Yes candida… be careful of dog food and “torula yeast” now showing up in human food too. Torula yeast is candida yeast. Supposed to be dead as a food additive, but I don’t trust it. It’s hard to fully kill a yeast.

God bless those doctors.

Quote: ” I think my Japanese doctors found out what was wrong because they they were humble enough to admit they had no idea and keep testing until they got there. ”

I read a lot of research and whenever I come across a Japanese article I read that one first, because like everything, I know there will be thoroughness there. They do a good job on medicine, and they have good scientific and experience based reasons for being extra careful about vaccines. In their case, that’s not a bad thing. It’s the old Neanderthal genetics coming out of hiding again, I think. But I won’t go into it, it would require a lecture. Look into what happened with HPV vaccines in Japan and you’ll see, they have good reason for their caution. Caution is a good thing with the practice of medicine.

Humility in a doctor is the greatest gift in the profession.

Quote “Called and said everything looks great! You are fine! Seriously? My body was rejecting all food, I was losing a lb a day, I couldn’t walk or hold a coherent conversation…and I was fine??? ”

Yeah this. I ended up going to the hospital 6 or 7 times and getting all sorts of scans, drinking all sorts of contrasts, being spun and flipped around in big machines. The result? Oh you’re bloated. Use gas-x. Everything else is fine, you’re fine, probably stress, try to relax. For months I kept using gas-x. But it didn’t help much.

I started doing “high enemas” and going to colonic irrigation. That’s where they put a hose in your butt and literally wash out your colon with water. It helped with feeling sick. I felt better after. But it didn’t solve anything. Nobody there even suggested I may have a Celiac problem.

The down side of “colonics” is that some of them use tap water. Tap water in the US is crap. So they’re washing my flora away and possibly doing it with contaminated water. After the colonics I started to massively gain weight. Now nobody was going to say I have Celiac because I was “fat.” And people with Celiac are too skinny.

People kept saying things like “I would say you have cancer and test you for that, but people with cancer lose weight, they don’t gain it.” Then they’d suggest I lose weight. At least 5 doctors said something like that, one of them said that “sick people are skinny, so you’re just eating too much and making yourself sick.”

By that time I’d been in agony for over 10 years, with no diagnosis that helped. I found FODMAPs and tried that. It helped, but wasn’t a cure. I found Keto and that really helped a lot. But soon after, I realized it was probably Celiac. An elderly care expert we had called to help us with caring for my Mother in Law said she really thought I had Celiac. At the time I thought it was “a fad” and it took me a few months to accept the idea. When I mentioned it to my doctor he didn’t immediately test me. My cheat day with keto usually included wheat bread. But overall I was feeling better.

Then I got my 23andme results with the most significant finding being that I had the Celiac gene, one of the two HLA-DQ8. I felt like a dolt for not listening to the elderly care expert. I also have a very high percentile when compared to other people who’ve had their genetics tested, for having Neanderthal genes. I am a member of a forum for Chronic Fatigue / Myalgic Myoencephalitis sufferers. That’s another whole mess you can look it up on your own. They also said they have a lot of Neanderthal genes. Some of them had even higher percentiles than mine. It basically means you’re likely to have autoimmune issues, especially if you’re exposed to viruses.

My doctor said he couldn’t test me for celiac, I was already eating GF. But he did anyway, just in case, and of course it was negative. He was more helpful on the ME/CFS, he found that I was still responding actively to Epstein Barr, meaning it was reactivating, probably cyclically. We also found that Cytomegalovirus was actively being fought by my body in a reactivation sort of way. We broke the EBV cycle with Valtrex. I still take that regularly. I was already on Celebrex for Arthritis. Valtrex helped a lot. Still does. I don’t know if there’s any specific med for Cytomegalovirus. Probably not since it’s supposed to be “harmless” after your body deals with it.

But around the time that I was first being gaslit by doctors about my gut issues, I also had blood clots in my lungs and that destroyed my endurance. I’ve never fully recovered from that. Nobody ever did a TB test on me. I’ve mentioned it several times. I don’t know what their problem is with testing people for that. When the blood clots happened they also went to my brain and supercharged my migraines, they were daily. If there hadn’t been stabbing in my chest upon breathing, I’d probably have died of a stroke in my 30s. They diagnosed pleurisy, and did a CT scan and saw the clots. They were amazed I was alive.

But learning more and more about how strict you have to be to be truly gluten free, that’s been the real superpower. The more strict I am about GF first, and Organic second, the better I feel and the more days I have when I don’t just lay in bed hating being alive. It’s not over for me, it wasn’t “just celiac” I was dealing with, but Celiac is a big piece of it, without which, nothing else would make any sense. There would be too much symptom noise to be able to figure anything else out.

If nothing else, then for the reason that your doctor, who relies on subjective description of symptoms for diagnosis, can’t help you if they ignore Celiac, Celiac should be tested for early and often.

I hear you, and I’m in that zone also. Gastros do see a lot of last resort cases, but it is no grounds to guilt everyone else who is also suffering or struggling. You may not have cancer but ongoing gastric inflammation is not going to lead anywhere good in the longterm. I’ve gone around the houses, and I can share the following learning if of help: 1) gluten is a lectin, and lectins in general may be an issue for you – they are in a lot, if not most, plant based foods and eggs. Check of Dr Gundry and his stuff on lectins; 2) it may be histamine intolerance, and high histamine foods will kick off coeliac-like symptoms and multiple food intolerances; 3) histamine intolerance is also linked to Mast Cell Activation Syndrome – MCAS – that too can have coeliac-like symptoms and food intolerance issues; 4) check out Small Intestinal Bacterial Overgrowth – SIBO – this occurs in people with coeliac and causes digestive symptoms. Can lead to other food intolerances, and tends to feed off high carb and high fibre foods. This can underpin histamine intolerance and once treated (you need a SIBO test and then antibiotics to treat it) histamine intolerance/food intolerance may decrease; 5) Fodmap is the latest cop-out for gastros who haven’t got a clue. Used to be the go to codology of IBS – fodmap diet is only followed for a period of time and issue is meant to resolve in time 6) check out candida overgrowth – also common in coeliac as gut biome is disrupted and candida grows out of control. It causes gut permeability and food intolerances; 6) check out how gluten free ‘gluten free’ food is – spoiler alert, it’s not. Codex level allowance of 20mg gluten per 1kg food weight – if you eat a lot of commercial gluten free foods, that adds up over days and weeks and the damage is cumulative. Also, many gluten free foods have over 20mg per 1kg, many are not properly tested and the gluten testing may not work in certain food types, e.g. distilled or fermented liquids.

Pretty amazing story, and congrats on the start-up and the baby! I just feel angry when I see how negated people have been for so long. There are human impact stories beyond the coeliac, so things like people losing babies in pregnancy, or losing jobs due to poor health. Just crazy that something that effects 1-100 people (as we are told – I suspect it’s way higher) is so poorly understood by medical profession. You want to just scream at these people and shake them to wake them up. It’s treating bits of the body as well that drives me mad – like all bits of your body are spare parts and entirely unrelated to each other. Western medicine makes no sense and I do wonder if the Eastern influence of seeing the person as a whole and a system, rather than bits and bobs, is what made the difference for you in Japan, in addition to the ability of doctors to be humble in failing to diagnose you and making sure they stayed on the case until they did. I find if a test result is negative in the UK, they just park it there and no one ever progresses anything beyond that point unless you push it. Such a crazy way of treating health problems and ultimately costs the healthcare system more in the longterm.

Once I had the IBS label, most doctors ignored my GI symptoms. For my other symptoms, tests were run, medication was prescribed, symptoms were blamed on medication side effects, but I continued to get worse. Eventually my rheumatologist suggested Celiac disease or gluten intolerance, but she couldn’t order tests because it was outside of her specialty and the hospital didn’t allow it. She even opened the computer program and showed me the list of tests she was allowed to run, and together we looked for Celiac tests and didn’t find any. I went to my primary care doctor, who told me I was “buying into the fad” and obviously didn’t have Celiac. At my insistence she finally sent me to a nutritionist who, it turned out, knew nothing about Celiac and had to research it all herself.

Several years later I was on a new health insurance that didn’t require referrals, and I was able to see any doctor I wanted (who takes the insurance, of course) and for the first time I saw a GI who specializes in Celiac Disease. I was in my 30s by then and had been having symptoms since childhood. Now I’ve been gluten-free for 9 years and finally feel so much better, but I still have a lot of issues. I developed co-morbidities and have permanent damage to my body. I wonder sometimes how much of that could have been prevented if only I’d seen a good doctor early on.

He sent the biopsy to a US lab for confirmation and ordered DNA testing (they already had me on an “everything free” diet so antibody testing came back negative). The DNA test showed the prerequisite defect (TLA-DQ2 in my case though DQ8 will also do the job).

I had been getting progressively sicker for 7 years before the diagnosis and had many of the same bad experiences reported above with doctors in the US, the UAE and Singapore.

The only moral I can extract from the story is don’t give up until you find a doctor who takes you seriously. I think my Japanese doctors found out what was wrong because they they were humble enough to admit they had no idea and keep testing until they got there.

I will be forever grateful to the physicians who treated me in Japan. 3 years after diagnosis I am symptom free 95% of the time, I have married a wonderful lady and had a baby that I was previously told I was incapable of having. And I quit my job and am now running a very successful startup.

As Winston Churchill said, “Never give up, never give in…”

I’m surprised nobody tested you knowing your mother was Celiac. What a shame. I found out in my 40’s and even though several family members have GI issues and other autoimmune problems they all refuse to get tested. It’s bizarre. I know it’s because they don’t want to give up favourite foods etc.
It’s great you’re feeling better.