Swimming Alone In The Gluten-Free Sea

[HumanDecency]

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. 

[shadowicewolf]

  On 6/26/2013 at 4:56 PM, HumanDecency said:

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]

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]

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]

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]

  On 6/27/2013 at 1:58 AM, HumanDecency said:

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]

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.

[Kassia]

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.