Keep Digging..
Isn't modern medicine amazing! I simply love our allergist and his team. They are not afraid to try new things, look at the bloodwork numbers instead of just the physical hive reaction and just "tell you like it is".
This was our big week! On Tuesday Brian met with his *new* Rheumatologist. She seems incredible and is so good at what she does! We're so happy to finally be with someone who really does look at all the facts and leaves no stone unturned, YAY!
Brian had done so many updated X-rays and tests for this appintment. He found out at this appointment that although he for sure had some type of arthritis as a teenager and in his twenties, his arthritis currently seems to be "dormant". Huh!? Say what?!
Brian still gets aches and pains from his joints daily, sometimes its hard to do little daily tasks and still often has flare ups even though there isn't much physical swelling. She said that she could see the deterioration in his joints from the past years but that nothing really "new" has happened.
This is great news, although the pain he is experiencing is still puzzling.
On Thursday we met with Dr Cheuk. Our allergist specialist. He had all of Brian's bloodwork results and a couple of red flags flew high in them. This is what we were hoping for.. one path that could potentially lead us in a direction of real answers.
Brian tested positive for celiac and has high thyroid numbers too. You don't just get diagnosed celiac with these two potential markers but for sure they raise a red flag. It kind of makes sense though. Dr Cheuk explained that although Brian doesn't have all the symptoms for celiac desease, there are a few things to look at. He suggested that perhaps this has been going on for years and we just didn't know about it. He said likely that Brian's stomach lining is covered with antibodies which is not allowing his body to absorb the food he is eating. Brian has stuggled his whole life to gain weight.. this could (maybe!) be why. Internal inflamtion that we initally thought caused his awful reaction can also be a factor to look at. Also aching joints.. a huge red flag, especially if his current arthritis is dormant at the moment.
To put it simply, Brian's body just isn't functioning exactly right. There are a few red flags so we're going to chase those right now. Dr Cheuk wants to see what happens to Brian's bloodwork if we 100% cut out gluten for the next 6 weeks. Of course, if it is a gluten issue, its going to take longer then that to fix the problems BUT we should be able to see the bloodwork numbers trending down IF it's working.
Brian goes back April 8th to get the new bloodwork results and to see if it does in fact seem to be a gluten issue or if the numbers didn't change at all, then we are chasing the wrong thing and we will look to another path.
It's facinating how the body works. So many tiny little factors that are needed to make it function properly.
So, as overwhelming as it seems to cut of gluten immediately, I know that we will be able to do it. I mean, we've become experts with peanuts and food dyes so whats one more thing. Jk... Im overwhelemed lol.
Speaking of peanuts. Carter had his appointment yesterday too! He has now enetered level 2 of Jumangi with his peanut trial. We are so excited! We were a little nervous too. Carter did great though. They first did a skin test and checked all his vitals. All was well except the crazy itchiness! That poor guy was SO itchy!
They put level 2 of the peanut decensitization in his mouth and off we went. Carter played his switch which was a great distraction.
Luckily, it went great, there was no reaction other than the skin test that was still getting bigger and still so itchy but WHAT!? Level two and no problem! This is amazing news!!! Dr Cheuk wants to push Carter along in this trial. He said Carter's body is still taking too long and so we need to make it work harder. Yikes. If everything goes well over the next week and no reactions to his daily dose occure, we will start LEVEL 3 on April 8th. This makes me nervous. So nervous. That's not a ton of time between levels and I hope his body will handle it ok. This is where trusting your allergist comes into play. If I didn't trust Dr Cheuk, this would be a hard "no" for me. But he is an expert in what he does and is confident this will be the best for Carter. Carter will repeat his routin bloodwork in July. In August we should know if its helping his anaphalactic allergy to peanuts.
Its so nice having Brian and Carter doing these appointments together (two birds, one stone) but also as the wife to Bri and the Mom to Carter, it is A LOT to take in and divide information and numbers in my head without mixing up the details for the both of them.
So! From now until April 8th We will make sure that Carter does not get sick and can stay in level two of this trial. I will support Brian with his new gluten free journey and do my best to find the best of the best. These two guys of mine are keeping me on my toes but eventually we will figure it all out and fine tune it and hopefully feel that freedom from complications that we've been longing for.
This was our big week! On Tuesday Brian met with his *new* Rheumatologist. She seems incredible and is so good at what she does! We're so happy to finally be with someone who really does look at all the facts and leaves no stone unturned, YAY!
Brian had done so many updated X-rays and tests for this appintment. He found out at this appointment that although he for sure had some type of arthritis as a teenager and in his twenties, his arthritis currently seems to be "dormant". Huh!? Say what?!
Brian still gets aches and pains from his joints daily, sometimes its hard to do little daily tasks and still often has flare ups even though there isn't much physical swelling. She said that she could see the deterioration in his joints from the past years but that nothing really "new" has happened.
This is great news, although the pain he is experiencing is still puzzling.
On Thursday we met with Dr Cheuk. Our allergist specialist. He had all of Brian's bloodwork results and a couple of red flags flew high in them. This is what we were hoping for.. one path that could potentially lead us in a direction of real answers.
Brian tested positive for celiac and has high thyroid numbers too. You don't just get diagnosed celiac with these two potential markers but for sure they raise a red flag. It kind of makes sense though. Dr Cheuk explained that although Brian doesn't have all the symptoms for celiac desease, there are a few things to look at. He suggested that perhaps this has been going on for years and we just didn't know about it. He said likely that Brian's stomach lining is covered with antibodies which is not allowing his body to absorb the food he is eating. Brian has stuggled his whole life to gain weight.. this could (maybe!) be why. Internal inflamtion that we initally thought caused his awful reaction can also be a factor to look at. Also aching joints.. a huge red flag, especially if his current arthritis is dormant at the moment.
To put it simply, Brian's body just isn't functioning exactly right. There are a few red flags so we're going to chase those right now. Dr Cheuk wants to see what happens to Brian's bloodwork if we 100% cut out gluten for the next 6 weeks. Of course, if it is a gluten issue, its going to take longer then that to fix the problems BUT we should be able to see the bloodwork numbers trending down IF it's working.
Brian goes back April 8th to get the new bloodwork results and to see if it does in fact seem to be a gluten issue or if the numbers didn't change at all, then we are chasing the wrong thing and we will look to another path.
It's facinating how the body works. So many tiny little factors that are needed to make it function properly.
So, as overwhelming as it seems to cut of gluten immediately, I know that we will be able to do it. I mean, we've become experts with peanuts and food dyes so whats one more thing. Jk... Im overwhelemed lol.
Speaking of peanuts. Carter had his appointment yesterday too! He has now enetered level 2 of Jumangi with his peanut trial. We are so excited! We were a little nervous too. Carter did great though. They first did a skin test and checked all his vitals. All was well except the crazy itchiness! That poor guy was SO itchy!
Its so nice having Brian and Carter doing these appointments together (two birds, one stone) but also as the wife to Bri and the Mom to Carter, it is A LOT to take in and divide information and numbers in my head without mixing up the details for the both of them.
So! From now until April 8th We will make sure that Carter does not get sick and can stay in level two of this trial. I will support Brian with his new gluten free journey and do my best to find the best of the best. These two guys of mine are keeping me on my toes but eventually we will figure it all out and fine tune it and hopefully feel that freedom from complications that we've been longing for.