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 Am Going Crazy!

Chelle15

Recommended Posts

Chelle15 Apprentice
Chelle15
Posted

My emotions are all over the place! Because I have had diarrhea for almost 2 months after having constipation for years the doctor did blood tests for Celiac and I was told I have "two positive markers" and need to get a biopsy, so I have a consult a week from today. I feel like crap and I don't know if it is all in my head. I have struggled with depression, but right now I am so emotional and all over the place. I feel like I could cry. I am so wrapped up in myself and I need to just forget about it until I get the final diagnosis. Does two positive markers mean I probably have it? Any input on how to cope while waiting to get the final testing? I feel like I am ill, mentally and physically.

Thanks for all of your support so far and any further info you can give me on how to cope. Thank you, thank you, thank you! I am so glad I found these message boards!

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

Celiac.com Sponsor (A8-M):


eleep Enthusiast
eleep
Posted

Your symptoms and feelings do sound very much like Celiac -- I had the crazy mood swings as well -- and the two positive markers are definitely more indication than I got at that stage in the diagnosis (I had to get genetic testing for total confirmation). It helped me a lot to focus on the fact that I would eventually feel better, that my moods were more about my body than anything going on in my life and that they would subside once I went gluten-free and got through the process of withdrawing from gluten. One of the distractions I used even before I took the step of eliminating it (still waiting to see if I was going to have an endoscopy) was to read up as much as I could on this board and to start thinking about my strategy for dealing with this stuff once I eliminated it -- looked at what my personal care products and stuff were that contained gluten, put together a collection of recipes and such that I would use, stocked up on Immodium (does help the moods too -- has to do with blocking endorphin receptors -- there's something about it on the board).

Other people may have some more concrete suggestions about managing the symptoms.

Ursa Major Collaborator
Ursa Major
Posted

If you use Immodium, be aware that the liquid Immodium has gluten in it. If you have two positive markers, you have celiac disease, even if the scope would be negative. Because the endoscopy often misses the damage.

ravenwoodglass Mentor
ravenwoodglass
Posted

Your not going crazy you are celiac. Welcome to the boards. After you have your endo please become gluten free even if the results are negative. Your depression should lift after you have been gluten-free for a while. Make sure that you eliminate gluten completely from your world after the tests.

mle-ii Explorer
mle-ii
Posted
If you use Immodium, be aware that the liquid Immodium has gluten in it. If you have two positive markers, you have celiac disease, even if the scope would be negative. Because the endoscopy often misses the damage.

Ugg! Really? You mean I've been glutening myself after being glutened? No wonder I feel like crap even when taking it.

Is there something similar that works quickly and doesn't contain gluten?

Chelle15 Apprentice
Chelle15
Posted
  • Author

You cannot imagine the help and support you have given me. No one wants to hear me talk about it anymore, so it is nice to come here and be able to talk about it and get my questions answered. Thank you for taking the time to help me feel a little better. :D So glad to have found this board.

StrongerToday Enthusiast
StrongerToday
Posted
Ugg! Really? You mean I've been glutening myself after being glutened? No wonder I feel like crap even when taking it.

Is there something similar that works quickly and doesn't contain gluten?

Pepto and regular Immodium - but NOT soft chews!! - are fine.

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

Celiac.com Sponsor (A8-M):


mle-ii Explorer
mle-ii
Posted
Pepto and regular Immodium - but NOT soft chews!! - are fine.

I'm really confused now. What exactly is fine and what is not? Sorry, but I'm not going to take any more chances and get sick. Regular immodium to me is the liquid.

Is there a list?

eleep Enthusiast
eleep
Posted

You want the Immodium caplets -- I don't know what else is gluten-free. Also, I don't know whether the CVS generic version of Immodium is gluten-free as well, so you probably want the brand name (or at least to confirm).

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. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
    3. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    5. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.