Diet: Swimming upstream

[sierrra]

Establishing and maintaining a diet that complements my minocycline therapy has been one of my more challenging tasks in life, but the payoff has been incredible. I am, without a doubt, sensitive to gluten and dairy products. Other foods, such as beef and pork, also cause pain and swelling. The longer I've been off the troublesome foods, the more clearly I can see the ill effect if I ingest some. It was not clear in the beginning.

Last weekend I went to a wedding where the reception menu was fettucini alfredo. I considered my options: don't go, just eat salad, ask about the possibility of getting another entree. With great hesitation, I mentioned my dilemma to the bride. She was eager to accommodate me. It was a bit embarrassing to be the only one at my long table eating something different (especially when a little girl came along and announced the fact), but I've reached the point where I am absolutely sure that some foods help to make me sick and I'm committed to staying well.

Last night, hubby and I had soy sloppy joes (a mix from a box) on rice buns. I toasted the buns and thought the meal was wonderful! I haven't had a sloppy joe in years, and I used to really love them. Hubby said he thought the meal was bland and he didn't care much for the rice buns. It was a reminder to me of how one can get used to the alternative, non-allergenic foods iin time.

Until recently, I struggled in a big way with cheese. Finally (I hope!) I'm free of that craving. Again, it was finding substitutes that helped. I make a mac 'n cheese with rice noodles and “cheez” made from olive oil, soy milk, nutritional yeast, garlic powder, and salt. It tastes great to me!

My current diet is mostly gluten-free vegan, though I do eat chicken and salmon about twice a week.

The cravings and the social pressures have been the most difficult parts of this endeavor, but I remain committed!

Sierra

[Suzanne]

[user=1037]sierrra[/user] wrote: 

I make a mac 'n cheese with rice noodles and “cheez” made from olive oil, soy milk, nutritional yeast, garlic powder, and salt. It tastes great to me!

Sierra, thank you so much for this inspiring post!   Would you mind sharing this 'cheez' recipe?  I have a dairy-free daughter, and we all miss mac and cheese!  If it would work for nachos, she will be your best friend forever! 

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Tiff]

You are blessed that you have narrowed down the problems.  This issue is a bitter one for me.  I've had no luck finding any connections, and when I attempted to use a blood allergy test to help, it was even more confusing!  Add to that the fact that I have very little weight to lose by experimenting, and no health food store for 150 miles, you have a recipe for disaster (excuse the pun).  I literally dreamed about food all night long when I went gluten free for 2 months despite the fact that I thought I was eating pretty well.  I dropped down to 84lbs, too.  And that did not include dropping dairy (my big weakness) either.  Combine those (gluten/dairy) with my food sensitivities and there was, literally, nothing left.  I had issues with both soy and rice.  No milk substitute at all.  And I could never tell I had any problems.  It was not like I felt bad after eating any of these things, nor have I noticed feeling better when I drop them.  Perhaps I haven't done it long enough, but I just start to starve.  I really do.  Maybe if there was some kind of in-patient program.

:crying:

[sierrra]

The inspiration for my mac n' cheez came from “The Ultimate Uncheese Cookbook” by Joanne Stepaniak. Here's the recipe for Nacho Cheez Sauce and Dip:

1/2 c. flour (any kind)

1/2 c. nutritional yeast flakes

1 tsp. salt

1 tsp. chili powder

1/2 tsp. onion powder

1/2 tsp. hot or sweet paprika

1/4 tsp. garlic powder

1/8 tsp cayenne

2 cups water or plain nondairy milk

1/4 cup olive oil

1/2 tsp. prepared mustard

1/2 tsp light or chickpea miso

Combine the flour, yeast flakes, salt, and spices in a medium saucepan. Gradually whisk in the water or nutmilk, olive oil, and mustard. Cook over medium heat, stirring almost constantly with the whisk, until bubbly, thick and smooth. Remove from heat and whisk in the miso. If you like, you can also stir in 1/4 c. minced cilantro just before serving.

I'll post the mac n. cheez soon!

Sierra

 

[lynnie_sydney]

Sierra – great post. I'm with you in that I've become extremely adapted to what, initially, seemed like the worst (as in restrictive) diet. No gluten, no dairy, no/low salicylates, no sulphites, no pork. I lost about 20 pounds all up – maybe 7 of them were spare! And I found I was terribly hungry at first, in spite of eating every 4 hours (as per doc's instructions to avoid hypoglycaemia). The doc said the continuous hunger was because I was getting some hidden gluten from somewhere. And, indeed, that turned out to be true (hidden in the chocolate sprinkle on top of my daily treat of a capuccino). Once I fixed that, the cravings stopped. I am lucky in that we have really good (i.e. not hard as a rock) gluten and dairy-free bread here that's available in the supermarket. So I get plenty of carbohydrate, which does tend to be an issue for gluten-free diets.

These days, my weight has settled –  I put on about 4 pounds on an overseas trip and they've stayed on, which has reversed the slightly gaunt look I had. I enjoy eating plain, have become the world's best label reader – and cant believe what's in the foods we take so much for granted! I can nearly always manage a variation of food in a restaurant, so am not too restricted socially or too much of a party pooper. I eat a little salicylate these days (though mostly in vegetables and absolutely no citrus). The constant background ache in my knees and puffiness that I think was synovial fluid sitting there went very quickly on this diet and hasnt returned. All in all, it's working well for me. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Lizz]

I'm with Tiff. My allergy tests revealed allergic to dairy, soy and eggs, borderline for gluten. All the changes I've made have gotten no improvement in my condition. Now I'm on plaquenil and it just kills my appetite. So the weight keeps falling off, it's very confusing. I'm really glad food adjusting does so well for some of us, but for me it's a bust!

[lynnie_sydney]

Lizz – you might want to try restricting or cutting out salicylates. There is no test for this, has to be done by cutting out then challenging. It is exceptionally common with people who have rheumatoid disease to be sensitive to them……alot of that because of prolonged use of NSAIDS and/or other salicylate-based pain meds. That and sulphites would be my suggestion to take the dietary component further. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[sierrra]

Mac 'n Cheez Sauce

1/2 cup flour, any kind

1/2 cup nutritional yeast flakes

1tsp. salt

1/4 tsp. onion powder

1/4 tsp. garlic powder

1/4 tsp. sweet or hot paprika

2 cups water or plain nondairy milk

1/4 cup olive oil 1/2 tsp. prepared mustard (any kind)

Combine dry ingredients in a medium saucepan. Gradually whisk in the wet ingredients, cooking over medium heat and stirring almost constantly  with whisk until bubbly, thick, and smooth.

 

[sierrra]

Wow, hearing about the weight loss on the gluten free diet has me scratching my head. I get plenty of carbs, mainly in the form of rice: in the whole form, but also in crackers, pastas, waffles, etc. I also eat more nuts that I ever have–thank goodness there's  Trader Joe's near me. I do spend a good deal of time on food-related pursuits–finding recipes, shopping in specialty stores, cooking. (With a grown child I have the time to do that. )

Sierra

[Christina V]

Sierra,

Hi, I have to agree with Lynnie.  I only started this gluten free dairy free restricted sulphites etc diet on 2.6.09 I can't beleive it but it is just 5 days and I can see my ankles again and I can actually see and feel the knobs of my knees.  The pain has not subsided yet, but it is such early days and things can only get better.

So keep on in your pursuit of the right diet for you and the “world will be your oyster” health wise at least!!

Thanks for sharing your positive experience.

Best to you and yours

Christina V

[Trudi]

[user=1037]sierrra[/user] wrote:

The longer I've been off the troublesome foods, the more clearly I can see the ill effect if I ingest some. It was not clear in the beginning.

Hi Sierra–

How long have you been on your diet?  When did you start to feel better on it?

Thanks,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[sierrra]

Hi Trudi,

I have trouble with “when” questions–I really should keep a health notebook; I'm a poor historian! The change in my diet began about 3 years ago. I saw a naturopath and he had me go on an elimination diet and write down everything I ate for 6 weeks. At that time, I was only aware of dairy products causing a lot of congestion (and sinus infections). I was more sensitive after that, but would occasionally talk myself into ideas like “I can handle a small amount of dairy.” And I struggled and struggled and struggled to get my diet to where it is today. Food is a tough one! I'm not sure how long it took me to feel better on the diet because I started the minocycline around that time. What I was really aware of is feeling WORSE when I would eat certain foods. That happened soon after the elimination diet ended, and continues to this day.

Sierra

[Trudi]

Hi Sierra–

Thanks for the explanation.  I'm only two weeks in, so have some time to go before seeing results :).

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Lizz]

Lynnie, thanks, I just saw your reply. I'll look into it . I'll try for a few weeks. By the way, does anybody know, if your allergic to dairy, is it safe to substitute goat milk instead?

[Tiff]

[user=1037]sierrra[/user] wrote:

Wow, hearing about the weight loss on the gluten free diet has me scratching my head. I get plenty of carbs, mainly in the form of rice: in the whole form, but also in crackers, pastas, waffles, etc. I also eat more nuts that I ever have–thank goodness there's  Trader Joe's near me. I do spend a good deal of time on food-related pursuits–finding recipes, shopping in specialty stores, cooking. (With a grown child I have the time to do that. )

Sierra

I understand, Sierra.  It doesn't ring with most people.  In fact, even if there was weight loss, usually people are happy about it.  I'm very unusual in this way.  Way off the average.  I did try to eat a lot of alternative carbs, but we are 150 miles from any health food stores, so the gluten free stuff was tough to find.  I also admit that I hated all of it.  It was like eating cardboard to me.   I probably am very different than most people though, and I just didn't eat it rather than eat something that I found undesirable.  I did not feel terribly hungry, but I dreamt about food all night.

Avoiding the gluten may not have been helpful though.  When I finally got blood allergy testing, gluten was not registering as sensitive, but rice was, so, see, I might have been making things worse.  Those tests confused me even more!

In the end I could find few foods that did not represent some risk from some angle.  Gluten, rice, soy, dairy, sugar.  Plus add in other worries such as MSG, nightshades, citrus and salicylates, meats.  On and on.  Nothing looked good to me anymore, nor did it give me a positive feeling of good health, just fear.

About the only thing I have been able to do is follow something along the lines of The Maker's Diet – whole foods.  I wager that most of my calorie intake comes from the smoothie I have each day with raw goat milk yogurt and organic berries with coconut milk.  I then eat a dinner with some kind of grilled or roasted meat (very small portion) and grilled, stir fried, or steamed veggies with a small portion of rice, pasta, or homemade whole wheat bread.  Then I feel complete.  No food dreams all night.  And I also do spend quite a bit of time and energy on food recipes and planning.  We learned to make homemade bread with wheat we grind (it is so yummy that I can't believe what we were missing), and sauerkraut (you will never want to buy it from the store again).  Those are the successes, but time and energy sometimes fail us.

I don't think of it as curative to my RA.  I only think of it as a balanced diet that hopefully will not contribute to heart disease, cancer, or diabetes on top of the RA.  My labs all indicate that that is true at this point.  It is the same as stopping smoking or other habits.  They would not cure RA, but they would make you feel better and be healthier in general.

Recently I have gotten even more lazy and sometimes eat ice cream and other sweets.  What has been the result?  Nothing noticable to me, but I have gained a few much needed pounds.

So, I am posting this as just another viewpoint for anyone lurking.  I think it would be wise to try to find dietary problems.  For most people pain is an excellent motivator, and the very least they will do is drop a few pounds which is bound to help their health and make them feel better, so what is to lose in trying?  And for some people it appears that these issues are key factors causing pain and inflammation.  But if there are others out there like me, then I want them to know they are not alone.

I've watched these boards for a couple of years now, and there have been quite a few people who have been successful on AP without major dietary changes, too, so that is encouraging.  It is not a basic idea in Dr. Brown's approach, but it is definitely something to work on.

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