Need advice - losing too much weight page 2

[devotchka]

You need to find out what's behind the constant fatigue and digestion issues as it could be something really serious. If you're not eating gluten then it isn't celiac. It could be anything from Chrohn's to h.pylori so you really need to go back to your Doctor. If he still doesn't take you seriously or investigate further then find yourself another Doctor.

Agreed, but that's much easier said than done. I've tried for years to figure out the cause behind those symptoms, but so far I'm left playing my own detective and not getting very far. unfortunately fatigue and digestion issues are symptoms of pretty much a million different things. I've been to a number of different Drs, they've done a bunch of tests and they're always 'normal'.

I just got back from a follow-up with a new doctor yesterday (I've only been seeing him a couple months now). He did some blood work, but like usual says everything appears to be 'normal'. looking at the labs myself, I'm not thrilled with vitamin D at 39, or ferritin at 27. as for thyroid, he only ran FT4 and it's within the normal range. He probably didn't run more because I've had it my thyroid tested from the last Dr. within the last couple years, and it always shows within the normal range. I know there are more extensive tests to run, but all of the doctors Ive had are unwilling to do more unless the first set looks abnormal.

as for the celiac possibility, I find it impossible to come to any firm conclusion. I know that gluten gives me bloat. that alone is enough to avoid it because it means of the very least I am gluten sensitive (that still can do lots of bad things to your body). My previous doctor did some of the blood work, but again only a couple of the tests, not all of them. getting diagnosed for celiac is one of the hardest conditions to accurately diagnose because American doctors tend to know very little about it and celiac manifests itself in many many different ways -not just digestive.

The thing that really throws me for a loop about my blood work is my ferritin is low/normal but my iron is very high. I've never had my iron be this high before and at 209 it's actually outside of the normal range (normal is 40 -160). frustratingly he thought this was okay for now. he didn't think much about the fact that I had a bout of strange persistent vertigo for two weeks last month. And he only recommends seeing a nutritionist to make sure I'm eating okay ( he did not seem very familiar with paleo/primal at all). now I have to do more of my own detective work to find out if that high iron number is actually okay and how to get my ferritin up without making the iron higher.

surprisingly the doctor says the blood work shows that I probably don't have malabsorption issues, and the markers for systemic inflammation were good. I was sure all the bathroom issues would mean that I wasn't getting anything from my food. Along with that and the constant pain I'm in I figured I had inflammation issues too... But apparently not? It should be good news.. but it just leaves me more confused really.

I doubt I will ever find out what causes my fatigue/digestive issues.. And now I am tasked to finding a nutritionist who is actually familiar with primal/paleo. I'm guessing this won't be easy

[devotchka]

I've noticed people often assume they are eating more than they actually are when they can't seem to gain.. Cutting out sugars, grains, pastas, etc will eliminate that constant need to be fed & you will be satiated more now.. That often works against people like me & you bc we need the calories.. I'm similar to you, fat burner, calorie burner, hard gainer, thin, All those adjectives! BUT, you NEED calories (assuming there is no underlying thyroid or dysfunctional gland activity) if you're stuffing 3k calories a day in your body (clean primal food) you will gain weight

When I first began my primal journey, my body dumped tons of water, inflammation, unraveled digestion congestion & leaky gut-ness from YEARS of damage & torture created by my SAD (& grain heavy bodybuilding diet).. After these eliminations took place, my body calmed, healed & began repair & rebuild.. I too was shocked @ how thin I got & panicked, but it all makes sense now..

I still think we need calories.. I sneak them in with some dairy bc frankly living off ribeye & New York strip gets expensive.. So I elect for some dairy to boost calories.. Avocados, eggs, almonds, heavy oils on salads, yogurt, cheeses, meats are all staples.. You just gotta eat more of that stuff..

I would suggest taking it easy on the cardio.. Burning calories will only chew up your caloric energy, you're looking for calorie surplus..

Nap more if you can.. I also thought the fasting improved digestion & "heal to gain" for me as well (as mentioned above)..

General theme is: more calories, less burning

Also, if you're battling diahrea type stuff, watch the "add more carbs" suggestions.. IBS-D may be more your "type" condition, & more carbs like potato, fruit &/or general primal starches may run through you, as they do me.. My body prefers boosting the fat numbers for gains

Good luck!

oh & stress will make it worse! (this is where the naps help) ha, I know it's tough, but "Don't Worry, Eat Happy" maybe is your new theme

Good overall advice, thanks. I'm hoping it IS simply a matter of eating more. It's just so hard to figure anything out when I have so many health variables going on.
I seriously feel like I have been eating as much as I can. calories from fat for the days I calculated was around 50%, so if I don't have a fat consumption issue. The rest of what I've been eating is a variety of good solid paleo fare. figuring out what to try to add in is tricky, because you're right -starches and fruits easily trigger IBS-D tendencies, as well as nuts (especially my regretful 'almond flour' baking experiments), and chocolate (even dark).
For now I guess my game plan is to keep my selections mostly the same, try adding some sweet potato, or heaven forbid white rice (because I know it's usually safe) and otherwise just try to eat... more. Somehow...
I've always been an all day eater, getting in three main meals with constant grazing in between. But maybe I can work on making my main meals a little bigger.. we shall see.

[jendoe]

Oh wow - I'm sorry you're going through this. Medical stuff can be so stressful, especially when eating right doesn't seem to fix it, and the doctors don't know what's wrong with you.

A couple of thoughts:

1. Since you mentioned that fruits and simple carbs give you digestive problems, have you researched "fodmaps"? I only ran across this within the last few days, someone mentioned them here, and I had to go look it up on wikipedia. I don't know if it'll be helpful to you, but if you haven't heard of them yet - might be another avenue to research.

2. You probably are aware, but just in case... you know that you can get alot of lab tests done yourself, by going through one of the "direct labs" type places, right? (I've actually used the one I linked to, "Direct Labs" - they were fine, and they usually have monthly specials on various tests).

You mentioned that you're worried it might be thyroid related, and your doctors won't do the more detailed testing... you could easily get this done through one of these places. My guess is, you won't be able to get insurance to cover it, but you can get reimbursed by your FSA/HSA if you have one (if my memory is right.)

3. You might want to check out Chris Kresser. He's a paleo-oriented naturopath who does long-distance consults, and seems to be good at helping with complex issues that are tough to solve. Worth a try, anyway... he has a bunch of podcasts up at his site, so you can listen to those to get a sense of how he thinks before you call.

If you do call him up, I'd love to hear back from you about how it goes! I've thought about calling him, but I am not at the point that you are (of having strictly followed a good primal/paleo diet for long enough to know that the issue is persisting).

I wish I had better advice for you, but hopefully those ideas lead to something...

Good luck!

[cori93437]

I just got back from a follow-up with a new doctor yesterday (I've only been seeing him a couple months now). He did some blood work, but like usual says everything appears to be 'normal'. looking at the labs myself, I'm not thrilled with vitamin D at 39, or ferritin at 27. as for thyroid, he only ran FT4 and it's within the normal range. He probably didn't run more because I've had it my thyroid tested from the last Dr. within the last couple years, and it always shows within the normal range. I know there are more extensive tests to run, but all of the doctors Ive had are unwilling to do more unless the first set looks abnormal.

as for the celiac possibility, I find it impossible to come to any firm conclusion. I know that gluten gives me bloat. that alone is enough to avoid it because it means of the very least I am gluten sensitive (that still can do lots of bad things to your body). My previous doctor did some of the blood work, but again only a couple of the tests, not all of them. getting diagnosed for celiac is one of the hardest conditions to accurately diagnose because American doctors tend to know very little about it and celiac manifests itself in many many different ways -not just digestive.

The thing that really throws me for a loop about my blood work is my ferritin is low/normal but my iron is very high. I've never had my iron be this high before and at 209 it's actually outside of the normal range (normal is 40 -160). frustratingly he thought this was okay for now. he didn't think much about the fact that I had a bout of strange persistent vertigo for two weeks last month. And he only recommends seeing a nutritionist to make sure I'm eating okay ( he did not seem very familiar with paleo/primal at all). now I have to do more of my own detective work to find out if that high iron number is actually okay and how to get my ferritin up without making the iron higher.

surprisingly the doctor says the blood work shows that I probably don't have malabsorption issues, and the markers for systemic inflammation were good. I was sure all the bathroom issues would mean that I wasn't getting anything from my food. Along with that and the constant pain I'm in I figured I had inflammation issues too... But apparently not? It should be good news.. but it just leaves me more confused really.

Despite that Vit D being within 'normal' (30-75) it's to the low end and getting it up may indeed be helpful... most people shoot for about 60-65.

Getting some sub-lingual B-12 might help with your fatigue until you get back on track.

Sorting out the reason would be better...
Being short on Vitamin C can cause it... maybe supplement to see if that helps?

Also... that Celiac's you suspect can cause low ferritin too. (This is where my money would go if I were betting...)

Thyroid issues can cause ferritin issues too bit it came back normal... and with the gut issues you already have, well, it seems to be pointing that direction.

Ferritin is the body's iron storage device, a protein, so you aren't making enough of that... thus are probably not storing iron. That would be a good reason for all of the free floating iron in your system if you are eating a good deal of iron rich foods. Your body simply doesn't have storage space to put it until it can be utilized or disposed of.

Gut healing time. Bone broths... zero grains.
And you need to keep consuming iron believe it or not... if not you never fill the stores you're creating.
Don't and go crazy and over do the iron too much, but don't be afraid to keep eating it either. Because you are not storing any for your body to use when you are not eating, you are totally reliant on the free iron in your blood right now.
And good protein too... building blocks.

[devotchka]

Since you mentioned that fruits and simple carbs give you digestive problems, have you researched "fodmaps"? I only ran across this within the last few days, someone mentioned them here, and I had to go look it up on wikipedia. I don't know if it'll be helpful to you, but if you haven't heard of them yet - might be another avenue to research.

Hi jendoe, I've never heard of FODMAPS before, but upon quick glance this looks worth investigating. the basic concept makes sense in relation to me and would explain why I've had so much trouble pinpointing why I'm still having digestive issues. on one hand this is promising, but on the other hand - holy moly are there a lot of foods I'll have to eliminate in order to test the diet. many of these would break my heart - mushrooms, onions, and garlic... I love them and eat them all the time. Also surprisingly there a bunch of herbs in the do-not-eat list - Fresh & dried ginger, coriander, basil, lemongrass, chili, mint, parsley, marjoram, oregano, thyme, rosemary! .... waaah.

I found a supposedly complete list of the foods here

following this would be a million times harder for me than giving up grains ever was... but desperate times call for desperate measures. I'll have to read up more on this before I embark. le sigh!

You probably are aware, but just in case... you know that you can get alot of lab tests done yourself, by going through one of the "direct labs" type places, right? (I've actually used the one I linked to, "Direct Labs" - they were fine, and they usually have monthly specials on various tests).

I am aware of the self testing lab sites, but participation is not allowed for New York. there are definitely a couple tests I would have purchased.... But it is inexplicably banned for my state. I know of no feasible workarounds.

You might want to check out Chris Kresser. He's a paleo-oriented naturopath who does long-distance consults, and seems to be good at helping with complex issues that are tough to solve. Worth a try, anyway... he has a bunch of podcasts up at his site, so you can listen to those to get a sense of how he thinks before you call.

it looks like he isn't accepting new clients, ( I couldn't really afford it anyway), but thanks for the link. Looks like there's some really good stuff on there. and thanks again for your suggestions, very very helpful

[devotchka]

Despite that Vit D being within 'normal' (30-75) it's to the low end and getting it up may indeed be helpful... most people shoot for about 60-65.

I've been supplementing with D3 for a couple months now (inconsistently tho). It's only 1000 IUs as that was the doctor's recommendation. after reviewing the bloodwork he did not see a reason to recommend higher dose for my low/normal level. This is where I get frustrated with doctors.. Especially this one because he was recommended by a friend of a friend as a 'good one' and I had to wait six months to get an appointment with him. Basically I don't understand how doctors can be so number centric. If someone is chronically fatigued and other tests don't explain why, and their vitamin D is at the low end of the normal range, is it THAT inconceivable that may be the normal range is not the same for everyone? that may be I would function better at a higher level of vitamin D? I guess that line of thinking is just too much to ask for from MDs these days...

And they wonder why so many of us turn to online help and advice for medical problems..

Getting some sub-lingual B-12 might help with your fatigue until you get back on track.

my B12 was in the middle/high range of normal, so I must be getting good amount from my food. Over the years in the past I've tried various B12 supplements ( including sublingual) but never did anything for me.

Being short on Vitamin C can cause it... maybe supplement to see if that helps?

ha, Dr. recommended that one too but not based on any lab numbers, just as a shot in the dark. I kind of ignored it as vitamin C seems ridiculous to be low on. its constantly added to foods and they never test my levels when I get blood work done.. so why supplement? maybe I missed a memo

Also... that Celiac's you suspect can cause low ferritin too. (This is where my money would go if I were betting...)

If it is celiac, I wonder if ferritin lvl will go up if I keep avoiding gluten.

Ferritin is the body's iron storage device, a protein, so you aren't making enough of that... thus are probably not storing iron. That would be a good reason for all of the free floating iron in your system if you are eating a good deal of iron rich foods. Your body simply doesn't have storage space to put it until it can be utilized or disposed of.

iron kind of confuses me. correct me if any of my interpretations are wrong.
my understanding is:
Iron is what's in your bloodstream (so if mine is high, I'm eating a lot of iron rich foods and my body knows it?)
Ferritin is stored iron that your body takes from your bloodstream and makes usable. This is what your body uses for energy
TIBC measures the blood's capacity to bind iron with transferrin.. but I stole that definition from the internet, I don't really understand what it means

I have high Iron, high TIBC, and normal/low ferritin. I googled around and couldn't find exactly what this combination means. Can digestion affect my body's ability to turn the Iron into ferritin?

I was also concerned about hemochromatosis, as it is in my extended family. I was tested a few years ago, and it turns out I have the gene, but they said I don't have the condition. Is this something that I can still develop? from what I've seen online, I need both high ferritin and iron to meet the criteria. Dr. was not concerned (surprise) and said we will keep an eye on it. is the first time I've had iron labs be outside of the normal range.. So I'm not exactly thrilled with his lack of concern or explanations.

Gut healing time. Bone broths... zero grains.

agreed! I even have some bone broth I made right now in the fridge. but I've never really got anywhere before with 'gut healing' as simply avoiding grains and following paleo/primal didn't seem to be the magic trick for me. maybe Jendoe's suggestion of the FODMAPS diet will help. I think I need a 'how to heal your gut without losing more weight or going crazy from even more food restrictions' guide. if you know of any point me in their direction

And you need to keep consuming iron believe it or not... if not you never fill the stores you're creating. Don't and go crazy and over do the iron too much, but don't be afraid to keep eating it either. Because you are not storing any for your body to use when you are not eating, you are totally reliant on the free iron in your blood right now.
And good protein too... building blocks.

okay I was definitely wondering about that. I will keep eating iron rich foods... but I assume supplementation is out? I'm totally confused on how to get my ferritin up without making my iron go even higher.

thanks for the help!

[NZ primal Gwamma]

Devotchka, I so wish I HAD this problem !!!!! With all that Diahorreah, you might be losing too many nutrients. Get some goodies back in - potassium, magnesium, zinc, vit D, omega 3, maybe some B's ???? if your body doesn't need it - it will urinate the excess, I think.
Add some good oils, cream, butter, coconut cream into your food, but don't expect too much too soon. Just like it takes ages to take weight off, it must also apply to putting it on.
Good luck

[magpieoz]

My friend has the same problem, similar make up but older than you. If she doesn't eat paleo pancakes (1 cup almonds, 6 eggs) for breakfast smothered in maple syrup she loses.

I think you need to add some carbs that are not gluten. Try adding in fruits and nuts at the very least. Add some healthy fats and carbs and see if it helps. I wish I had a fraction of your problem, hahaha.

[patsyruss]

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