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Hypocholesterolemia - A.k.a. Really Low Cholesterol

nvsmom

By nvsmom
in Related Issues & Disorders

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nvsmom Community Regular
nvsmom
Posted

Hi all.

I was going through my recent medical records in an effort to better manage my hypothyroidism (not going great yet but getting better...at this point, I think the gluten-free diet is easier for me to manage than hashi's :rolleyes: ). My hormone levels aren't responding to thyroid hormone therapy like I think they should so I started going through my other tests to see if anything stood out and my cholesterol tests caught my eye. Below are my tests after 12 hours of fasting; I added the American conversion on the end (we do it differently up here in Canada):

Cholesterol - 3.92 (ref range 3.80-5.20) ~ 156 (USA)

Triglycerides - 0.47 (0.60-2.30) ~ 39 (USA)

HDL Cholesterol - 1.63 ( >=0.91) ~ 65

LDL Cholesterol - 2.08 (2.00-3.40) ~ 83

Total:HDL Cholesterol ratio - 2.4

Low, eh? When I first saw these numbers (6 months ago when I was diagnosed) I thought, Great. I got lucky here, because low cholesterol and a high B12 were my only abnormal blood work which is really lucky for a celiac... Now I don't know if I was really lucky or not.

I was googling the link of low cholesterol to hypothyroidism and there was none. Zip. There is a link to high cholesterol but that's it. The only link I could find was that triglycerides are needed to help convert T4 to T3. T4 is made by the thyroid and converted to usable T3 so I assume I may have a tougher time converting to T3 which isn't at all helpful to managing thyroid disease... but that is besides the point.

I found that too low of cholesterol (below 160 in the USA) is called hypocholesterolemia and that it is associated with health problems of the liver, cancers, traumas, and malabsorption (light bulb turns on here), but the info I found is unclear as to whether the low cholesterol levels causes problems or is a result of health problems... I think it was the latter.

I googled more and found that cholesterol levels don't change much on a gluten-free diet for celiacs. They might go up a bit but not a bunch. I got the impression that health problems could arise in an untreated celiac with hypocholesterolemia though.

Overall, I am unsatisfied with the info I found on the web so I came here. :D

So, I was wondering how common is low cholesterol in celiacs? Is this something I should look into more or assume it's fine? Has anyone experienced their cholesterol levels rising after a time on the gluten-free diet? I'm hoping mine will come up a bit as it might help my hashi's ... but when hashi's starts coming undercontrol, cholesterol levels often drop so I don't know how that will balance out.

I would love to hear any advice or experience in this area, or see any links that you found helpful. If you have hashi's, please let me know your experience in this area. Thanks so much everyone! :)

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Gemini Experienced
Gemini
Posted

Hi all.

I was going through my recent medical records in an effort to better manage my hypothyroidism (not going great yet but getting better...at this point, I think the gluten-free diet is easier for me to manage than hashi's :rolleyes: ). My hormone levels aren't responding to thyroid hormone therapy like I think they should so I started going through my other tests to see if anything stood out and my cholesterol tests caught my eye. Below are my tests after 12 hours of fasting; I added the American conversion on the end (we do it differently up here in Canada):

Cholesterol - 3.92 (ref range 3.80-5.20) ~ 156 (USA)

Triglycerides - 0.47 (0.60-2.30) ~ 39 (USA)

HDL Cholesterol - 1.63 ( >=0.91) ~ 65

LDL Cholesterol - 2.08 (2.00-3.40) ~ 83

Total:HDL Cholesterol ratio - 2.4

Low, eh? When I first saw these numbers (6 months ago when I was diagnosed) I thought, Great. I got lucky here, because low cholesterol and a high B12 were my only abnormal blood work which is really lucky for a celiac... Now I don't know if I was really lucky or not.

I was googling the link of low cholesterol to hypothyroidism and there was none. Zip. There is a link to high cholesterol but that's it. The only link I could find was that triglycerides are needed to help convert T4 to T3. T4 is made by the thyroid and converted to usable T3 so I assume I may have a tougher time converting to T3 which isn't at all helpful to managing thyroid disease... but that is besides the point.

I found that too low of cholesterol (below 160 in the USA) is called hypocholesterolemia and that it is associated with health problems of the liver, cancers, traumas, and malabsorption (light bulb turns on here), but the info I found is unclear as to whether the low cholesterol levels causes problems or is a result of health problems... I think it was the latter.

I googled more and found that cholesterol levels don't change much on a gluten-free diet for celiacs. They might go up a bit but not a bunch. I got the impression that health problems could arise in an untreated celiac with hypocholesterolemia though.

Overall, I am unsatisfied with the info I found on the web so I came here. :D

So, I was wondering how common is low cholesterol in celiacs? Is this something I should look into more or assume it's fine? Has anyone experienced their cholesterol levels rising after a time on the gluten-free diet? I'm hoping mine will come up a bit as it might help my hashi's ... but when hashi's starts coming undercontrol, cholesterol levels often drop so I don't know how that will balance out.

I would love to hear any advice or experience in this area, or see any links that you found helpful. If you have hashi's, please let me know your experience in this area. Thanks so much everyone! :)

I have Celiac and Hashi's, plus my cholesterol is low. I kind of like it. No hassles from anyone when they see it. ;)

The year before I was diagnosed with Celiac, and suffering from extreme malabsorption, my cholesterol always came in around 125. Triglycerides are always on the very low end of normal. The most recent cholesterol testing was done 3 years ago and it had gone up to 149. I had been gluten-free for 5 years then. It was also a non-fasting number...I just refuse to go without breakfast and recent studies have shown that the difference between fasting and non-fasting is not enough to matter. It may alter is by 10 points, maximum.

I also had really low good cholesterol too....scary low. It's supposed to be a minimum of 40 and mine was 25. I have that up to 60 now and that's the only number, besides the triglycerides that I care about. My thyroid has been pretty stable for about a year now, after a blip caused by better absorption. I blew hyper when the dose was too high after healing.

I am not worried about low cholesterol. I am never going to have high cholesterol because I still don't absorb fats well but I think that's good. No heart disease worries. I don't eat a diet conducive to high cholesterol either. I have enough work I do to stay healthy and, as I seem to be doing well right now and have been for awhile, I don't worry about it. I will say that it is harder to manage Hashi's and get the thyroid to play nice as opposed to Celiac. I found the Celiac easy.....not so much with Hashi's.

bartfull Rising Star
bartfull
Posted

About 20 years ago I went to a "doctor" for a complete physical. At that time he said the only things abnormal on my blood tests were that my iron level was really high and that my cholesterol was the lowest he'd ever seen. He didn't seem too concerned about either, but then again, he wasn't much of a doctor.

I haven't had it tested since. No insurance. I know this isn't much help, but if there is a tie-in with celiac that would explain it.

Gemini Experienced
Gemini
Posted

I guess I should have added that low cholesterol is very mich linked to celiac if you suffer from severe malabsorption with it. You just aren't absorbing fats, which are the first food group to tank because fats are so hard to digest anyway. By the time I was diagnosed, I wasn't absorbing anything.

That may have been the earliest indication you had a gluten problem, Bart. Really low cholesterol is very uncommon, unless you are vegetarian and eat absolutely no animal products at all. Most people that have a really high cholesterol problem eat the typical American diet, which will raise it high in many people. Too much processed crap and animal fats. And yes, there are other reasons for elevated numbers but diet is huge. There are so many clues to Celiac that doctors miss and they are right there in your blood work.

june27 Apprentice
june27
Posted

This is a very interesting thread...

My cholesterol has been low for as long as I have been getting it tested regularly (~12 years). My total cholesterol has ranged from 105 to 130 (or something in that range). I was only diagnosed (and then went gluten-free) last year, so it will be interesting to see if anything changes the next time they test it. In addition to low total cholesterol, my HDL levels are borderline (they want it above 40, and my has ranged from 37 to 41 over the years). My PCP gave me a nice 'to do' list of ways to increase HDL levels, but I already do almost all of them so it was pretty useless. My naturopathic doc had me start taking some enzymes last fall, but 2 months later, HDL levels still had not improved.

I am hoping that more time gluten-free will allow my body to heal and start absorbing fat as it should...

nvsmom Community Regular
nvsmom
Posted
  • Author

I have Celiac and Hashi's, plus my cholesterol is low. I kind of like it. No hassles from anyone when they see it. ;)

The year before I was diagnosed with Celiac, and suffering from extreme malabsorption, my cholesterol always came in around 125. Triglycerides are always on the very low end of normal. The most recent cholesterol testing was done 3 years ago and it had gone up to 149. I had been gluten-free for 5 years then. It was also a non-fasting number...I just refuse to go without breakfast and recent studies have shown that the difference between fasting and non-fasting is not enough to matter. It may alter is by 10 points, maximum.

I also had really low good cholesterol too....scary low. It's supposed to be a minimum of 40 and mine was 25. I have that up to 60 now and that's the only number, besides the triglycerides that I care about. My thyroid has been pretty stable for about a year now, after a blip caused by better absorption. I blew hyper when the dose was too high after healing.

I am not worried about low cholesterol. I am never going to have high cholesterol because I still don't absorb fats well but I think that's good. No heart disease worries. I don't eat a diet conducive to high cholesterol either. I have enough work I do to stay healthy and, as I seem to be doing well right now and have been for awhile, I don't worry about it. I will say that it is harder to manage Hashi's and get the thyroid to play nice as opposed to Celiac. I found the Celiac easy.....not so much with Hashi's.

Whoa, that is low! LOL I see it did go up a bit over time but not much, eh? I'm curious if my thyroid meds will throw me hyper once I start to heal... I've tended towards the "slug" range for thyroid issues so going hyper would be a switch. ;)

About 20 years ago I went to a "doctor" for a complete physical. At that time he said the only things abnormal on my blood tests were that my iron level was really high and that my cholesterol was the lowest he'd ever seen. He didn't seem too concerned about either, but then again, he wasn't much of a doctor.

I haven't had it tested since. No insurance. I know this isn't much help, but if there is a tie-in with celiac that would explain it.

I've heard it's connected because we don't absorb fats... It is a nice bonus (if it's healthy) since once I heal I'll have to skip my evening handful of almonds and chocolate chips. lol

This is a very interesting thread...

My cholesterol has been low for as long as I have been getting it tested regularly (~12 years). My total cholesterol has ranged from 105 to 130 (or something in that range). I was only diagnosed (and then went gluten-free) last year, so it will be interesting to see if anything changes the next time they test it. In addition to low total cholesterol, my HDL levels are borderline (they want it above 40, and my has ranged from 37 to 41 over the years). My PCP gave me a nice 'to do' list of ways to increase HDL levels, but I already do almost all of them so it was pretty useless. My naturopathic doc had me start taking some enzymes last fall, but 2 months later, HDL levels still had not improved.

I am hoping that more time gluten-free will allow my body to heal and start absorbing fat as it should...

Wow... really low! It's strange what this disease can affect. Good luck getting your HDL up, at least your LDL must be low too.... I wonder how long it will take before numbers change from the healing. Hmmm.

Gemini Experienced
Gemini
Posted
Whoa, that is low! LOL I see it did go up a bit over time but not much, eh? I'm curious if my thyroid meds will throw me hyper once I start to heal... I've tended towards the "slug" range for thyroid issues so going hyper would be a switch.

;)

Oh....you do not want to be hyper! It's horrible. Heart palps, not sleeping at all and feeling like you've just dropped a handful of speed. :o Just keep an eye on symptoms. Mine happened at the 3 year mark with healing and WHAM!

I lost 10 pounds overnight and I don't have 10 pounds to spare. I'll take sluggy low thyoid any day of the week.

I don't eat a diet that would make cholesterol go up much and I know I don't absorb fats 100%. Healing doesn't have to occur to 100% to be healthy. That's the beauty of the design of the small intestine...there is overlap with regards to nutrient absorption so fats are absorbed in more than one place. Same with all the other nutrients. I may not absorb fats in all areas but enough to not be deficient and feel good and have energy. I think it all depends also on how long you went before a diagnosis was made.

The important number to me that is rising well is the good cholesterol. I eat enough salmon to support the fishing industry and that's what did it. Go high on all those healthy fats and improvement will come. it's that patience thing you have to keep in mind....it will not happen overnight.

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nvsmom Community Regular
nvsmom
Posted
  • Author

;)

Oh....you do not want to be hyper! It's horrible. Heart palps, not sleeping at all and feeling like you've just dropped a handful of speed. :o Just keep an eye on symptoms. Mine happened at the 3 year mark with healing and WHAM!

I lost 10 pounds overnight and I don't have 10 pounds to spare. I'll take sluggy low thyoid any day of the week.

I don't eat a diet that would make cholesterol go up much and I know I don't absorb fats 100%. Healing doesn't have to occur to 100% to be healthy. That's the beauty of the design of the small intestine...there is overlap with regards to nutrient absorption so fats are absorbed in more than one place. Same with all the other nutrients. I may not absorb fats in all areas but enough to not be deficient and feel good and have energy. I think it all depends also on how long you went before a diagnosis was made.

The important number to me that is rising well is the good cholesterol. I eat enough salmon to support the fishing industry and that's what did it. Go high on all those healthy fats and improvement will come. it's that patience thing you have to keep in mind....it will not happen overnight.

I've had glimpses of energy over the last fe weeks; I think I'm getting my levels close to where they should be. I am pretty sure I've never been hyper, I can fall asleep at the drop of a hat. Those hyper symptoms sound nasty.

I eat fish a couple of times a week but I'm on the Canadian prairies so fresh fish is expensive... and not really that fresh. If you want a REALLY good steak, this is the place to be. lol ;) I do eat fish oil and cod liver oitl tablets twice a day, as well as evening primrose oil... that helps, right?

Patience... That word keeps popping up over and over when dealing with autoimmune issues! :rolleyes:

Roda Rising Star
Roda
Posted

Another low cholesterol here before I was diagnosed. HDL, LDL, total cholesterol and triglicerides all below reference range. The trigliceride level was so low(another couple of points lower it wouldn't have been a number to report) that a doctor said I was lucky and that she had never seen a person ever with a level that low. Fast forward 4 years gluten free and my levels have all normalized. Now I'm paranoid that I'm going to develope high cholesterol since I'm "normal" now since it runs in my family.

My father and brother, whom I suspect have gluten issues also, both have very low cholesterol levels.

Ninja Contributor
Ninja
Posted

Thank you for posting this! Spurred me to go back and look at my cholesterol results. Mine is lowish as well (140)... or was before gluten-free. Not sure what it is now...

  • 3 months later...
marlowg Newbie
marlowg
Posted

Be wary of low cholesterol numbers. They can lead to psychiatric symptoms and seizures. If you do an internet search for celiac disease and low cholesterol you will find many people reporting these problems.

 

frieze Community Regular
frieze
Posted

Be wary of low cholesterol numbers. They can lead to psychiatric symptoms and seizures. If you do an internet search for celiac disease and low cholesterol you will find many people reporting these problems.

that makes me wonder about some patients (not celiac) whose docs are SO happy with really low numbers.....geesh

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

when I had a free cholesterol screening completed the other month, I was told my numbers were great.  When searching for what cholesterol numbers meant, I initially came across this thread, and that low cholesterol does exist and it's not necessarily a good thing.  My cholesterol has been dropping, but my fat intake hasn't been, and I eat carbs  :mellow: In fact, now I've been trying to increase my fat intake even more.  Here are my results from the past few years:

 

Here are my screening results from the past few years (all numbers are mg/dl):

 

                                          Total  Cholesterol     HDL     TC/HDL     LDL     Total Triglycerides  

 

October 2010 (Fasting)            171                     52          3.3           96        116

 

April 2012 (Non-fasting)           153                    60           2.5          -           -

 

April 2013 (Fasting)                  135                   52            2.6        N/A meant LDL under 100  

                                                                                                                            N/A meant triglycerides less than 45

 

I plan on making an appointment with my PCP to get my levels tested again since they wouldn't fully register on the screening equipment.  I know they are low, but are they super low, or just below the cut-off?  Either way, I don't limit cholesterol, and I make sure to eat plenty of fat, and I have a history of stroke and heart disease on both sides of my family.  My maternal grandmother has had a small stroke, and high cholesterol, and my late paternal grandfather had type 2 diabetes, and died before I met him from a heart attack  :(

nvsmom Community Regular
nvsmom
Posted
  • Author

The old cholesterol - heart/stroke link isn't as strongly supported as it used to be. yes, high cholesterol is often seen in patients with heart problems but inflammation (from too much processed foods or sugars, and AI diseases) are now thought to play a larger role.

 

We need cholesterol to function. Really low cholesterol isn't a good thing, although it is common amoung celiacs. It is good you are getting yours re-addressed, P of P.

 

I finally found a doctor who is retesting that for me and trying to get my cholesterol up a bit... that's not a sentence you'll see often, eh?  LOL :rolleyes:

Gemini Experienced
Gemini
Posted

The old cholesterol - heart/stroke link isn't as strongly supported as it used to be. yes, high cholesterol is often seen in patients with heart problems but inflammation (from too much processed foods or sugars, and AI diseases) are now thought to play a larger role.

 

We need cholesterol to function. Really low cholesterol isn't a good thing, although it is common amoung celiacs. It is good you are getting yours re-addressed, P of P.

 

I finally found a doctor who is retesting that for me and trying to get my cholesterol up a bit.  .. that's not a sentence you'll see often, eh?  LOL :rolleyes:

Yup...correct again, nvsmom!   :)   People get overly worried about the heart attack/stroke problem with cholesterol but only 50% of all heart attack patients had high cholesterol.  That was the last research I read.  It has more to do with sugar intake and inflammation.  High blood sugar levels also make blood sticky and fats stick to arteries when blood sugar is high.  Pay more attention to your blood sugar than cholesterol counts for greater health benefits.

 

As for me, I never worry about the cholesterol number.  Mine will always be lower, due to Celiac and I just don't plan on worrying about numbers that much. At 149, non-fasting, and feeling well, anxiety over numbers is not something I do.  Unless you have symptoms of problems related to low cholesterol, that number may be right for you.  Not everyone is designed to have the same number.  I also like to think I won't have to worry about heart disease, which is not in my family at all. (think many un-diagnosed Celiacs)  If I am not absorbing fats like the normal population, they won't be messing up my arteries.  My blood sugar is great too so I am happy with that.

 

Let us know what this doctor suggests for raising cholesterol. You are right...it's not something you normally hear about but I am curious...... :)

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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