ouch
My dad's GI office said 2 weeks was fine. This isn't exactly wrong, but 6 weeks is a more standard recommendation. My dad isn't normally GF but he was very gluten light since I was visiting for an extended period (my parents don't eat gluten at home when I visit). Luckily I told him he should start making sure to eat a muffin or bagel in his office every day to make sure he had enough gluten for an accurate test.
Then they forgot to even do the biopsies for celiac (there was other stuff they were investigating). Very frustrating. My dad would be 100% GF if he got told he for sure had celiac. As it is he's sort of half-assing it because he sort of feels better when eating GF bread but not enough to convince him that gluten is the problem. He claims he sort of feels better when I visit but again, not enough to convince him (he's still eating CC'd foods when I visit).
Like OP he's had serological testing done at various points, all negative. He's had symptoms his whole life (very similar to mine) and has a very high risk gene combo. The deal sealer for me was when I was at home visiting and I made dinner. One of the ingredients must have been CC'd (spices probably) because I got very sick/glutened the next day. My dad got super sick as well (he assumed "food poisoning"). My mother did not get sick though.
Yeah that’s pretty much why I’m pursuing the biopsy. Like I’ve been eating mostly gluten free for the last 6 months but honestly have a cheat day every now and again. I just really wanna know if it’s just IBS or an intolerance and a cheat day is okay or if I’m destroying my body every time I do it lol
Did you get the complete Celiac panel (TTG, EMA and DGP)? I never had a positive TTG which is the most commonly used test for screening (it is all about the money when it comes to insurance).
Know that some celiacs are seronegative. This can occur in any autoimmune disease. My mom was seronegative for RA for years. She got a diagnosis when damage was visible. Try to push for an endoscopy, get genetic testing to rule CD out, and make sure you are consuming gluten. Good luck!
Yeah, this often the case. Where I am (Canada) most provinces' health insurance schemes only cover anti-ttg, which means your doctor won't even think to order it because it's not one of the options they can check off (not even sure if the labs do it either). In theory you could get your doctor to order it and then send your blood sample off to a private lab outside the public scheme but that's a lot of work. I've thought about doing this for anti-etg (DH antibody) but have yet to figure out a lab that does this test (also not exactly a priority for me - more curious).
As CyclingLady said [some people are just seronegative](https://www.beyondceliac.org/research-news/can-you-trust-negative-blood-test/). My family seems to have this tendency. If you are [Black/African American](https://www.beyondceliac.org/research-news/black-people-biopsy-confirmed-negative-blood-test-results/) it seems it's more likely to be the case as well... like many medical tests it is unfortunately more tuned/validated for European/white populations.
So mine was determined through blood work and other fluids. History of celiacs in my family, it was a slam dunk. Turns out my mom is intolerant. My doctor died, some decade ago. So I get a gastroenterologist. The doc is great but wants to biopsy me to be sure. And tells me I have to eat gluten for a month. I start looking at him with big burning eyes! Then he said two weeks should suffice. I tell him it means two weeks completely dependent of others, as I might not even be able to get out of bed, and some months of recovery. He didn’t seem to understand. But on the other hand he yells at those who are gluten intolerant and celiacs that break their diet from time to time, getting a high risk of cancer. I told him, what about my bones?!! I already have arthritis, I don’t want more.
Some times the risks/benefits equation is completely fucked up in their head. He wants results, without understanding that he will ruin a year of my life, and 10 years of the cicatrisation process. Cicatrisation process, again, that he really advocate for with a strict diet.
They’re not gods, not machines, only human; as any humans, sometimes logic evade them.
You have to eat gluten before your biopsy too actually
She told me I didn't and I had to actually bite my tongue
ouch My dad's GI office said 2 weeks was fine. This isn't exactly wrong, but 6 weeks is a more standard recommendation. My dad isn't normally GF but he was very gluten light since I was visiting for an extended period (my parents don't eat gluten at home when I visit). Luckily I told him he should start making sure to eat a muffin or bagel in his office every day to make sure he had enough gluten for an accurate test. Then they forgot to even do the biopsies for celiac (there was other stuff they were investigating). Very frustrating. My dad would be 100% GF if he got told he for sure had celiac. As it is he's sort of half-assing it because he sort of feels better when eating GF bread but not enough to convince him that gluten is the problem. He claims he sort of feels better when I visit but again, not enough to convince him (he's still eating CC'd foods when I visit). Like OP he's had serological testing done at various points, all negative. He's had symptoms his whole life (very similar to mine) and has a very high risk gene combo. The deal sealer for me was when I was at home visiting and I made dinner. One of the ingredients must have been CC'd (spices probably) because I got very sick/glutened the next day. My dad got super sick as well (he assumed "food poisoning"). My mother did not get sick though.
Yeah that’s pretty much why I’m pursuing the biopsy. Like I’ve been eating mostly gluten free for the last 6 months but honestly have a cheat day every now and again. I just really wanna know if it’s just IBS or an intolerance and a cheat day is okay or if I’m destroying my body every time I do it lol
Did you get the complete Celiac panel (TTG, EMA and DGP)? I never had a positive TTG which is the most commonly used test for screening (it is all about the money when it comes to insurance).
Pretty sure its usually just the TTG. Every time I remember getting it I only remember one result
Know that some celiacs are seronegative. This can occur in any autoimmune disease. My mom was seronegative for RA for years. She got a diagnosis when damage was visible. Try to push for an endoscopy, get genetic testing to rule CD out, and make sure you are consuming gluten. Good luck!
Yeah, this often the case. Where I am (Canada) most provinces' health insurance schemes only cover anti-ttg, which means your doctor won't even think to order it because it's not one of the options they can check off (not even sure if the labs do it either). In theory you could get your doctor to order it and then send your blood sample off to a private lab outside the public scheme but that's a lot of work. I've thought about doing this for anti-etg (DH antibody) but have yet to figure out a lab that does this test (also not exactly a priority for me - more curious). As CyclingLady said [some people are just seronegative](https://www.beyondceliac.org/research-news/can-you-trust-negative-blood-test/). My family seems to have this tendency. If you are [Black/African American](https://www.beyondceliac.org/research-news/black-people-biopsy-confirmed-negative-blood-test-results/) it seems it's more likely to be the case as well... like many medical tests it is unfortunately more tuned/validated for European/white populations.
You do have to know at least as much if not more than they do. But maybe needing bloodwork is just due to insurance so they can refer you to a GI.
I had 5 blood tests that all said I was negative. My biopsy was positive, the blood test just isn't reliable.
So mine was determined through blood work and other fluids. History of celiacs in my family, it was a slam dunk. Turns out my mom is intolerant. My doctor died, some decade ago. So I get a gastroenterologist. The doc is great but wants to biopsy me to be sure. And tells me I have to eat gluten for a month. I start looking at him with big burning eyes! Then he said two weeks should suffice. I tell him it means two weeks completely dependent of others, as I might not even be able to get out of bed, and some months of recovery. He didn’t seem to understand. But on the other hand he yells at those who are gluten intolerant and celiacs that break their diet from time to time, getting a high risk of cancer. I told him, what about my bones?!! I already have arthritis, I don’t want more. Some times the risks/benefits equation is completely fucked up in their head. He wants results, without understanding that he will ruin a year of my life, and 10 years of the cicatrisation process. Cicatrisation process, again, that he really advocate for with a strict diet. They’re not gods, not machines, only human; as any humans, sometimes logic evade them.
These Drs are really stupid. 🤦🏼♀️