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

I Might Be An Idiot, But I Am Desperate...


Dee777

Recommended Posts

IrishHeart Veteran

I will find out for you Irish! A bit of a setback today, just a bit more D than the past few days. I was wondering do you think it was because I was a bit late in taking my probiotic? And do you know how long before I can expect the D to "bulk up"? Sorry to sound so descriptive but its still somewhat watery :-) Oh my I so never expected to ever have so many poop conversations lol

:lol: talking about poop doesn't bother me anymore....it is what it is... B) I'm cool with it....LOL!!

Well, I am interested in what type of anemia they are treating you for , but honey..... do not find out for ME, find out for YOU! ;) YOU need to know what the heck is going in your body. You need to know what anemia was created by the celiac..... so you can monitor your progress and know what needs to be done in the future for good health. It's overwhelming right now because you feel like crap (yup, I said it!) and so, I am helping you because I was in your shoes just a short time ago and had to figure it all out myself. I read a LOT and that's how I came to be on here!

Dee, One of the many (thousands) of things I have learned during my 3 year odyssey with the dozens of "health professionals" I met is.....

ASK questions.

Get COPIES of your tests results (you have a right to them and your medical files)

DO NOT leave an office until you are SATISFIED that all of your questions have been answered and concerns have been met.

I was so sick and out of it, I blindly followed everyone's "advice" and it set me back in ways you cannot imagine. I was misdiagnosed so many times and took drugs that made things WORSE! Someday, I am going to write a book about it all.

Secondly, Probiotics do not work quickly. They work cumulatively and in time. They do not work on the system like fiber or anti-diarrheals. Plus, You can't take them "too late" so do not worry about that. Just take them daily, on an empty stomach (which shouldn't be hard given your fast flush response :unsure: ).... They replenish the gut with good bacteria, balancing out the bad ones and reduce the gut inflammation, which is what celiacs have BIG TIME! In TIME, the gut walls heal and absorption will return and food will be digested properly and the big D will stop. I promise.

To "bulk you up", you need FIBER and water. Water bulks up the fiber and makes "good stools"...You need to EAT. The trick is which fiber-filled foods can you eat? Apple? Rice? Starchy vegetables? sweet potatoes? baked potatoes? "Google" Foods high in fiber and look at the list of foods. Gradually add them into your diet. I personally used psyllium husk to bulk up but you HAVE to drink a LOT of water for it to bind and make good stools.

Oh dear Gawd :lol: ...I cannot believe I am saying all this. :blink: I was an English prof. (LOL) and now, I am lecturing about poop...LOL LOL LOL

Be patient, Dee. As others told me, this is a rocky up- and- down road to healing BUT it happens. Water, fiber, probiotics and take your supplements. Find out what is in those intravenous bags--I am guessing either B-12 or iron. If it is iron, I am stunned you are not backed-up as that causes, hard dark stools......

okay, let me know!!!


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



Celiac.com Sponsor (A8-M):



  • Replies 52
  • Created
  • Last Reply
Dee777 Rookie

:lol: talking about poop doesn't bother me anymore....it is what it is... B) I'm cool with it....LOL!!

Well, I am interested in what type of anemia they are treating you for , but honey..... do not find out for ME, find out for YOU! ;) YOU need to know what the heck is going in your body. You need to know what anemia was created by the celiac..... so you can monitor your progress and know what needs to be done in the future for good health. It's overwhelming right now because you feel like crap (yup, I said it!) and so, I am helping you because I was in your shoes just a short time ago and had to figure it all out myself. I read a LOT and that's how I came to be on here!

Dee, One of the many (thousands) of things I have learned during my 3 year odyssey with the dozens of "health professionals" I met is.....

ASK questions.

Get COPIES of your tests results (you have a right to them and your medical files)

DO NOT leave an office until you are SATISFIED that all of your questions have been answered and concerns have been met.

I was so sick and out of it, I blindly followed everyone's "advice" and it set me back in ways you cannot imagine. I was misdiagnosed so many times and took drugs that made things WORSE! Someday, I am going to write a book about it all.

Secondly, Probiotics do not work quickly. They work cumulatively and in time. They do not work on the system like fiber or anti-diarrheals. Plus, You can't take them "too late" so do not worry about that. Just take them daily, on an empty stomach (which shouldn't be hard given your fast flush response :unsure: ).... They replenish the gut with good bacteria, balancing out the bad ones and reduce the gut inflammation, which is what celiacs have BIG TIME! In TIME, the gut walls heal and absorption will return and food will be digested properly and the big D will stop. I promise.

To "bulk you up", you need FIBER and water. Water bulks up the fiber and makes "good stools"...You need to EAT. The trick is which fiber-filled foods can you eat? Apple? Rice? Starchy vegetables? sweet potatoes? baked potatoes? "Google" Foods high in fiber and look at the list of foods. Gradually add them into your diet. I personally used psyllium husk to bulk up but you HAVE to drink a LOT of water for it to bind and make good stools.

Oh dear Gawd :lol: ...I cannot believe I am saying all this. :blink: I was an English prof. (LOL) and now, I am lecturing about poop...LOL LOL LOL

Be patient, Dee. As others told me, this is a rocky up- and- down road to healing BUT it happens. Water, fiber, probiotics and take your supplements. Find out what is in those intravenous bags--I am guessing either B-12 or iron. If it is iron, I am stunned you are not backed-up as that causes, hard dark stools......

okay, let me know!!!

Good day to you, Irish.

The goods in the bags are potassium. I received an injection of B-12 apparently, I don't remember this but usually when I have been prone on the hospital bed I tend to sleep and haven't really paid a whole lot of attention to what they have been doing. I asked the nurse about the iron issue and she looked on my file and said that the levels are borderline low and not low enough apparently to warrant intravenous intervention. So, potassium because those levels are apparently low. BUT, I am feeling ever so much better. Eating three small meals a day and a few snacks in between, and for the most part keeping that in. I believe the probiotics are what are making all the difference. I ran out of them yesterday as the pharmacy couldn't get them in as soon as I needed them so was without for 24 hours. I managed to get some today from another place (same brand) and things really preked up considerably from yesterday. Who would have thought a few hundred billion bacteria would make such a difference?

My husband tells me we must have a contingency plan in place in case this happens again, bless his heart. I am so lucky he is such a supportive man. I am so lucky to have such supportive friends in here to help me through these tough times, I give you most of the credit for my recovery thus far. I seriously doubt I would be feeling this well if it weren't for your knowledge and advice, so thank you SO much!

Irish, you are an English prof with a degree in gastroenterology lol

Dee

IrishHeart Veteran

Good day to you, Irish.

The goods in the bags are potassium. I received an injection of B-12 apparently, I don't remember this but usually when I have been prone on the hospital bed I tend to sleep and haven't really paid a whole lot of attention to what they have been doing. I asked the nurse about the iron issue and she looked on my file and said that the levels are borderline low and not low enough apparently to warrant intravenous intervention. So, potassium because those levels are apparently low. BUT, I am feeling ever so much better. Eating three small meals a day and a few snacks in between, and for the most part keeping that in. I believe the probiotics are what are making all the difference. I ran out of them yesterday as the pharmacy couldn't get them in as soon as I needed them so was without for 24 hours. I managed to get some today from another place (same brand) and things really preked up considerably from yesterday. Who would have thought a few hundred billion bacteria would make such a difference?

My husband tells me we must have a contingency plan in place in case this happens again, bless his heart. I am so lucky he is such a supportive man. I am so lucky to have such supportive friends in here to help me through these tough times, I give you most of the credit for my recovery thus far. I seriously doubt I would be feeling this well if it weren't for your knowledge and advice, so thank you SO much!

Irish, you are an English prof with a degree in gastroenterology lol

Dee

Oh DEE!!

I am so happy you are feeling better--gimme a cyber-space high five, girl!! yeehaw!

I have the most amazing husband, too. :) I simply would have gone stark raving mad had it not been for his unconditional love and support these past 3 horrifying years. He even went gluten-free with me and bakes our gluten-free bread and knows how to read labels!! (I know, he's a doll!)

Potassium--aha..one of the things affected by celiac disease. Your doctor is on top of things!

Doctors do not suggest probiotics, which is too bad because they are ESSENTIAL to gut repair and reducing inflammation. Good bacteria is crowded out by the bad in leaky guts and that's NOT good. I would not have known it myself had I not had the stool testing. Yuck and oh, the things we do to get well :blink:

Here's a great article (written in fact, by the doctor who started this website!) that explains why we need probiotics to heal our leaky guts. Very interesting!!!!

Open Original Shared Link

I am so happy for you!! :D Keep me posted on your progress!

Archived

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

  • 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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.