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

Swimming Alone In The Gluten-Free Sea


HumanDecency

Recommended Posts

HumanDecency Contributor

I've been gluten free now for 2 months a couple weeks in change. I've gone through various symptoms and withdrawal. My doctors, while trying to be helpful, really do not do much to help. I was introduced to a nutritionist who basically told me "not to eat gluten". Yet laughed off when I told her I was also sensitive to corn. It seems like there is so much misinformation out there.

 

So I'm sitting here as a diagnosed celiac with probable acid reflux and really uncertain how to to progress with either. I'm on a gluten free and low acid diet. I take lanoprazole and a daily vitamin... but it is still a battle. I'm not sure I understand what recovery feels like.

 

This week I developed "a stronger pulse" or maybe I just realized it. I don't know. When I lie down I totally feel my heart beating loudly. It's worrisome. A few weeks ago I had a stress test at the ER to check my heart. It came out fine. Now it feels anxious in the center of my chest. I don't know what is me over-reacting and I don't know what is an actual symptom of celiac. 

 

I don't know that I really have a question here. I'm probably just looking for sympathy or some kind of acknowledgement that things are going to get better and will eventually be okay. 

 

Maybe it's depression? does anyone else feel this way? I'm sure. 


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

I've been gluten free now for 2 months a couple weeks in change. I've gone through various symptoms and withdrawal. My doctors, while trying to be helpful, really do not do much to help. I was introduced to a nutritionist who basically told me "not to eat gluten". Yet laughed off when I told her I was also sensitive to corn. It seems like there is so much misinformation out there.

 

So I'm sitting here as a diagnosed celiac with probable acid reflux and really uncertain how to to progress with either. I'm on a gluten free and low acid diet. I take lanoprazole and a daily vitamin... but it is still a battle. I'm not sure I understand what recovery feels like.

 

This week I developed "a stronger pulse" or maybe I just realized it. I don't know. When I lie down I totally feel my heart beating loudly. It's worrisome. A few weeks ago I had a stress test at the ER to check my heart. It came out fine. Now it feels anxious in the center of my chest. I don't know what is me over-reacting and I don't know what is an actual symptom of celiac. 

 

I don't know that I really have a question here. I'm probably just looking for sympathy or some kind of acknowledgement that things are going to get better and will eventually be okay. 

 

Maybe it's depression? does anyone else feel this way? I'm sure. 

Could it be a side effect from your medication?

HumanDecency Contributor

Hard to say. My doctor says it isn't a side effect. But Internet articles seem to disagree. He asked me to go buy a lower does over the counter version and try that out for a while to see how I feel. I'm currently working on that.

GottaSki Mentor

Welcome HD!!!

 

You have come to the right place....unfortunately Celiac Disease has many different symptoms and each of us responds differently to the removal of gluten.  It takes time and patience which are both hard to come by when we are already run down prior to diagnosis.

 

One of my kids main symptoms was GERD/Reflux -- it is our experience that this is caused from too little stomach acid contrary to popular medical advice that we are making too much.  You may want to try to lay off the GERD meds and/or try the following:

 

Take Digestive Enzymes before meals and Betaine HCl about an hour after your meal.  A few other folks that are Celiac/GERD have given this a shot around here and it has helped.

 

Regardless...welcome...hang out...ask questions and make sure you read the "Newbie 101" thread as it contains invaluable info.

 

Take care :)

HumanDecency Contributor

Lisa,

Thanks for your respone. I have been browsing around for a while but really to new to add anything of substance. I've asked my doctor about your suggestion. I would prefer it over the PPIs. I didn't have "these" side effects before the meds. It doesn't seem right to exchange one chest pain for another.

I'll keep learning and trying to chug along... but it's just so terribly overwhelming.

Your new cyber friend,

Jesse

GottaSki Mentor

Lisa,

Thanks for your respone. I have been browsing around for a while but really to new to add anything of substance. I've asked my doctor about your suggestion. I would prefer it over the PPIs. I didn't have "these" side effects before the meds. It doesn't seem right to exchange one chest pain for another.

I'll keep learning and trying to chug along... but it's just so terribly overwhelming.

Your new cyber friend,

Jesse

 

Nice to meet you Jesse...

 

totally get the chugging along...it does get better...keep looking for answers :)

 

edited to add...love your puppy photo!

HumanDecency Contributor

Thanks. The puppy is on a Gluten Free diet as well. :)
 

I buy him the good expensive food and treats. I was worried he would have problems with it but so far so good. He actually is excited to eat most days now.


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



Celiac.com Sponsor (A8-M):



Kassia Newbie

When I started on this journey, it was because I had intense acid reflux that made me useless for an entire half hour. No medications worked, and I never had attacks based on the so-called normal triggers. Instead, mine hit around 9:30 in the morning -- so convenient since I was at my office and people were looking to me for information. About a month, month and half, after eliminating all gluten from my diet, I realized the acid reflux attacks had completely stopped. Since then, I've had some attacks, but nothing like what I suffered.

 

This whole recovery thing *does* take time, and it's a different amount of time for each of us. As one thing gets better, we become more aware of other things (and how new items like medications impact us). The trick is to pay attention to your body -- and if you don't think you're getting good support from your doctor or nutritionist (who sounds like a bad fit for you), find someone who can help guide you through the process.

 

And remember that you're not alone.

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. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

      Supplements for those Diagnosed with Celiac Disease

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

      Insomnia help

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

    • Total Members
      133,348
    • Most Online (within 30 mins)
      7,748

    jimiiiii
    Newest Member
    jimiiiii
    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

    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • 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 
×
×
  • 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.