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Seeing a dietician in a few days, advice?

bigmillz

Senior Member
Messages
219
Location
NYC
Long story short I plan to tell the dietician:
Got 23andme test to explore and improve my health, was led to believe I would benefit from excluding sulfates/thiols from my diet, doing so made a huge difference in mood/energy/skin appearance. In trying to narrow down exactly what foods might be causing an issue, also decided to try removing FODMAPs, then gluten and dairy. All of these made similar (but not as great) improvements as removing sulfates/thiols. Reintroducing brought back some symptoms, but not fully. The entire time I've been taking a molybdenum supplement, which recently ran out, and it appears to have made a very significant difference (reintroducing in a few days when more arrives to confirm). I know molybdenum can have an impact on sulfates.

Basically I'm at a toss up between sulfates and FODMAPs, or various specific food intolerances that are causing issues for me. Between delayed reactions and all, it's become impossible and impractical for me to continue to troubleshoot on my own. I don't have any strong immediate skin reactions to anything, such as hives, to help confirm.

Garlic and/or onions, peanuts, and sometimes gluten appear to trigger the strongest responses in mood/energy. Pistachios and apples give me a painful amount of bloating almost immediately.

Anything else anyone here would suggest mentioning based on the above? I'm paying the big bucks out of pocket for a really good NYC dietician who can run the MRT test for food sensitivities as well, so I'm not afraid to push for what I want here.

Thanks for reading. I just want to get to the bottom of this, and live my life one big step closer to its fullest, and not continue to drive myself and those around me nuts with my self-performed elimination diets.
 

helen1

Senior Member
Messages
1,033
Location
Canada
Basically I'm at a toss up between sulfates and FODMAPs, or various specific food intolerances that are causing issues
It sounds like they're all causing you trouble if you saw improvements after cutting out each.
 

bigmillz

Senior Member
Messages
219
Location
NYC
It sounds like they're all causing you trouble if you saw improvements after cutting out each.

For sure. I'm hoping to narrow it down so that I can only exclude a few foods. Cutting out all of it is pretty much going to remove any enjoyment of eating from my life.

Thanks, you actually just gave me a much simpler way to explain it to the dietician when I see her :)
 

helen1

Senior Member
Messages
1,033
Location
Canada
What many of us find is we need to exclude lots of foods until our GI tract heals, after which it's able to tolerate more types of foods.

But for the first months or however long it takes of treating your gut, you probably do need to exclude all those foods. Your gut won't heal if you keep throwing harmful things at it.
 

bigmillz

Senior Member
Messages
219
Location
NYC
What many of us find is we need to exclude lots of foods until our GI tract heals, after which it's able to tolerate more types of foods.

But for the first months or however long it takes of treating your gut, you probably do need to exclude all those foods. Your gut won't heal if you keep throwing harmful things at it.

True, probably explains why I'm handling the foods a bit better after reintroduction. Not great, but better.

That said, still hoping to narrow it down to some more specific foods or groups - I don't want to end up malnourished.
 

Timaca

Senior Member
Messages
792
I hear you. I am in the same boat and my background is nutrition! I worked as a dietitian for several years and never imagined I had food intolerances!!! :eek: I've been doing an "elimination" diet for 3 years now and still trying to figure things out.

There are some books on the resources page of my blog that have helped me. It *seems* I have a histamine intolerance and a possible benzoate intolerance. Wheat is definitely out. Likely dairy too. Seeds and nuts are very suspect and I need to rechallenge them. Ditto for oats and corn. I did not find blood testing for IgG responses to food to be helpful.

It really does come down to elimination of foods and careful rechallenge. The only difficult thing is that with CFS you have to realize that some issues are food issues and some are CFS issues.....and it is HARD to tell the difference sometimes.

Having said that, I am much better having eliminated a lot of foods. I eat primarily rice, sweet potatoes, yams, winter squash, low histamine vegies, legumes, some fruits and some fish (on occasion).

I have never heard of eliminating thiols from my diet.....hmmmm.....looking it up, my diet is very high in thiol containing foods so that must not be an issue for me!!

Keep us posted!!
 

bigmillz

Senior Member
Messages
219
Location
NYC
Oh, and here is the resources page to my blog: http://www.youseasonwithlove.com/resources/

Awesome, thanks a ton for sharing, and for the link! I'll take a peek.

I couldn't imagine fighting at it for 3+ years...although in hindsight, I have been trying different diet changes with varying success for a while. Eating generally healthier, removing my ice cream addiction, and no longer drinking alcohol all made huge improvements.

I'm writing a summary of my food log for the dietician, and realizing there's a strong connection between my symptoms and something on the thiol list. The improvement every time I remove those foods is unbelievable - every time I commit to it, I feel like an entirely new person!
 

Timaca

Senior Member
Messages
792
is it one or a few things on the thiol list?? what foods are problematic for you as far as you can tell?
 

bigmillz

Senior Member
Messages
219
Location
NYC
is it one or a few things on the thiol list?? what foods are problematic for you as far as you can tell?

Not sure on the first part - I haven't been able to go through food by food (I wish the list were shorter!).

Peanut butter definitely causes a problem. Garlic/onions, something in a beef/lamb/rice/hummus plate, and excess dairy or gluten seem to cause problems too.

I faired pretty well this past weekend too; I was on a trip where I didn't eat much garlic/onion (extremely hard to avoid when eating in NY normally).
 

Timaca

Senior Member
Messages
792
I don't do well with peanut butter either. Or almonds. When I recently retested macadamia nuts I got a bad headache. I've been afraid to try other nuts but I will because I need calories. Sunflower seeds did NOT work for me. Animal protein in general doesn't work for me because it is too high in histamine. So I started to eat very fresh fish and did OK until my mercury levels went high (measured in the blood). This shocked my doctor and myself so I cut out the fish and my levels returned to normal. So, I eat legumes now.

I wonder if sesame seeds in the hummus was the problem. Can you eat hummus? Can you eat chickpeas?

Out of the foods you mentioned: gluten, dairy, peanuts....those are all top allergen foods. If sesame seeds are a problem (tahini is made from sesame seeds and is in most hummus)....well, seeds are in the top 10 food allergens. (The other being corn). Garlic and onion are not top food allergens of course, but as you noted they are FODMAPS. I'm not suggesting you have an IgE allergy to foods, but like me, you might have food intolerances to the foods that tend to cause the most allergic reactions in people. That's why, for the most part, I'm not eating the top 10 food allergens, and I'm watching what I eat histamine wise..... That *seems* to be where I currently find myself....but of course I'm always looking to see what exactly is going on......

I'm traveling for a couple of days so I might not be able to respond...but I am interested in what you are determining, because I'm in the same boat.....
 

bigmillz

Senior Member
Messages
219
Location
NYC
I don't do well with peanut butter either. Or almonds. When I recently retested macadamia nuts I got a bad headache. I've been afraid to try other nuts but I will because I need calories. Sunflower seeds did NOT work for me. Animal protein in general doesn't work for me because it is too high in histamine. So I started to eat very fresh fish and did OK until my mercury levels went high (measured in the blood). This shocked my doctor and myself so I cut out the fish and my levels returned to normal. So, I eat legumes now.

I wonder if sesame seeds in the hummus was the problem. Can you eat hummus? Can you eat chickpeas?

Out of the foods you mentioned: gluten, dairy, peanuts....those are all top allergen foods. If sesame seeds are a problem (tahini is made from sesame seeds and is in most hummus)....well, seeds are in the top 10 food allergens. (The other being corn). Garlic and onion are not top food allergens of course, but as you noted they are FODMAPS. I'm not suggesting you have an IgE allergy to foods, but like me, you might have food intolerances to the foods that tend to cause the most allergic reactions in people. That's why, for the most part, I'm not eating the top 10 food allergens, and I'm watching what I eat histamine wise..... That *seems* to be where I currently find myself....but of course I'm always looking to see what exactly is going on......

I'm traveling for a couple of days so I might not be able to respond...but I am interested in what you are determining, because I'm in the same boat.....

I seem to be fine with sesame - I eat a lot of sushi, and haven't had an issue with that. Although when I cut out thiols, I was ordering my sushi without the seeds lol.

I did have some hummus, and it led to some symptoms. I suspect the place I eat it at makes everything in house, so there's cross contamination, making it hard to track down.

I'll keep you in the loop, and thanks for your advice!
 

aaron_c

Senior Member
Messages
691
How do eggs sit with you? They have a lot of sulfur in the form of methionine, I think. I ask because this might be a helpful "poor man's" test to determine if the garlic/onion issue is sulfur or FODMAP-related...or both, I suppose, if you get some symptoms but not others.

Speaking for myself, I am a little leery of the idea of sulfur avoidance if the problem can be fixed by taking more molybdenum. I have a hard time seeing long-term avoidance of a nutrient as doing anything but causing problems.

I'm not saying that the body can't adapt to lower sulfur intake...the question (to which I do not know the answer) is how does it do this? Will you produce less taurine, glutathione, and metallothionein? Will phase II detoxification in the liver get backed up from lower-than-necessary sulfation? Or can we conserve sulfur in a more benign way?

Obviously I don't know a lot about this.

For what it's worth, I take 1500 mcg of molybdenum daily. I know some people consider that to be excessive, but it seems to work for me, and has for years. My last hair mineral analysis found no problem with molybdenum levels, and I haven't run into any "molybdenum toxicity" symptoms...in short, I think it's a good dose for me.

So there might be some other options.

I wish you the best with whatever experiment you end up trying.
 

brenda

Senior Member
Messages
2,266
Location
UK
I spent many years adjusting my diet, trying various ones, with some improvement going gf,/df/sf but not enough to make me feel that l had cracked it until l adopted the Terry Wahl's autoimmune paleo to heal my gut. No seeds nuts grains potatoes dairy and all meat grass fed 100% and a large amount of vegetables and now, even no bone broth, until for the first time, l sleep all night.

Yes it's tough but it should not be too long before l can reintroduce at least bone broth which will help them gut heal. Once you feel you are healing, it gives the motivation to continue.

I feel that it is most beneficial to concentrate on the Gut lining rather than other problems, well it has been that way for me. If you go for other things you end up eating unhealthy foods like white rice when we desperately need every mouthful that goes into our mouths to be nutrient dense.
 

Timaca

Senior Member
Messages
792
Brenda~ I am familiar with Dr. Wahl's diet. I was a bit confused by your post. Are you sleeping all night now, or waiting to get to that point? How has the diet made you feel better and how long did that take?

I certainly agree that our bodies need nutrient dense foods to allow for healing.
 

brenda

Senior Member
Messages
2,266
Location
UK
@Timaca

I am sleeping now, full night's, for the first time for 30 years, believe it or not. Lots of other improvements and have stopped crashing. I saw some improvement after the first day in lowering carbs but it took a few weeks to get fully on it and off grains completely. I am doing stage 2 but would prefer to be keto and cannot because of my thyroid. . I believe that the masses of vegetables are significant in my healing like Wahl says.

This is going on for three months and the best thing l have done.
 

Timaca

Senior Member
Messages
792
@brenda ~
Glad to hear that is working for you! I also eat a LOT of vegetables...that makes up the bulk of my diet. However, my diet is very high carb....lots of sweet potatoes, yams, legumes, in addition to green and yellow vegies. I don't eat meats or oils as it causes my lipid levels to go too high. Also, every time I challenged meats I got headaches....until I figured out it was likely histamine in the animal protein that was causing the problem. So I ate very fresh fish, then my mercury levels went too high, so now I eat fish rarely. I was off all grains also, until recently I added in rice and seem to do OK with it. I am grateful for the variety it offers me (and for being able to order something when I go out to eat!)

Good for you and I hope your healing continues!!! I wonder if you had a food intolerance to something you were eating and it has cleared up with the elimination of grains and dairy......
 
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boohealth

Senior Member
Messages
243
Location
south
@Timaca

I am sleeping now, full night's, for the first time for 30 years, believe it or not. Lots of other improvements and have stopped crashing. I saw some improvement after the first day in lowering carbs but it took a few weeks to get fully on it and off grains completely. I am doing stage 2 but would prefer to be keto and cannot because of my thyroid. . I believe that the masses of vegetables are significant in my healing like Wahl says.

This is going on for three months and the best thing l have done.

@brenda what ever happened with your rife experiments?