Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

My Mother Case

eazyeazy

Recommended Posts

eazyeazy Rookie
eazyeazy
Posted

Hello,

As I have already written in my previous posts my gastroscopy returned 2nd Marsh gut degradation - while the blood work for celiac antibodies was negative. My mother (~55 years old) has pretty much the same symptoms as I have like anxiety, depression, fatigue, stomach pain etc. However my mother case is much more severe since for a couple of past years she was having serious anemia (low iron, bad blood results) and other things. Recently lab tests showed that she has blood in her stool. Doctor send her to hospital for additional tests here are the results:

1) gastroscopy: 3B Marsh gut degradation

2) colonoscopy: severe inflammation of large intestine

3) blood work for celiac was negative

Is this all caused by celiac disease? How I can help my mother?

I have been on gluten free diet for almost 2 months now and I can't say I see any difference. I actually really envy the people who know at the beginning that diet is helping them. Maybe there are other potential causes here or I'm missing something?

Thanks for the hints!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


domesticactivist Collaborator
domesticactivist
Posted

It sounds like there is something going on besides celiac disease, to me. Did they run a celiac panel to see if that is part of her problem?

That said, I don't see how gluten could *help* the situation.

You say being gluten-free has not caused a difference for you - I wonder if you are truly gluten-free? I have a guide on my blog for being 100% gluten-free. Just being "gluten-lite" doesn't cut it.

It might be that something like the GAPS diet could help. It reduces inflammation in the body and helps restore a healthy gut flora balance. Our family noticed that just being gluten-free was not enough for us. We have found much more healing with the GAPS diet. (Story on my website, linked from my profile.)

I also have a resources for learning more about GAPS. The links are in the original post, from the blog linked from my profile, since they are not allowed here.

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

There may be other things going on also but with the Marsh 3 that does mean she is celiac even though the blood tests were negative. The inflammation could be caused by the celiac or something else in addition to the celiac could be going on but being gluten free is not going to effect the outcome of testing for anything other than celiac.

Both of you need to be very strict with the diet and take precautions to prevent CC. It may also be helpful to drop dairy for a bit until you are feeling better. It can take a while to heal and going with whole unprocessed foods at the start will help speed the healing along. Do make sure that you have taken all the steps needed to keep you safe in your own kitchen and if possible avoid eating out until you are healed a bit and then do make sure that the places you do eat out have a gluten free menu.

Link to comment
Share on other sites
eazyeazy Rookie
eazyeazy
  • Author
Posted

Hey,

Thanks for the hints. I'm not really sure if this inflammation of large intestine can be related to celiac anyhow?

This CC stuff and cleaning the kitchen looks really hard for me - especially if I can't really see the gluten particles with my own eyes. I need to figure something out in this matter :(

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

Hey,

Thanks for the hints. I'm not really sure if this inflammation of large intestine can be related to celiac anyhow?

This CC stuff and cleaning the kitchen looks really hard for me - especially if I can't really see the gluten particles with my own eyes. I need to figure something out in this matter :(

If it is related to the celiac the inflammation will resolve after a bit on the diet. If it doesn't the diet will not effect testing for anything other than celiac. With the biopsy results the diet is needed. It does seem hard at first but with the kitchen the big things are getting a new toaster, replacing scratched nonstick cookware, strainers and wooden cutting boards and utensils. If your household is going to be mixed simply wipe down surfaces and prepare gluten-free foods on a cutting board or a plate for sandwiches etc. You also need new condiments, nut butters etc that are only for the use of the gluten-free folks in the house.

You will get the hang of it but it does seem like a lot at first. If you have any more questions do feel free to ask them and read as much here as you can.

Link to comment
Share on other sites

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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...