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Inflammation... what's left to look for?


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#1 amo_mea_filiis.

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Posted 13 August 2017 - 08:15 AM

***Update here and down below.

Dd saw the rheumatologist. While nothing in his area jumped out, he's not able to formally rule out yet because she was on steroids. He ran labs, and will run them again in 4 weeks. He wanted to see what her labs looked like on and off steroids.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This is the same kiddo from the depression thread.

Not too sure of my point here, just looking for ideas I guess.

Dd was on steroids and antibiotics for 10 days for a sinus infection. (Post meds, she's still stuffy and her ears still have fluid; very unusual for her. Doc is trying to get her in with allergist sooner.)

While on those meds, labs were run for psych med levels, and I asked to include vitamin D (I always ask to throw it on most labs because of location).

Lithium level was fine.

Her TSH was 7, so psych agreed with weaning off lithium, even if the steroids played a role.

Her D was 11 :( . We're now doing about 70k a week, will recheck in a few weeks, and adjust dose. We'd do 50k a week, but no medical professionals are worried about the extra 20k, and it's easier to remember giving daily vs skipping 2 days.

Within 48 hours of stopping the steroids, her joint pain was very obvious, and her knees were a little swollen. Off to the regular doc again. (This isn't new, but was never this obvious!)

Doc ordered ANA, rheumatoid, lupus, basic labs, lyme, and some other tick stuff. So far, most everything has been negative/normal except for whatever shows inflammation, which was expected. We are still waiting for the non Lyme tick panel. If this panel is negative, doc wants to send her to a rheumatologist (we've got allergy, sleep, neurologist, and neuropsychologist scheduled already for various reasons).

We're also doing an elimination diet (top 8, using Whole30 minus fish). We've done it in the past, but not well (ds has always been bad with food), and symptoms were vague which is not easy to track.

In the past dd has had a mix of positive and negative gluten antibody results. Because of a positive, her doc will throw it in when GI stuff flares. Why haven't we eliminated? It's hard to without an absolute yes, and when it doesn't cure vague stuff. We are now cutting it, not sure if it'll be reintroduced. GI ran it, and she was negative.

A lot of dd's vague pain is usually caused by constipation. Even what sometimes seems like period cramps or chest pains! But, what teen wants to live on miralax?! So the cycle is pain to the point of terrified anxiety, confirmation of poo, mega cleanout dose, maintenance dose for a few weeks, then refusals, several months later it starts again.

Oh, 3 nights ago, dd said she thinks the allergy eye drops and nasal spray might be causing some reaction. We stopped, and she says she's ok.

Now I'm all over the place without a point!

Is it possible for environmental allergies to cause joint pain and swelling? What about a food intolerance?

She's overweight, but not obese (she can swim laps, so she's not terribly out of shape). She's bloated. Joint pain. Some joint swelling. Low D. Chronic constipation (I've always thrown this under the common-in-autism umbrella). Possible sleep apnea (also blamed autism for poor sleep). Was having tendinitis in the wrists. PMDD. Asthma. Allergies (only known is dust, for which she carries an epi!).

Add in the psych stuff. Some has always been there, like the anxiety. But some, like the scary stuff possibly looking like bipolar, are new-ish.

What else would a rheumatologist be looking for?

I know dd could have a different diagnosis for everything, and have stand alone psych difficulties. But I'm not going to pretend that I'm not hoping for something like gluten intolerance with psychiatric symptoms and sleep apnea. She's not going to be scoped for celiac because the local GI wants classic symptoms (weight loss, pain after eating, etc).

I was diagnosed with sleep apnea prior to gaining weight. My father snores. My mother was just diagnosed, but is quite large. So we have a family history. Dd has weird dreams similar to mine when I fall asleep without cpap, which is why we're going for a study, even though her fatigue can be from the depression alone. She doesn't tolerate SSRIs.

Her D in February was 40, and she was quite depressed and fatigued. In January her anxiety was off the charts. In April, the psych stuff took primary focus for everyone's safety. In a few weeks, she'll have a combination of family based therapy, dialectical behavior therapy, applied behavior analysis, and behavioral activation (we have some going now, but the combination starts next month. In-home providers are being DBT/ABA/BA trained for overlap).

Am I missing a rock to look under?

I know to keep a binder so each doc can see what other docs say. I'm hoping for communication, but not holding my breath.

Edited by amo_mea_filiis., 01 September 2017 - 06:40 AM.


#2 amo_mea_filiis.

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Posted 13 August 2017 - 08:36 AM

We had started keto-ish (under doc's approval), but dd's dairy issues made a comeback (happens when she's sick), and I wasn't prepared for dairy free keto. That's when doc said elim. diet and we switch Tuesday morning.

#3 eagleynne

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Posted 13 August 2017 - 09:25 AM

My mom had joint pain and swelling along with constipation and bloating when her gluten sensitivity first flared up. Sleep apnea would explain the snoring and tiredness and could contribute to depression. A Whole30 would probably be a good place to start with diet.

#4 wapiti

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Posted 13 August 2017 - 10:10 AM

I would want a few more labs if they haven't already been done, starting with the immune system (IgG total and subclasses, IgM, IgE, IgA, maybe C1 and C4) and more pathogens (HSV, EBV, CMV, and in this case definitely ASO and Anti-DNase B, as strep is known to like joints).

 

Note that steroids can affect bloodwork for some things.  Bloodwork that looks at immune system response to detect a pathogen may be inaccurate if taken while on steroids because steroids depress that response.

 

A study for you:  Improvement of psychiatric symptoms in youth following resolution of sinusitis.

 

See if you can find a sinus specialist (usually an ENT who extra-specializes in sinus stuff).  I would not assume the remaining sinus stuff is necessarily allergy, as opposed to remaining infection.

 

For example, my guy has been on loads of oral antibiotics, and doesn't even have much in the way of sinus symptoms beyond mild postnasal drip, and yet a sinus CT showed some infection hanging out up in the sinuses, where nasal sprays and oral antibiotics often won't reach.  He's now on sinus rinse with a gel antibiotic added, though I'm not seeing any difference - we'll see what ENT says....  I do know someone whose child's neuropsychiatric symptoms improved dramatically after sinus surgery to clean out infection.

 

Sometimes low vitamin D may be a result/symptom rather than a cause.  I would be careful there - if the supplementation makes any symptoms worse, I'd try pulling back to see if that helps.  I've also read that supplementing D can further exhaust magnesium supplies in order to process that.

 

And the gut involvement - harder to manage than one might think.  Good luck!


Edited by wapiti, 13 August 2017 - 10:20 AM.

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#5 Shelly in IL

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Posted 13 August 2017 - 10:12 AM

You might want to joint the Magnesium Advocacy Group on fb. There are some amazing people there who have great answers.
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#6 6wildhorses

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Posted 13 August 2017 - 10:37 AM

A few years ago, I had a lot of serious mental health issues and symptoms of inflammation. I cut dairy, sugar, caffeine, gluten, and meat from my diet. I am a new person. Whenever I cheat and have more than a few grams of sugar or more than a bite of dark chocolate, I pay for it, both physically and mentally. It's a tough diet to maintain, but I just remind myself of how terrible I felt until I went on this diet. I also take supplements to help my inflammation, such as astaxanthin, bilberry, and curcumin. I also have adrenal fatigue, and I take Dr. Christopher's formula for that.

You might want to look up the Medical Medium books by Anthony William. He talks a lot about healing ourselves with food. He posts a lot of advice on his Facebook page too.

Edited by 6wildhorses, 13 August 2017 - 11:21 AM.

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#7 6wildhorses

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Posted 13 August 2017 - 10:42 AM

Also, probiotics are really good for stomach issues, especially after antibiotics. I use Garden of Life probiotics. My favorite supplement for sinus issues is Kick Ass Sinus.

Also, when I said I avoid sugar, and don't avoid natural sugar in fruit. Fruit has a lot of healing properties.

#8 aaplank

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Posted 13 August 2017 - 10:56 AM

The Autoimmune Protocol might be helpful, especially for inflammation.

https://www.thepaleo...mmune-protocol/

http://autoimmunewellness.com/

#9 amo_mea_filiis.

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Posted 13 August 2017 - 11:51 AM

I was considering W30's autoimmune list, but wanted to start basic.

She does also take a magnesium, calcium, zinc supplement. Recommended with the D after the labs.

That study is interesting. Her allergies and sinus symptoms are what land her at the dr most often.

Dr is considering pans/pandas, but we didn't see any changes on the round of antibiotics.

Doing W30 as opposed to eliminating just top 8 will also cut the sugar and stuff.

I will watch for any issues as the D comes up, and lithium comes down.

I'm guessing allergist and rheumatologist will be doing a lot of other labs, so I'll make sure we get all covered.

Thanks for all the info!

#10 mom2samlibby

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Posted 13 August 2017 - 03:19 PM

You might want to joint the Magnesium Advocacy Group on fb. There are some amazing people there who have great answers.

 

I'd be kind of careful on this group.  I've been following it for a week and some of their answers seem kind of odd to me from what I've read about different deficiencies (Vit D, Vit B12).  

 

Are you giving her K2 with the Vitamin D3?  Those two need to go together in order to absorb the D.  http://www.lindsayru...hout-vitamin-k2  She also needs to be on magnesium. This one is easy to help get magnesium into your body.   https://www.amazon.c...WJJVMQQG1Q1T99G

 

Look up magnesium deficiency.  This website has some good information on it about Vitamin D and magnesium deficiency.  http://www.easy-immu...deficiency.html

 

Have you tested her B12, iron, and folate levels?  Those may be low also if she is that low in D. 

 

As her body is starting to get more D in it, her bones may hurt.  This is why:

 

More problematic side effects of vitamin d are bone pain, muscle pain or generalized pain soon after starting to take vitamin d. Those that experience increasing pain become fearful and think that they should stop taking it. But stopping therapy is NOT recommended in the case of increasing pain. In fact, it is likely that you are EXTREMELY vitamin d deficient and have developed bone demineralization from being vitamin d deficient for a very long time and actually need vitamin d more so than the 'average' person.

Read more: http://www.side-effe...l#ixzz4pfVjO75V

 

Hopefully you get her on the right track soon.  


Edited by mom2samlibby, 13 August 2017 - 03:49 PM.


#11 idnib

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Posted 13 August 2017 - 03:28 PM

Agree on making sure she's getting enough K2.

 

Is she getting enough good fats? Many Americans have a 6:3 ratio that's too high and causes inflammation. Is she getting enough olive oil/fish/grassfed butter? Chicken is also fairly high in Omega 6. Here are some ratios for common foods.



#12 amo_mea_filiis.

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Posted 13 August 2017 - 08:08 PM

We eat chicken a few times a week. I use a lot of olive and coconut oil, and she loves avocado. No grassfed butter because of cost, but I don't use butter too often.
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#13 Ellie

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Posted 13 August 2017 - 08:13 PM

Her TSH was **7**? Oh my goodness. That's way too high. Did the doctor also order Free T3 and Free T4? FTR, hypothyroidism can cause depression, joint pain, and more.

 

As far as inflammation, have you seen the Autoimmune Protocol? It's first an elimination diet--no dairy, grains, seeds/nuts, nightshades, eggs, some other stuff I cannot remember at the moment. :-) It's more comprehensive than W30. On the Hashimoto's 411 FB group, it's strongly recommended, and many people have been helped by following it.


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#14 amo_mea_filiis.

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Posted 13 August 2017 - 08:20 PM

Her T's were good. I'm hoping this jump was from the lithium and steroid, and NOT because of thyroid disease. Those levels will be checked again possibly when we recheck D.

#15 amo_mea_filiis.

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Posted 13 August 2017 - 08:23 PM

We might end up following autoimmune protocol, but I have to take food slower. I can't afford for us to be eating differently, so W30 to start. :)
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#16 mom2samlibby

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Posted 13 August 2017 - 08:30 PM

I'd also look at the side effects of miralax.  That could be causing some of her issues.  http://embracingimpe...ers-of-miralax/



#17 tdbates78

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Posted 13 August 2017 - 08:31 PM

Since she has constipation, any chance she's been tested for SIBO (small intestine bacteria overgrowth)? I have lifelong constipation and after antibiotics for a double ear infection diminished my good gut flora I ended up with SIBO. All the sudden I was bloated all time time, achy, joint pain, fatigue, peripheral neuropathy, food sensitivities and many vit deficiencies among other things. I've been tested for lyme, celiac, RA, AS, MS, Lupus and I dont even remember what else. Everything came back negative except for the SIBO test. The symptoms effect my entire body.

https://draxe.com/sibo-symptoms/

Good luck! Not knowing the answers is extremely frustrating.

Edited by tdbates78, 13 August 2017 - 08:33 PM.


#18 Greta

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Posted 13 August 2017 - 08:40 PM

Has her serum B-12 been tested? It sounds like she's had digestive issues, and that would make it likely that she would have trouble absorbing it. And a deficiency can cause all kinds of problems, including neurological and psychological.

With her D that low I'm surprised they didn't give her a prescription strength supplement. That worked wonders for me. I've read that, oddly enough, the body absorbs more from one weekly megadose than it does from smaller daily doses. So I bought D drops, and I take one big weekly dose with a higher-fat meal, or even with a spoonful of olive oil. And I take magnesium and vitamin K every day because those (I've read) help you absorb it.

#19 amo_mea_filiis.

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Posted 13 August 2017 - 08:52 PM

I don't know if B's have ever been checked.

They could have prescribed D, but I already have 10,000iu D3 gel caps that I take. So she's getting that daily. I could give her 5-7 once a week, but I read that D can be taken daily, weekly, or even monthly. Daily is easiest to remember.

#20 aaplank

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Posted 13 August 2017 - 10:25 PM

We might end up following autoimmune protocol, but I have to take food slower. I can't afford for us to be eating differently, so W30 to start. :)


I don't mean to beat a dead horse, but I don't think you would spend more money than Whole 30. I find that it's actually more affordable.

#21 Ellie

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Posted 13 August 2017 - 11:00 PM

Her T's were good. I'm hoping this jump was from the lithium and steroid, and NOT because of thyroid disease. Those levels will be checked again possibly when we recheck D.

 

But were those *Free* Ts? Because Total T3 and others can be tested, but only the Frees matter. Free T3 should be in the upper fourth of your lab's ranges. Free T4 should be in the upper half. None of the other Ts matter.



#22 Greta

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Posted 13 August 2017 - 11:13 PM

I don't know if B's have ever been checked.

They could have prescribed D, but I already have 10,000iu D3 gel caps that I take. So she's getting that daily. I could give her 5-7 once a week, but I read that D can be taken daily, weekly, or even monthly. Daily is easiest to remember.


Oh, yes, absolutely do what works for you guys! I only thought I'd mention it because my deficiency symptoms came back when I was using daily gel caps. I think the weekly drops are working a little better for me. But maybe I'm just weird. :)

#23 amo_mea_filiis.

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Posted 14 August 2017 - 04:07 AM

I don't mean to beat a dead horse, but I don't think you would spend more money than Whole 30. I find that it's actually more affordable.


I looked up the autoimmune shopping list and it's not much different. I know I'll need potatoes and tomatoes to keep ds happy, but not sure if dd would be ok avoiding. I'll talk to her. She adores potatoes.

#24 amo_mea_filiis.

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Posted 14 August 2017 - 04:08 AM

But were those *Free* Ts? Because Total T3 and others can be tested, but only the Frees matter. Free T3 should be in the upper fourth of your lab's ranges. Free T4 should be in the upper half. None of the other Ts matter.


I don't remember what was on the lab slip.

Total is usually what's ordered, right? That's probably what it was.

I'll talk to her doc about the rest at the recheck.

#25 MamaBearTeacher

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Posted 14 August 2017 - 05:15 AM

Since she has constipation, any chance she's been tested for SIBO (small intestine bacteria overgrowth)? I have lifelong constipation and after antibiotics for a double ear infection diminished my good gut flora I ended up with SIBO. All the sudden I was bloated all time time, achy, joint pain, fatigue, peripheral neuropathy, food sensitivities and many vit deficiencies among other things. I've been tested for lyme, celiac, RA, AS, MS, Lupus and I dont even remember what else. Everything came back negative except for the SIBO test. The symptoms effect my entire body.

https://draxe.com/sibo-symptoms/


What test did you use for SIBO?

Good luck! Not knowing the answers is extremely frustrating.



#26 transientChris

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Posted 14 August 2017 - 05:57 AM

First of all, the lab tests that were run- RF factor and ANA, are not definitive for either lupus or RA. Her ANA could have been down if she was on steroids. About 30% of RA patients, including me, are RF-. I got my diseases at around 23 and didn't get diagnosed until I was 31 with my first disease with my first and not until 37 with hints of second and not until 50 did the current rheumatologist figure out I had three (RA.lupus.amd Sjogren's). A good rheumatologist should be a great asset to figuring what it might be in the autoimmume spectre.

As to inflammation and help with joint pain, is she on NSAIDS like aspirin, ibuprofen, naproxen? They help with that. Also turmeric does too. I can't take NSAIDS so take 500 mg. of Nutrigold Turmeric Curcumin Gold with a black pepper extract at 2.5 mg twice a day. (I went to Consumer Lab and it was the best rated for bioavailability and I buy at Amazon for a fairly good price). In terms of magnesium which would help with constipation and any muscle ache, I take magnesium citrate 400 mg. twice a day.
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#27 amo_mea_filiis.

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Posted 14 August 2017 - 07:03 AM

First of all, the lab tests that were run- RF factor and ANA, are not definitive for either lupus or RA. Her ANA could have been down if she was on steroids. About 30% of RA patients, including me, are RF-. I got my diseases at around 23 and didn't get diagnosed until I was 31 with my first disease with my first and not until 37 with hints of second and not until 50 did the current rheumatologist figure out I had three (RA.lupus.amd Sjogren's). A good rheumatologist should be a great asset to figuring what it might be in the autoimmume spectre.

As to inflammation and help with joint pain, is she on NSAIDS like aspirin, ibuprofen, naproxen? They help with that. Also turmeric does too. I can't take NSAIDS so take 500 mg. of Nutrigold Turmeric Curcumin Gold with a black pepper extract at 2.5 mg twice a day. (I went to Consumer Lab and it was the best rated for bioavailability and I buy at Amazon for a fairly good price). In terms of magnesium which would help with constipation and any muscle ache, I take magnesium citrate 400 mg. twice a day.


I guess I knew this, just wanted to keep my head in the sand!

I was told no NSAIDS on lithium, which is another reason we're weaning (too many med issues, with too little benefit).

400 mag daily. Since it's a mag, cal, zinc combo, I wouldn't increase unless doc or pharmacist gave the go. (Not that you told me to increase! Just mentioning what she's on right now)

#28 amo_mea_filiis.

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Posted 14 August 2017 - 07:13 AM

Just realized she does a little more magnesium.

Years ago I got supplements for ds. They did improve behavior, but not enough for the cost or the work to get the stuff in him!

Anyway, one of them was a cream (not sure the texture can be called cream, but whatever) with magnesium. He couldn't tolerate the texture on his back, so it went to dd. She uses a little on her legs I think.

Hmm, maybe I should get more because she loves it.

#29 ClemsonDana

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Posted 14 August 2017 - 08:55 AM

It sounds like your daughter has a lot going on, but I thought I'd chime in that even 'regular' seasonal, mold, and pet allergies can cause aches all over. I started with an allergist with plans to follow up with other specialists, but once my allergies were under control a whole host of symptoms went away (aches, vertigo, heart palpitations, sleeplessness). Cherries/cherry supplements can also help with inflammation. My whole family is 'blessed' with autoimmune issues, either shot-worthy allergies, arthritis, or both. We rarely get sick, but we often feel sick-ish.

#30 Ellie

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Posted 14 August 2017 - 12:52 PM

I don't remember what was on the lab slip.

Total is usually what's ordered, right? That's probably what it was.

I'll talk to her doc about the rest at the recheck.

 

Yes, for some reason, doctors who don't know better will order total, but it is a useless number. You have to insist on the Frees. They are the amount of T3 and T4 available in the blood that the body can actually use.



#31 amo_mea_filiis.

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Posted 14 August 2017 - 02:32 PM

All tick results came back and were negative. So off to rheumatology we go I guess.

We start Whole30 in the morning.

#32 amo_mea_filiis.

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Posted 01 September 2017 - 06:40 AM

Dd saw the rheumatologist. While nothing in his area jumped out, he's not able to formally rule out yet because she was on steroids. He ran labs, and will run them again in 4 weeks. He wanted to see what her labs looked like on and off steroids

#33 Katy

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Posted 01 September 2017 - 07:24 AM

Wow, she sounds like a more extreme version of me, substituting lung problems for joint problems.  The biggest difference for me has been in getting rid of things I'm allergic to (wheat), and switching to a low histamine diet.  The short version of low histamine is:  eat less meat, cheese, and other aged proteins.  Avoid things that are fermented like sauerkraut, wine, vinegar or anything potentially moldy. Eat more green vegetables.  Eat more frozen fruits & veggies so that they are at optimum ripeness rather than potentially overripe.  For more information, you can check out https://healinghistamine.com/. The author pushes her books a lot, but if you ignore that there's a ton of free and encouraging information on the website.  She's also pretty good about not giving you a confusing list of foods to avoid, just speaking of how to make them a healthy part of your diet.  For example, many natural foods that are high in histamine are also high in compounds that help you break down histamine (ETA: like tomatoes).  Others that cause cross reactions (bananas can trigger those with ragweed allergies) are very healthy, and may be tolerated in small doses (1-2 bananas a week) if the person is otherwise on a low histamine diet.

 

This looks like:  I choose the freshest meats I can then cook and freeze immediately. If I buy chicken, I cook it the same day I bring it home. Then I portion and freeze it rather than eat it as leftovers.  When I want chicken, I choose a bag of precooked chicken from the freezer and heat it up in the microwave. I add vegetables, potatoes or sweet potatoes, and any sort of gluten free starch I want.  If I'm being very organized I cook some of it in advance already seasoned for specific meals I plan that week (cilantro, chili, and cumin for fajitas; soy, garlic, and ginger for stir fries, etc)  Then I just have to add rice, appropriate veggies, and sides like corn tortillas.  When I have no time for that I just cook in a bit of salt, pepper, and onion powder and add whatever seasons I want when I'm preparing a specific meal.

 

This isn't inexpensive, but I might also look at ordering a test from 23andme and uploading the results to a few websites that analyze the methylation pathway such as http://geneticgenie.org/. That way you can figure out if the inflammation is coming from that pathway.  It's possible adding a few inexpensive supplements (like yucca, magnesium, and zinc) and a few expensive methylated b vitamins will fix almost all her problems.  In a cheaper way, making sure she eats at least a cup of beans per day should fill her with plenty of natural folate.

 

In another controversial move, my thyroid numbers went to ideal after I tried taking Iodoral iodine supplements rather than thyroid medicine.  Take a good look at her diet. Is she getting enough iodine?  Has she been avoiding dietary sources?  Do you use iodized salt or sea salt?  Does she eat foods that block iodine absorption like soy and lots of cruciferous vegetables?  With some people Iodine can make thyroid numbers worse, but with some it fixes the entire cycle.  If you change over, start by adding iodine to the thyroid meds, and ask for thyroid retests once a month.  As it comes back to normal, then reduce thyroid meds and see how she does.

 

The big thing is, try maybe one change at a time. If you try multiple things at a time you'll never know if one thing is making her better and one thing is making her worse.   To me the first thing I would do is an elimination diet.  Maybe start with rice and some veggies like peas and add back beans, potatoes, and more veggies (edging towards starch-based McDougall), then slowly adding in other things and see how she does.  If you limit oils during this time and only use 1-2 servings per day of natural fats (raw seeds and nuts, avocado, flax, etc) you'll also be pushing her diet towards anti-inflammatory in the fats which may also help a lot.

 

Feel free to message me for more personal advice.


Edited by Katy, 01 September 2017 - 07:25 AM.


#34 Acadie

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Posted 01 September 2017 - 09:31 AM

What kind of magnesium? Certain forms can really help with constipation. I'd probably give mag separately from the other supplements, in a form that loosens stool, so you have that on board to help the GI issues. We take it morning and evening with meals.

 

Low histamine or low oxalate diets can both reduce inflammation and anxiety. We need to do both here, but you could try to figure out if one or the other helps. Have you noticed if chocolate is an issue? High histamine and very high oxalate.

 

Amy



#35 amo_mea_filiis.

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Posted 01 September 2017 - 09:50 AM

Chocolate might be an issue, but she would NEVER admit it! Lol

#36 amo_mea_filiis.

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Posted 01 September 2017 - 09:52 AM

The magnesium/calcium/zinc combo I got for me when I started keto. After her D came back low, I just started her on D and the mag combo. When I get more supplements, I'll get her separate mag.
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