91–100 of 131 posts
> But doctors never definitively diagnosed Johnson with celiac disease. His doctors wanted to do a biopsy to get a definite answer, but that would require eating gluten again, something Johnson wasn’t willing to chance. How about this for an app idea? Does this already exist? Use the app to record all the food consumed. Use AI to read restaurant menus, cereal boxes, ect. Give the user a survey every 1 hour. Make eati…
Oh wow, I have the first half of this situation. I went through a period where my digestion was so bad that it was affecting my ability to function from day to day. I didn't get anything useful from my gastro; I even had a negative celiac antibody test. Eventually I started rigorously tracking everything I ate against my symptoms, and after a few months I was able to draw a strong correlation with gluten intake. From…
> I even had a negative celiac antibody test. Note you can also check your genetic config.log to see if there was a -DALLOW_CELIAC flag in your source build. Unfortunately your body's settings dialog is shit and does not show you whether or not that feature is set to on or off. But if you were built without that flag then you lack the code for the Celiac algorithm altogether and are good to go. (There may be other se…
https://www.salon.com/2002/08/28/0wnz0red/
(shit, >20 years ago!)
Earlier quoted context omitted.
You need to prove your knowledge to doctors contextually, and even then it's much easier if they are not actively giving you a consultation. Doctors don't respond well to randomly dropping theories on them. If you respond to something by dropping an inappropriate paper for the illness or ask about rare issues when common ones would fit they'll stop listening. Most of the people a doctor gets either almost can't read…
I actually had a discussion about this with a very experienced gastroenterologist. They said that doctors love data. Don't come at them with theories or papers. Give them a food diary + symptoms, it helps a LOT more than "I think I have X".
“If forty thousand dollars of student loan debt paid for anything, it’s to be able to eat chocolate chip cookies again,” he says. That's sort of how I felt about my student loan. Doctors who didn't take me seriously as a mostly bedridden homemaker went full nuclear and put me on like 8 or 9 prescription drugs when I told one "I took out a student loan for this summer program. I cannot afford to drop out."
“If forty thousand dollars of student loan debt paid for anything, it’s to be able to eat chocolate chip cookies again,” he says. That's sort of how I felt about my student loan. Doctors who didn't take me seriously as a mostly bedridden homemaker went full nuclear and put me on like 8 or 9 prescription drugs when I told one "I took out a student loan for this summer program. I cannot afford to drop out."
Was it successful?
"Giardia lamblia, occasionally called “beaver fever,” is an easily treatable intestinal parasite, unlike celiac disease. If you’ve been backpacking long enough, you probably know someone who’s gotten it. Giardia is normally an acute infection that causes diarrhea, horrendous gas, and other intestinal malaise, but doctors can corral it easily with antibiotics. The chronic form of giardiasis is lesser known, however. The friend sent Johnson medical studies showing how chronic Giardia infection can cause celiac-like symptoms. "
Anecdotal, but this (likely) happened to me. For a year, my body could not digest gluten. My doctors tested me for celiac antibodies and all tests came back negative. A gastroenterologist asked if I had taken anti-biotics at any point. I had: 12 months prior I had gone swimming near a landfill, gotten sick, and my primary care doctor had prescribed antibiotics (suspecting giardia). This final GI doctor asked if I had…
This is entirely anecdotal, and n=1, but I have seen a sailing YouTuber who claimed that she was unable to tolerate gluten in the USA, but once in Europe there was no problem. She assumed that it was related to agri-chem in the USA. Does anyone know which grain related agricultural products are used in the USA and not in the EU?
Earlier quoted context omitted.
Thanks, I'm certainly going to try that. I was more asking if anyone has experience getting tests done properly in light of their low accuracy. From what I understand, an antigen test is still a stool test, meaning they are only 50% accurate. As a commenter on this post shared, managing the health system is challenging in this area. I just did a bit of googling, and found a couple of leads here: > CDC recommends coll…
> From what I understand, an antigen test is still a stool test, meaning they are only 50% accurate. “Accuracy” is too vague. You want to find out what the sensitivity and specificity are. https://ebn.bmj.com/content/23/1/2 For instance, a rapid covid test might have low sensitivity but high specificity. Meaning if it’s negative, you could still have the disease. But if it’s positive, you’re almost certainly sick. Ie…
Oh wow, I have the first half of this situation. I went through a period where my digestion was so bad that it was affecting my ability to function from day to day. I didn't get anything useful from my gastro; I even had a negative celiac antibody test. Eventually I started rigorously tracking everything I ate against my symptoms, and after a few months I was able to draw a strong correlation with gluten intake. From…
I stopped eating gluten and the associated antigens went down to normal levels. I don't feel any better or worse though.
The literature says there are false positives, and I've always wondered if might be one of them. I've searched celiac forums and I've never encountered anyone with a false positives diagnosis. Lots of false negatives or non-celiac gluten sensitivities though.
I do have the gene required for celiac disease, but most who have this gene do not have celiac disease.