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Symptoms Getting Worse. Ideas?

Jonesy3449

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Jonesy3449 Newbie
Jonesy3449
Posted

I was diagnosed with celiac around 9 months ago with a blood test and endoscopy. I have been eating gluten free since then and had a few months of feeling a little better but over the last couple months my gut issues have returned and gotten worse. I eliminated all dairy products and I'm out of ideas. Anybody else in the same boat?

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mynxr Rookie
mynxr
Posted

I was diagnosed with celiac around 9 months ago with a blood test and endoscopy. I have been eating gluten free since then and had a few months of feeling a little better but over the last couple months my gut issues have returned and gotten worse. I eliminated all dairy products and I'm out of ideas. Anybody else in the same boat?

 

Are you taking any medications?  Doing any cooking with natural flavors ie vanilla, eating pickles on a regular basis, etc.?  I can only speak from my experience but I discovered that my meds contained gluten, natural flavors can contain gluten.  If natural vanilla flavoring is made from vodka distilled from wheat, it will make me react.  Dextrin makes me react.  You may want to look a little closer at the ingredients and check www.glutenfreemeds.com to make sure that your medications, Rx or OTC are gluten free as well.  It was a real eye opener to me.

sunny2012 Rookie
sunny2012
Posted

Is your house gluten free? My family had to stop having any gluten in the house while I healed. As we start getting less gluten, it can actually make us much sicker than when we were being constantly bombarded with it.

 

 

Other than that - we can still have all the other normal issues. My gallbladder was necrotic - actually put me in hospital several times with "food poisoning". Had the social workers come in and "explain" how to keep my food "safe". I finally had to meet with a surgeon and demand that he look at me and TALK to me not the tests results. They could not believe that I had survived with a dead organ or that the tests showed it working "within normal limits" (I just love that phrase - like I am a Star Trek machine instead of a living breathing human being.)

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    • FannyRD
      Gluten free phosphate binders for dialysis patients

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    • Scott Adams
      Gluten free phosphate binders for dialysis patients

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
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