiac (gluten-sensitive enteropathy). But it also says that it could be something else (like you suggested, Crohns, etc). Have you had blood work done? The recomendation for "serologic correlation" sounds like a recomendation for blood work (the celiac blood panel).

Be careful, because if your doctor is going to order bloodwork, you DO NOT want to go gluten-free before the blood-draw. Even a week without gluten can give a false negative blood test. On the plus side, you have had the hardest part of the "testing" than many people deciede not to have, because they are so ready to get off of the gluten.

Sounds like you need a simple blood test to confirm Celiac (OR to rule it out and lead your doc to something else, like Crohns). But the biopsy is huge, and sounds like a "YES" to me. If I were you, I would make some mental notes about your health and how you feel (if there are symptoms for you, and for some people, there are not) when you eat gluten filled foods.

Do you have to run to the bathroom? Do you get headaches? Do you notice something different? I would make sure to share this with your doc (thus the report's recomended "clinical" correlation.) Be ready to answer those questions if your doc asks them.

Hope that helps! I don't know if you WANTED to hear that you have Celiac disease, or if you are totally bummed, but if you have been sick your whole life, hopefully with this new information, you will start to feel better and healthier!

aikiducky Apprentice
aikiducky
Posted

One thing you should know is that blood tests are not reliable in patients who don't have complete villous atrophy (meaning the vili in the intestine are completely gone). In your case since it sounds like you just have the first possible signs of intestinal damage, there's a really big chance your blood work for celiac will come back negative.

There's a doctor in Holland (Chris Mulder) who wrote about it, I can't find the article right now so I put the name here in case someone else does. But basically the less damage you have, the less likely the blood tests are going to be positive. So at this point it's really hard to get any evidence of celiac for you.

The tricky thing is that if you indeed have celiac, the damage will continue to get worse, and eventually it will be bad enough to show clearly in tests. Only, at that point you might be really sick already, and have a hard time recovering.

I don't want to tell you what to do... but I thought this was something you should be aware of.

Pauliina

chrissy Collaborator
chrissy
Posted

one of my daughter's biopsies showed and increase in intraepithelia lymphocytes, also. one of the other girls had a negative biopsy, and we didn't even scope the youngest one. they all had positive TTg tests which have gone down now that they are gluten free. one of them was fed gluten when we were not away of it and her TTg levels went really high after already getting almost down to normal.

your biopsy sounds suspicious to me because of our experience. have you had a TTg test run?

LauraD Newbie
LauraD
Posted
  • Author

No I haven't had any bloodwork done yet. I see the GI doc tomorrow to discuss the path report so I'm very curious to see what he says. Thanks

one of my daughter's biopsies showed and increase in intraepithelia lymphocytes, also. one of the other girls had a negative biopsy, and we didn't even scope the youngest one. they all had positive TTg tests which have gone down now that they are gluten free. one of them was fed gluten when we were not away of it and her TTg levels went really high after already getting almost down to normal.

your biopsy sounds suspicious to me because of our experience. have you had a TTg test run?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    2. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    4. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    5. oscarbolduc
      - oscarbolduc posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Advice while waiting for testing

      Hello, I'm relatively new to this, so I'm hoping to get some advice. I went gluten-free for most of April and felt the best I've ever felt. I’ve been experiencing strange symptoms since last August, but they all disappeared when I eliminated gluten. However, to get accurate blood test results, I’m back on gluten for a month (all of May), and I’m hon...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748
    Nicole King
    Newest Member
    Nicole King
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • oscarbolduc
      Advice while waiting for testing

      By oscarbolduc · Posted

      Hello, I'm relatively new to this, so I'm hoping to get some advice. I went gluten-free for most of April and felt the best I've ever felt. I’ve been experiencing strange symptoms since last August, but they all disappeared when I eliminated gluten. However, to get accurate blood test results, I’m back on gluten for a month (all of May), and I’m honestly feeling miserable. I’ve been dealing with joint pain, bloating, diarrhea, and just overall discomfort. Does anyone have tips on how to manage these symptoms during this month? What has helped you with joint pain? 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.