Had A Revelation- I've Got Malabsorption, My Diet Is Too Restrictive, And I'm Probably Pretty Malnourished!

[littlelymie19]

So lately I've been having some really disturbing symptoms that may or may not be related to my lyme disease. I've become extremely weak, and I've been having chest/left arm/shoulder blade/jaw pain that landed me in the ER, thinking I was having a heart attack. My doctor is having a hard time treating me right now because my body just doesn't seem to be strong enough to fight the bugs (whichever bugs may be irritating my system, that's a whole different question).

That's when it hit me. I think my body is starved of everything that it needs. I have a history of malabsorption, where when I was eating gluten and dairy and all of those fun allergens, I wasn't absorbing any food and my digestive system completely shut down. I could only go to the bathroom a couple times a month. Then as my doctor worked with me on parasites and things, my issues changed to diarrhea. I've alternated back and forth ever since. At my worst, I dropped to 83 pounds at 5'6. I'm now up to 104, but I'm still underweight.

But for the past 3 years, while trying to clean the bugs out of my gut and my body so I can absorb again, I've been following an extremely limited diet. For the past 8 months, I've been eating the same thing every day. My bowels won't move if I don't. My diet is fat free, vegan, gluten free, sugar free and free of other things here and there that have been known to stop me up. I take digestive enzymes, probiotics, and supplements to help, but the issue seems to be bigger than that.

I'm just wondering how many of my symptoms have more to do with lack of nutrients than anything else. It scares me, while I'm having such alarming symptoms, to think that perhaps my diet could be affecting all of the organs in my body. Especially my heart.

I posted this here just so I could perhaps pick some of your brains. I know many of you have experienced issues with regulating your diet, getting the nutrients you need, malabsorption, deficiencies, and all sorts of issues of the sort. I'm just wondering how you all resolved the issue, if you were able to overcome it, and who and what helped.

Thanks so much everyone! Hope you all are well <3

[aikiducky]

My first quick thought is fatty acids, are you supplementing those since our diet is apparently very low fat?

Pauliina

[AndreaB]

I don't know if metals are in with everything else you're dealing with, but you need animal protein to deal with those. Can you eat eggs if you don't want to, or can't, eat meat.

I have an oil mixture I can pm you the proportions of to help get the proper mix of omega 3 / omega 6 as well, if you would like.

[littlelymie19]

Thanks you guys.

I do have heavy metals, but my doctor can't get me to dump them, no matter what he gives me. I do think you're right, it's because I don't have enough protein. I'm on amino acid supplements but I don't know how affective they are.

I am also not on a fatty acid supplement. I haven't been able to tolerate oil in over a year. My only source of fat is 1 cup of unsweetened organic soy milk.

I'm open to any and all suggestions. I wish there was a hospital that would take lyme/celiac/heavy metal patients, just to get them back on their feet! This can be kind of scary.

[Nancym]

Not eating fat is a great way to give yourself gall stones. The bile gets sludgey in the gall bladder and eventually crystallizes.

You're likely to be low on B vitamins of all sorts, vitamin K2 as well as protein.

Hope you get it worked out!

[Rachel--24]

I would agree with Andrea about needing the protein from meat in order to help detoxify the metals. However, if you have elevated ammonia (did you have a urine amino acid analysis?) you would want to limit the protein. Certain problems in the methylation cycle can result in excess ammonia and high protein can make that worse.

Do you tolerate meat or eggs?

[ShayFL]

Seacure. Google it. Sm. amounts of pre-digested protein plus some Omega 3.

Also you can soak almonds overnight and then make almond milk out of them. Pre-digested proteins and fats.

You can soak walnuts too and eat them. They will be soft (not crunchy), but they would give you the much needed Omega 3 oils in a pre-digested form.

Maybe look into Ayurveda to help you figure out what foods might work best for you. Or SCD (specific carbohydrate diet).

[AliB]

Quite a few of us who have had big problems with intolerances and digesting different foods are following the Specific Carbohydrate diet as Shay mentioned. It is having good success.

I too, reiterate the point about you needing the fats. The body and particularly the brain needs plenty of fats and if the gall-bladder isn't used enough it will atrophy and end up having to be removed. Have you been checked to see if you have gall-stones or a blocked bile duct? That could be a reason why you cannot cope with fats.

The gall-bladder needs a good dose of fats regularly as it will then forcibly eject the bile out and take any sludge and stones with it. Low-fat diets are often linked with gall-bladder problems.

I picked up this bit of info on fats and why they are important.

Fats perform many vital roles to aid in the body's functions. Triglycerides, the main form of fat in the body and in foods, constitute most of the stored energy in the body. Triglycerides yield over twice as much energy per gram as carbohydrates and protein (fats provide 9 calories per gram, while carbohydrates and protein provide 4 calories per gram). The free fatty acids, released from triglycerides are the major source for fuel for the body at rest and during light activity.

Triglycerides and other lipids (fat) in foods also carry fat-soluble vitamin A ,D, E and K to the small intestine. In doing so, lipids aid in absorption of these nutrients. Without fat you are at risk for developing deficiencies of these vitamins.

Food fat causes the stomach to empty more slowly than either carbohydrates or protein and it imparts satiety - the satisfied feeling you have after eating. If you reduce your fat intake below 20% of total energy intake, you will get hungry quicker.

The essential fatty acids, omega-3 and omega-6, are substances that need to come from the diet. They are necessary building materials for molecules and compounds that perform such vital functions in your body as regulation of blood pressure, blood clotting, immune response and childbirth.

When my digestion collapsed at the end of January I had the typical stools of fat malabsorption before realising that I was gluten-intolerant, but dropping gluten alone, although it helped, did not sort out my health issues. I then realised that carbs in general were a big problem for me and I was also lactose intolerant so I dropped dairy and most carbs. Then I discovered the SCD a few weeks later and started following that.

Now I can eat a lot more foods - healing has been slow (and I have delayed it somewhat by not sticking to the diet well enough!), and I still have a way to go, but I am getting better. I am now trying to ensure that I get enough fruit and veg as that is very detoxifying - apparently Kale and other raw green veg can absorb a lot of toxins improving waste removal, as well as provide a high amount of nutrients - there is as much calcium in a cup of broccoli as there is in a cup of milk and even more in kale! It is also in a form more absorbable than in milk. I don't enjoy salads in our cold weather but am enjoying green smoothies which are a good, easy and quick way to get the fruit and veg.

It is frightening when your digestion shuts down - many of us have been in a similar situation - where you are frightened to eat anything. The pain in your shoulder may well be an indicator that your heart is under stress. The heart needs many nutrients to function well - you can take supplements but the problem with that is not knowing what the optimum mix would be for your body. The advantage of taking nutrients in the form of fresh fruit and veg is that the body can absorb what it needs from them and as healing starts to take place absorption increases.

Protein in the form of fish will give you Omega 3's and the fruit and veg will also help support the immune system and help get bacteria in the gut like Candida and other rogue strains - often behind a lot of health problems - under control. The SCDiet removes the long-chain carbs that feed the little beasties which is why it works so well.

Any amount of different factors can weaken the immune system - poor diet with lots of carbs and sugar, stress and trauma, antibiotics, other drugs, even painkillers, can keep the cycle going until the poor beleaguered immune system and liver have little or no resources left. Whilst recovery may be slow, at least with the SCD it is a good way to effect a recovery and a good place to start.

I hope this helps. Regards, Ali.

[littlelymie19]

I would agree with Andrea about needing the protein from meat in order to help detoxify the metals. However, if you have elevated ammonia (did you have a urine amino acid analysis?) you would want to limit the protein. Certain problems in the methylation cycle can result in excess ammonia and high protein can make that worse.

Do you tolerate meat or eggs?

Hey Rachel, so good to hear from you. I hope you're doing well! I have to catch up on the "OMG" thread...you all move so quickly over there, I can't keep up!

I don't have elevated ammonia, but I seem to react to all proteins except petrale sole. I'd eat it every day, but I'm worried about the heavy metal levels in fish.

I tried some chicken last night and reacted. Eggs are next on the list to try.

You only eat beef and peas, right? And your heart has done okay with that? Without any fats?

I'm just worried because I've been so restricted for 3 years, I'm starting to wonder how much of this is lyme and how much of this is malnutrition...and how much of this can be reversed.

Seacure. Google it. Sm. amounts of pre-digested protein plus some Omega 3.

Thank you for the suggestion! What is seacure made out of? I take amino acid supplements...is that the same thing?

I too, reiterate the point about you needing the fats. The body and particularly the brain needs plenty of fats and if the gall-bladder isn't used enough it will atrophy and end up having to be removed. Have you been checked to see if you have gall-stones or a blocked bile duct? That could be a reason why you cannot cope with fats.

The gall-bladder needs a good dose of fats regularly as it will then forcibly eject the bile out and take any sludge and stones with it. Low-fat diets are often linked with gall-bladder problems.

It is frightening when your digestion shuts down - many of us have been in a similar situation - where you are frightened to eat anything. The pain in your shoulder may well be an indicator that your heart is under stress. The heart needs many nutrients to function well - you can take supplements but the problem with that is not knowing what the optimum mix would be for your body. The advantage of taking nutrients in the form of fresh fruit and veg is that the body can absorb what it needs from them and as healing starts to take place absorption increases.

Thank you so much for sharing your story and your experience with the SCD.

I believe that my gall bladder has shut down like you've described, but I'm not sure if it's from lack of use or lyme toxins. Unfortunately I think it's from both, quite an unfortunate mix. Is there any way to reverse the gall bladder issues? I've tried buplereum (an herb) but haven't been able to tolerate it well in the past. Now when I try fish oil supplements, I have gall bladder attacks. Even a tiny amount of oil tends to send it off.

What you said about the heart does worry me. This situation that I'm in freaks me out a bit, as you can probably tell. If I had a normal EKG though, a normal chest xray, and a normal echocardiogram (even though I wasnt having pain at the time), does that mean I'm okay and I still will be able to reverse this?

Thanks for all of your advice everyone.

[Rachel--24]

Hey Rachel, so good to hear from you. I hope you're doing well! I have to catch up on the "OMG" thread...you all move so quickly over there, I can't keep up!

I don't have elevated ammonia, but I seem to react to all proteins except petrale sole. I'd eat it every day, but I'm worried about the heavy metal levels in fish.

I tried some chicken last night and reacted. Eggs are next on the list to try.

You only eat beef and peas, right? And your heart has done okay with that? Without any fats?

I'm just worried because I've been so restricted for 3 years, I'm starting to wonder how much of this is lyme and how much of this is malnutrition...and how much of this can be reversed.

Hi Little! I'm doing well...thanks!

Dont worry about catching up on the thread....we're there whenever you wanna pop in.

I actually only tolerate organic grass fed meat. I dont do well with chicken and just stick with the beef, which I have no problems with. I dont do well with fats either...but for some reason even with my restricted diet I am doing ok. I have plenty of energy and have not had problems with my heart (knock on wood).

Unfortunately, I dont tolerate eggs......I would love to be able to eat eggs.

I wasnt doing quite as well the past few weeks (lots of reactions) since I "lost" my brownies. I may have gotten them back (crossing fingers!)....and now I seem to be feeling good again. I can eat the beef daily.....but I cant tolerate too many peas (glutamates). My diet is way too restricted but I dont worry about it as long as I'm feeling ok. In my case I start going backwards when I try to add new foods in.....so I just stick with what is working for me.

I dont eat any fish due to the mercury levels.

I know that I have to correct some other issues before I'll be able to tolerate most of the things that will help me later on. In the past I've always gotten much worse trying to get some fats in. None of the supplements worked for me.....not even Seacure. A doctor put me on that a few years ago but I went downhill pretty rapidly.

Without the brownies my mood and energy dropped.....and I was more symptomatic....so maybe I'm getting some fats there?? Its not the healthiest choice....but I dont tolerate anything else....so for now its pretty much all I have.

My mood has been stable for a long time now....and for the most part I'm positive and happy. The past couple weeks I struggled with this....I had teary moments and just didnt feel like I had the same positive energy anymore. As soon as I added the brownies back in...this improved dramatically. I'm just going with it.

Whenever I've had problems with pain (I've had it everywhere) its always been due to things my body isnt tolerating.....foods and supplements. Have you started anything new that might be contributing to these symptoms you're having now? I've had some pretty scary things happen in the past...but its been awhile now since I've experienced anything really bad.

I hope you can figure it out soon!

[AliB]

Before I went gluten-free I was in a lot of pain with my stomach every time I ate. It had been coming on for several months and the doctors weren't much bothered other than offering me things like Omeprazole. What really told me that my Liver was struggling was the fact that my hair was falling out all over the place. My husband was getting fed up pulling it out of his dinner and off his clothes, and I was frightened that i would have to get a wig!

I decided to take some Milk Thistle for a few weeks which I stopped about 2 weeks before my digestion finally collapsed and I ended up with the typical 'Celiac' stools followed by raging Diarrhea. My doctor thought it might be gall-bladder but when I went for the Ultrasound there was nothing there - it was completely empty! I was stunned as, at the age of 50 I was pretty sure I would have a little collection floating around in there!

Then I suddenly remembered that a few weeks earlier I had noticed something in the loo that looked like peas when I hadn't eaten any - I had kind of looked, shrugged, flushed it and gone my way thinking no more of it, but by then I was wondering if, in fact, they had been stones!

It really looked as if the Milk thistle had worked. But more was to follow. About a week after going gluten-free/DF I was sat on the sofa reading the paper one afternoon when I suddenly got a throbbing pain in my left foot. At the same time I felt something 'running down' inside my ribs on the left under my arm. I felt it and it was pretty sore. I checked the Reflexology chart on the Internet and sure enough the pain in my foot tied in with the lower end of the liver.

It throbbed for several hours then over the next day gradually receded until within 2 days it was gone and so was the soreness in my liver. I suspect that my liver, relieved of having to deal with the gluten and dairy and having had the Milk thistle support over the previous weeks, finally had a clear-out of stones and sludge. It was very weird while it lasted but although my digestion was pretty rough and there was little I could eat, gradually it started to settle.

After a few weeks I discovered the SCD and haven't looked back. It has been a slow recovery but I am getting there. Now I am considering changing to a Raw Food diet to see if I can finally get the beasties, and particularly the Candida under control after all these years.

If you do decide to try the Milk Thistle, which is for Liver Support, the recommendation is to take it 6 weeks on and 6 weeks off.

My heart has been worrying me too. I have had ECG's and even had an ECG watch over the holiday period last year but it didn't show anything. However I constantly have this background 'throbbing' going on which I can feel right through my body. It does seem to be worse when I eat carbs - I suspect it is my digestion struggling. I feel it worse when I lay down at night, but then it is quiet and there is nothing else going on to distract me.

By the morning although it hasn't gone, it is more settled. That is why I am keen to try the Raw diet - my digestion obviously still isn't coping with some foods even though I am on the SCD. I suspect that because the Candida is still active it is preventing my gut healing properly. Because raw foods contain a lot of the enzymes needed for digestion it seems they would be more supportive than cooked 'dead' food.

I started yesterday with green smoothies and actually had some energy last evening so that was a good sign. This evening I just had a portion of beef casserole and some salad and I had indigestion all evening. As I didn't have that problem with the green stuff earlier, I am sure it was the cooked casserole. Anyway, I will give it a few weeks and see what happens. I have done a lot of research and there seems to be a lot of good results for a lot of different problems.

Watch this space!

PS. I read in a book last night that tender spots 'where the shoulder meets the arm' can apparently be indicative of B12 deficiency. Have you had your B12 level checked? If it is low or even low 'normal' it might be worth getting some sublingual B12 tablets. When I first went gluten-free I got symptoms indicative of low B12 although it was registering normal, like numb fingers and prickly feet and got some B12, and within a few days it had gone.

Many find that they develop weird symptoms after going gluten-free. I wonder if its due to die-back of some of the bacteria that was feeding on the gluten and perhaps was actually providing some of the nutrients that they now become short of. Only a theory, but it makes sense to me.

[pele]

I have to ask--have you tried a serious heavy duty digestive enzyme supplement like Digest Gold? And gobs of probiotics?