Good News But Frustrating

Posted by Lisa Stevens on

Do you ever get good news, you know it is good news, but it just doesn't feel like good news?

My example is this...I got a call from the doctor a few days ago, after having some tests done. I do not in fact have a disease they suspected I had. So YAY, good news! But that leaves me without answers and that can be frustrating. At least with a diagnoses I can see the path ahead, I know what to google, how to research. But with more unanswered questions...where do I go from here? 

Over the last few years I have been having digestive issues. We have talked about it before, on our Facebook lives, I do not remember if I blogged about it or not. hahahaha (Two weeks ago, we posted a blog I had written when it had began...this is my update.) 

The symptoms first presented as acid reflux (or GERD) and then as gallbladder. I was put on medication for the reflux, and an ultrasound and bloodwork ruled out gallbladder.

I honestly do not remember the exact order of testing and what steps I took, but I know at one point I went gluten free and my episodes were drastically reduced, while overall feeling better, not perfect or great, but better than I had been feeling. 

Somewhere along the way celiac was suggested but I was already gluten free and you cannot get the tests for celiac without the presence of gluten in your diet. 

So we did tests without being on gluten, until I was ready to give up 6-8 weeks of life trying. 

I was not willing to do this, then my oldest daughter was diagnosed with celiac. So the specialist proposed that it might be worth trying a gluten trial and see what happens. 

I decided to do this and it was close to the worst 7 weeks of my life. I was expecting to live in the washroom and/or bed for the weeks....but while it was a blessing that did not happen...what did happen was worse. There were three main symptoms that presented themselves. 1) Fatigue - not tired, beyond tired, whole body, down to the bones tired. 2) Joint Pain - Every single joint and muscle in my body hurt, all the time. Right from the bottom of my feet to the top of my head (although the headache may have more to do with the next symptom) even my hands/fingers hurt, I had such a hard time doing anything, walking was painful, writing or trying to hold anything with my hands hurt, sleeping was almost non-existent, body was just in pain all the time. 3) This one felt very unexpected, but now I know it is quite common. My mental state went way down hill, I have had lows in my life, but this was the lowest. I have heard people talk about rock bottom before and I thought I understood....I had not, but now I do. I was crying all the time. No motivation to do anything, to go anywhere, to see anyone, anxiety was through the was bad. 

Then I had the test, the doctor told me to go back off gluten, he said the results would likely show celiac. 

I began to feel better within days, the joint pain began to subside, the tiredness within a week. The mental symptoms did not...but that is really a whole other blog, that I may one day write and share. 

I was preparing for the diagnosis, at this point assuming it was forthcoming. So when he called and said that there was no evidence of damage done to my insides....that celiac was not the cause, I will say I was in shock. I knew this was good news, but it left me so confused. He did say lots of people have issues with gluten, not only celiacs and to stay off. He also prescribed me medication that helps people with IBS and told me try it and see if it helps. 

I left the conversation in tears. Unsure how I should feel or react, so confused. 

Now that it has been a few days, time to really process it all. I do know that it is indeed good news. After searching online I also know there are many people who have had the same story as mine. All the symptoms are there but no official diagnoses of anything. 

The best I can come up with is Non-Celiac Gluten Sensitivity (NCGS), IBS and Acid Reflux (GERD). Which could explain all of my symptoms. I also have issues with dairy, caffeine and have an allergy to shellfish. So while the non-diagnoses of celiac did change one thing (I do not need to be concerned that getting gluten will damage my insides), it still harms my body and mind. I will continue to be careful of the foods I consume for the rest of my life. But I am thankful that it will not have to be as particular as if I had celiac. 

In the end, if you invite me to your place for a meal or out to eat, I will still likely bring my own food or want to help choose the restaurant....because none of those symptoms are anything I want to experience if I can avoid it. 


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