A rant about chronic illness diets

I can definitely understand your frustration. I never understood what it is about diets that makes people so opinionated on what the "best one" is.

I hope you feel better soon. This herx will pass.

The problem is these online Drs assuming this or that dietis good for everyone. And then not explaining that there are various tests that can point you in the direction of a diet best suited for you.

I tried all of them and did them in a good order to figure it out. And tested before and after a new diet with the help of a functional type Dr.

There is even an oxolate blood test, my insurance covered it, before and after elimination time period. I eat nuts every morning because they do no harm to me (tested ), even with autoimmune.

Guessing only gets you so far.

Post Edited (astroman) : 3/1/2023 8:29:22 AM (GMT-8)

I haven't dived deep into food allergy testing, but from what I've read it seems that the consensus is that IgE antibody testing can reveal true food allergies, but IgG testing is not reliable for identifying food sensitivities. If that is true then I'm not sure how beneficial those tests can be.

astroman said...
Food allergies, sensitivities, and intolerances are three different things. The last two are obviously pretty close.

There is also Cytokine testing per individual foods, Which is something I mentioned in a post halfway down this page. This made a positive health change for me proven by testing and symptoms. But I did this after lyme was cured to help with autoimmune.

I’m not too good at explaining this. If there is some type of food or food group your body find offensive there may be other changes certain Tests can show. This is why I had a doctor help me with this, I don’t remember much of it.

These online doctors assuming everything works for everybody is somewhat of a joke. That doctor Berg who gets high reviews. Hes not all that good either. It’s all the same repeated BS. Resources aren’t that helpful if you’re not guided how to actually use them.

To be clear, I def don't consider myself well read on this subject I'm just going by what I've found. I googled cytokine food test which brought up the "ALCAT" test.

Here's some quotes from an interesting article published last September in the NYT regarding food testing. I'll link the article at the bottom.


“There isn’t anything in your hair that would tell you anything about your sensitivity to food,” Dr. Kelso said. And the antibodies measured in the IgG tests are produced as part of the immune system’s normal response to foods; they haven’t been shown to correlate with symptoms or intolerances, Dr. Stukus said. “It’s really just a reflection of what you’ve eaten.”

Similarly, the way blood cells in a test tube interact with food extracts, as in the Alcat and MRT tests, is likely different from how they encounter them in the body, Dr. Kelso said. None of these tests have been subjected to the kind of high quality clinical trials necessary to validate their usefulness for patients, he added. (Oxford Biomedical Technologies, the company that sells a blood cell MRT test, did not respond to a request for comment.)

Christina Song, a spokeswoman for Everlywell, a company that sells at-home IgG food sensitivity tests, pointed to several studies — mostly in people with I.B.S. and some funded by the companies that sell the tests. In them, researchers found that eliminating high IgG foods reduced symptoms like abdominal pain and bloating. But in general, many of the studies that have reported positive results for food sensitivity tests have been small and often lacked proper control groups, said Dr. Lin Chang, a gastroenterologist and professor of medicine at the David Geffen School of Medicine at the University of California, Los Angeles."

"In a small trial of 58 I.B.S. patients, published in 2017 and funded by Cell Science Systems, the company that sells the Alcat food sensitivity test, researchers found that those who avoided foods flagged as intolerant by the test for four weeks reported greater improvement in their symptoms than control participants.

One of the study’s authors, Dr. Wajahat Mehal, a professor of digestive diseases at the Yale School of Medicine, said he found the results convincing enough that he now offers the test to his patients with I.B.S. Yet he acknowledged that most of his colleagues would want to see much larger and longer clinical trials before recommending it.

According to the American College of Gastroenterology’s 2021 clinical guidelines for the management of I.B.S., the study’s results “are intriguing but need to be confirmed.”

“Multiple tests are marketed to diagnose food intolerances; however, none have been validated, and most have not been subjected to rigorous, blinded trials,” the guidelines say."

FOR THE POTENTIAL DOWNSIDES THAT I FIND VALID I LIKE THIS QUOTE FROM ANOTHER DOCTOr IN A DIFFERENT ARTICLE

"There are a variety of home food sensitivity and intolerance tests out there, many of which often provide inaccurate results," Dr. May says. "To effectively determine a food allergy, you need to perform the correct type of testing in combination with a medical history evaluation." Many home tests use a food-specific immunoglobulin G (IgG) blood test that measures antibodies to 87 commonly consumed foods. The problem, says Dr. May, is that IgG antibodies actually demonstrate tolerance to food, not intolerance to food. These are not the allergic antibodies.

"As a result, you may end up with test data that shows a high IgG for many types of foods," she says. "However, there is no research that shows that IgG positivity correlates to intolerance. Due to tests like these, I often have people come to my office with very restricted diets based on their test results and continue to suffer from abdominal symptoms."


SO, after looking into this a bit I'm actually more convinced than not that the ALCAT could potentially, key word potentially, provide useful information about what to trial, key word trial, temporarily eliminating from your diet. The main downside is somebody gets married to their test results then cuts out a bunch of foods unnecessarily potentially leading to disordered eating or malnutrition. However, if the results of the tests were looked at with more an experimental lens and gave you some ideas for trial and error I can see where the potential benefit lies. I'm actually interested in trying this out now.

Link: https://www.nytimes.com/2022/09/13/well/eat/food-sensitivity-test.html

morningstars said...
This is mostly just a rant. I'm not looking for advice on what diet to follow, I don't want to hear anymore about what's supposedly best or what I should try. I'm just confused and sad and maybe curious about how others have navigated their feelings around this, especially if you have struggled with disordered eating in the past.

I just listened to the new podcast from Better Health Guy on oxalates. No shade to him or his guest, I really appreciate all of the work he does. But I just feel so frustrated after watching or listening to anything about diet because everybody has an opinion. Low histamine. Low fodmap. bi-phasic. low oxalates. keto. carnivore. low salicylates. autoimmune paleo/AIP. wahls protocol. anti-candida diet. low lectin. no folic acid. no dairy, but wait, dairy helps metabolize oxalates. build up your gut health, take fermented foods. don't eat fermented foods, they are high histamine! eat a well balanced diet - but actually, only eat meat because every vegetable apparently wants to kill you. eat low fodmap and low histamine, but there's actually no consensus on those food lists. eat green leafy vegetables, they support methylation. don't eat leafy greens!! They are full of oxalates!!!

I KNOW that it's about finding what works for you. But who the heck has the energy to go through all of these things? I thought I had figured out what was best, which was and remains low histamine because MCAS. But that's not the end of the story and I'm just exhausted and literally feel scared to eat. I have MCAS so at this point, after basically not eating much and then noticing I was losing tolerance to foods, I have just added stuff back in as much as possible so that I can have a healthier more well rounded diet instead of like 10-20 foods.

As I'm writing this I'm listening to the BHG's episode with Ben Lynch and it's making me feel better - he says it's about healing the gut and the reason why you have issues with oxalates and histamines or whatever in the first place. Which I theoretically already know, but again in the meantime while you are healing you don't want to be bombarding your body with things it can't tolerate.

I'm just a bit sad. I had a few really good/low pain days recently but am back in a possible herx cycle/not feeling well and higher pain and I'm just done with it all.

Most of these things never worked for me lol. Low fod map was fkn awful not to mention dull and made me lose more weight. Still have gut issues that I just didn't want to be here anymore. I eat leafy greens but then there's thise oxalate. Carnivore did work very good. I do eggs sunny side up and sprinkle nutrionak yeast flakes on them faithfully every single morning. I do NO GRAINS, regardless of others oppinions I think they're bad for you. Salmon is like the best , I love it!! Had salmon last weak and had cramps and floating stools (must have sibo or who knows wth what) one food that had really benefited me in the long run though is salmon. Sometimes I say to hell with it and eat whatever I want until my stomach is screwed some more.i take bile salts which work at times. I now want to try digestive enzymes and mimosa pudica that my llmd is recommending for gut. It's never ending. I'm 5'7 and 107 lbs and have had gut issues for years now. Idk why gives. Normal gallbladder and pancreas tests amd normak sibo test so beats me but it's extremely depressing. My llmd thinks it's definitely sibo though and a mixture of parasites. I know how much this sucks, sometimes I don't want to est at all.