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 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,818
    • Most Online (within 30 mins)
      7,748

    Richard delsanto
    Newest Member
    Richard delsanto
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Be sure to be eating gluten daily until all of your celiac disease tests are completed (at least 2 slices worth of wheat bread per day for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy).
    • knitty kitty
      @maylynn, No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide).  My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies.  I studied nutrition before earning a degree in Microbiology because I wanted to know what vitamins were doing inside the body.  My doctors just prescribed pharmaceuticals to cover the symptoms of poor health due to malabsorption of nutrients. We need more thiamine when we're physically ill, physically active, emotionally stressed and work outside in hot weather.  Thiamine works in concert with the other B vitamins, so all should be supplemented together.  Vitamin D needs to be activated by thiamine.  Vitamin D helps regulate the immune system.   Don't take Thiamine Mononitrate because it is not bioavailable.  The body has difficulty absorbing and utilizing it.   Do keep us posted on your progress!
    • maylynn
      @knitty kitty Did they give you medication for the Thiamine? I have never heard of that and have never related to symptoms more. My energy is always SO low. Zero drive to get anything done or work out. I used to love being on the go and being active. I am heading to the doctor next week so I will make sure to bring this up! Thank you so much! 
    • maylynn
      @trents I have had another scope done since being diagnosed. The only thing they told me at that time was my body seems to be healing very well and to continue what I was doing. At that time, I had only been diagnosed 2 years so it may be a possibility that it was healing then but not now maybe. I think you're right that it's about time one was done! I will be bringing that up to my doctor at my apt. next week. Thank you for the suggestions with food. I have tried diary so far. Seems to not be the issue (luckily!). Will have to try the others!
    • maylynn
      Thank you so much for the advice, Scott. I am going back to the doctors next week to get more blood work done. The only thing they recommended me to take so far has been two shots of liquid iron in the morning to keep my iron levels high. What supplements or vitamins have worked for you? I never physically feel my celiac symptoms, unless I got cross contamination which I feel has only happened a handful of times in the last four years. When I eat it feels so different than my celiac. Which makes me wonder if it is another food like you suggested. Has anyone ever had issues with meat? I feel like I can snack and snack until it is a full meal, usually including meat. Could that be an allergy or just my gut not digesting well from the celiac? These are all things I am wanting to bring up to my doctor next week but hearing from other people with the same disease beforehand makes me feel less crazy about all of my stomach issues! Thank you again! I will check out the article. 
×
×
  • Create New...