Appreciate you, Tayler! So true. Soon after diagnosis, I went through a bad period of burn out. Doing much better now, but I’ve learned to plan restaurant experiences only as I feel up to it. And luckily my friends let me choose where I feel comfortable eating.
I was diagnosed by a Gastroenterologist 5 years ago. I have had 2 PCPs that were really helpful and supportive, and were happy how the diagnose helped me. I got a new PCP and when speaking about a complete different issue and how the Celiac effects it, he blurts out "You don't have Celiac Disease". I said it is listed in my record, and he said no, it was not. I said I had printed out the record, and saw the diagnosis there, and he said "Yes, it's there, but the other Doctor was wrong, you don't have Celiac Disease". I was so shocked and don't know what to do. I was soooo sick, and really don't want to go back to that, but I also don't want to be called a fraud. It's so disheartening. And yes, it does make you feel burned out.
@@celiacnutrition Yes I did. He said because my follow up blood test 4 years after the diagnosis was normal. He said it was impossible not get some gluten, so your check up tests will never be normal. I just made an appointment with the Gastro who diagnosed me, so we will see what she says. Since I had one experience where I bought beans online, and they said Certified Gluten free, and then I got sick over a couple of months, so I checked the actual bag, and it not only did not say certified, it said "Processed on equipment that also processes wheat". I got better again after not eating them.I became VERY cautious and strict after that. I have not been sick since, and I never eat out. He said if I started eating gluten again, and got sick, he would not give me any medication for the symptoms.
@@shakeyj4523 I have been diagnosed for a little over a year, and my blood work numbers went from 250+ to 1.6. The lab notated on my latest report “no indication of celiac disease“, but I was diagnosed with an endoscopy and biopsy last year, so I know I had and still have celiac disease. The low number is just an indication that I am being vigilant with my GF diet. Maybe your numbers were very low, too, and the new PCP is not that familiar?
I am 89. Found out I am Celiac 2 yrs ago. No specialist here. Ins does not pay for tests or care. Family does not acknowledge possibly they are also Celiac. I am on Medicare and partial Medicaid. I get where eating is just a chore. Food is bland as l am also sensitive to salicylates. Tonight I just don't feel like eating at all.
I don't know if it will help, but you can deduct the costs of Celiac Disease on Taxes. The food is expensive and so are any supplements you may have been told to take. Since supplements are considered basically food, you can deduct them. The downside is that you have to itemize, which means you have to keep track of what you eat that is specifically gluten free. Check with your senior center too. Some have meal plans that also can help. Some Senior Centers have people who can give tax advice too. You might be able to add the food to the medical deduction. Good luck!!
Appreciate you, Tayler! So true. Soon after diagnosis, I went through a bad period of burn out. Doing much better now, but I’ve learned to plan restaurant experiences only as I feel up to it. And luckily my friends let me choose where I feel comfortable eating.
I was diagnosed by a Gastroenterologist 5 years ago. I have had 2 PCPs that were really helpful and supportive, and were happy how the diagnose helped me. I got a new PCP and when speaking about a complete different issue and how the Celiac effects it, he blurts out "You don't have Celiac Disease". I said it is listed in my record, and he said no, it was not. I said I had printed out the record, and saw the diagnosis there, and he said "Yes, it's there, but the other Doctor was wrong, you don't have Celiac Disease". I was so shocked and don't know what to do. I was soooo sick, and really don't want to go back to that, but I also don't want to be called a fraud. It's so disheartening. And yes, it does make you feel burned out.
@@shakeyj4523 super interesting, did you ask him why he thought the other doctor was wrong?
@@celiacnutrition Yes I did. He said because my follow up blood test 4 years after the diagnosis was normal. He said it was impossible not get some gluten, so your check up tests will never be normal. I just made an appointment with the Gastro who diagnosed me, so we will see what she says. Since I had one experience where I bought beans online, and they said Certified Gluten free, and then I got sick over a couple of months, so I checked the actual bag, and it not only did not say certified, it said "Processed on equipment that also processes wheat". I got better again after not eating them.I became VERY cautious and strict after that. I have not been sick since, and I never eat out. He said if I started eating gluten again, and got sick, he would not give me any medication for the symptoms.
@@shakeyj4523 I have been diagnosed for a little over a year, and my blood work numbers went from 250+ to 1.6. The lab notated on my latest report “no indication of celiac disease“, but I was diagnosed with an endoscopy and biopsy last year, so I know I had and still have celiac disease. The low number is just an indication that I am being vigilant with my GF diet. Maybe your numbers were very low, too, and the new PCP is not that familiar?
I am 89. Found out I am Celiac 2 yrs ago. No specialist here. Ins does not pay for tests or care. Family does not acknowledge possibly they are also Celiac. I am on Medicare and partial Medicaid. I get where eating is just a chore. Food is bland as l am also sensitive to salicylates. Tonight I just don't feel like eating at all.
I am so sorry your family is not supportive and there are no specialists near you.
I don't know if it will help, but you can deduct the costs of Celiac Disease on Taxes. The food is expensive and so are any supplements you may have been told to take. Since supplements are considered basically food, you can deduct them. The downside is that you have to itemize, which means you have to keep track of what you eat that is specifically gluten free. Check with your senior center too. Some have meal plans that also can help. Some Senior Centers have people who can give tax advice too. You might be able to add the food to the medical deduction. Good luck!!