I just learned a lot and I think you're onto something. We need more voices at the table. Alas, that has been the biggest failure.
We're all unique and have different immune systems. I've always thought that treatment of any kind requires acknowledging that as a fundamental principle.
Our situation is personal as well; our son has Celiac…
I just learned a lot and I think you're onto something. We need more voices at the table. Alas, that has been the biggest failure.
We're all unique and have different immune systems. I've always thought that treatment of any kind requires acknowledging that as a fundamental principle.
Our situation is personal as well; our son has Celiacs Disease really bad. Our experience with doctors was awful. In the end we figured it out ourselves. And came up with the best "treatment" and "practices" for him as an individual.
I can't imagine what his health would be like now at 12, had we not taken the initiative.
It occurred to me that my story might sound too fantastic. I'm not trolling you. I really do have boy-girl twins. My son really does have CD.
FYI, I reached out to the following organization (which was started by a woman who lives near me) to find out it there were any updates on the study I mentioned. My son has no interest in any medical interventions and does not want to repeat the biopsy. I used to take him to the GI doctor who diagnosed him to have his bloodwork checked, but he no longer wants to do that. He is, however, very careful. Now that he has been on a GF diet for many years, he has a violent (and I mean violent) reaction to be glutened. He's very careful now.
This is my son, James. He's getting his DMA in piano performance at Rice.
My son also has Celiac, so I understand where you're coming from. We were so focused on our daughter's health. Once we got her settled, his problems started. It was disorienting. He was my healthy child. He didn't have classic symptoms. He had reflux and growth suppression. It took too long to get his doctor to pay attention. He was finally diagnosed a few weeks before he left for college 700 miles from home.
He had a rough first year, but we got him into an apartment his sophomore year. He's in graduate school now and has become quite the chef. He and my husband have the DQ2.5 genes. I'm sure my husband has CD as well, but his anti-tTG was negative. I miss the good old days when we could eat without worry or hassle, but we've adjusted.
It usually takes years for people to be diagnosed with autoimmune conditions and there's a lot of ignorance in the medical community and the general public. FYI, Harvard did a retrospective analysis a few years ago and found that about 20% of celiac patients do not go into remission on a gluten free diet. Last I heard, they were conducting a prospective study. After years of doctors reprimanding their patients for. "cheating", someone decided to look.
I'm sorry that it took so long to get help for your son.
I just learned a lot and I think you're onto something. We need more voices at the table. Alas, that has been the biggest failure.
We're all unique and have different immune systems. I've always thought that treatment of any kind requires acknowledging that as a fundamental principle.
Our situation is personal as well; our son has Celiacs Disease really bad. Our experience with doctors was awful. In the end we figured it out ourselves. And came up with the best "treatment" and "practices" for him as an individual.
I can't imagine what his health would be like now at 12, had we not taken the initiative.
It occurred to me that my story might sound too fantastic. I'm not trolling you. I really do have boy-girl twins. My son really does have CD.
FYI, I reached out to the following organization (which was started by a woman who lives near me) to find out it there were any updates on the study I mentioned. My son has no interest in any medical interventions and does not want to repeat the biopsy. I used to take him to the GI doctor who diagnosed him to have his bloodwork checked, but he no longer wants to do that. He is, however, very careful. Now that he has been on a GF diet for many years, he has a violent (and I mean violent) reaction to be glutened. He's very careful now.
This is my son, James. He's getting his DMA in piano performance at Rice.
https://www.youtube.com/watch?v=sJ8WBZmrJv4
I know you're not trolling me!
I read every comment you make and we crossover a few stacks. You're the real deal.
I'll respond a little later. At lunch with my twins!...lol
I'm glad. I read your comments as well.
Have fun! :)
We're off to see the Christmas lights at Longwood Gardens. Beautiful place if you're ever in the area.
Sorry. Forgot to link this.
https://www.beyondceliac.org
My son also has Celiac, so I understand where you're coming from. We were so focused on our daughter's health. Once we got her settled, his problems started. It was disorienting. He was my healthy child. He didn't have classic symptoms. He had reflux and growth suppression. It took too long to get his doctor to pay attention. He was finally diagnosed a few weeks before he left for college 700 miles from home.
He had a rough first year, but we got him into an apartment his sophomore year. He's in graduate school now and has become quite the chef. He and my husband have the DQ2.5 genes. I'm sure my husband has CD as well, but his anti-tTG was negative. I miss the good old days when we could eat without worry or hassle, but we've adjusted.
It usually takes years for people to be diagnosed with autoimmune conditions and there's a lot of ignorance in the medical community and the general public. FYI, Harvard did a retrospective analysis a few years ago and found that about 20% of celiac patients do not go into remission on a gluten free diet. Last I heard, they were conducting a prospective study. After years of doctors reprimanding their patients for. "cheating", someone decided to look.
I'm sorry that it took so long to get help for your son.