For those who follow an AIP or Paleo diet

[Raquel2021]

Hi,

For those whole follow an AIP or Paleo diet. What do you do for calcium intake. I know being celiac puts you at extra risk of having osteoporosis.  I cannot tolerate any diary substitutes and have read calcium supplements might do more harm than good and are not absorbed by the body. I have tried to have a bit of dairy and my neurological symptoms return.  There is a lot of conflicting information about calcium supplements even if taken with magnesium and the best way is to get it from foods. I know almonds, sardines and leafy green are good sources but cannot eat sardine every day.

[knitty kitty]

Hi, @Raquel2021,

I follow a Paleo diet and stick close to the AIP diet.  I do eat sources of dietary calcium such as broccoli, turnip greens, kale, salmon, and oranges.  I do take calcium supplements.  

Unfortunately, that was not always the case.  Early in my undiagnosed years, I developed lactose intolerance and casein allergy with very bad neurological symptoms, so I avoided dairy as much as possible.  I did not recognize the importance of supplementing calcium, thought I was eating enough broccoli, and am now dealing with osteopenia.  I've cracked a couple of ribs, broken my fibula (outside lower leg bone), and crushed three vertebrae, all in separate incidents.

Things I've learned along my journey....

Pregnancy can pull calcium out of the mother's bones for the baby's bones.  There's an old wives' tale that says for every child the mother loses a tooth.  

Medications can cause calcium loss.  Proton pump inhibitors, antidepressants, sleep aids, highblood pressure medications, thiazide and loop diuretics, diabetic medications, thyroid replacement therapy, lithium, corticosteroids, and some forms of birth control cause bone loss. 

Since I have been exposed to most of those medications that induce calcium loss and avoid dairy like the plague, I choose to supplement Calcium.  Calcium deficiency can cause neurological symptoms like confusion, anxiety, depression, memory loss and muscle cramps.  

Calcium supplements that I tolerate well is in the form calcium malate citrate.  This form is absorbed better than some other forms like calcium oxide.  Calcium lactate is made from shells of muscles and oysters.  If you have an allergy to shellfish or crustaceans like I do, do not take calcium lactate.

Yes, balance calcium and magnesium intake.  Twice as much Calcium as magnesium is a good rule of thumb.  Take calcium and magnesium at different times so they don't compete with each other for absorption.  

Bones need trace minerals like Boron, Copper, Manganese, Selenium, Iron, and Zinc, too. 

Bones need Vitamin D.  Vitamin D level should be about 80 ng/L or above.  At this level, Vitamin D can function as a hormone like it's supposed to do, being a powerful immunoregulator, reducer of inflammation and bone builder.  

Bones need more vitamins:  Vitamin K, Riboflavin Vitamin B 2, Pyridoxine B 6, Folate B9, Choline, and Cobalamine B12. And of course Thiamine B 1 to provide energy for all that bone building work.  

It's very difficult to eat enough to correct nutritional deficiencies.  Supplementing while the intestines are healing is beneficial.  Do discuss all supplements with your doctor and nutritionist.  

Perhaps @cristiana can join us and share about Dexa scans.

Hope this helps!

[Raquel2021]

30 minutes ago, knitty kitty said:

Hi, @Raquel2021,

I follow a Paleo diet and stick close to the AIP diet.  I do eat sources of dietary calcium such as broccoli, turnip greens, kale, salmon, and oranges.  I do take calcium supplements.  

Unfortunately, that was not always the case.  Early in my undiagnosed years, I developed lactose intolerance and casein allergy with very bad neurological symptoms, so I avoided dairy as much as possible.  I did not recognize the importance of supplementing calcium, thought I was eating enough broccoli, and am now dealing with osteopenia.  I've cracked a couple of ribs, broken my fibula (outside lower leg bone), and crushed three vertebrae, all in separate incidents.

Things I've learned along my journey....

Pregnancy can pull calcium out of the mother's bones for the baby's bones.  There's an old wives' tale that says for every child the mother loses a tooth.  

Medications can cause calcium loss.  Proton pump inhibitors, antidepressants, sleep aids, highblood pressure medications, thiazide and loop diuretics, diabetic medications, thyroid replacement therapy, lithium, corticosteroids, and some forms of birth control cause bone loss. 

Since I have been exposed to most of those medications that induce calcium loss and avoid dairy like the plague, I choose to supplement Calcium.  Calcium deficiency can cause neurological symptoms like confusion, anxiety, depression, memory loss and muscle cramps.  

Calcium supplements that I tolerate well is in the form calcium malate citrate.  This form is absorbed better than some other forms like calcium oxide.  Calcium lactate is made from shells of muscles and oysters.  If you have an allergy to shellfish or crustaceans like I do, do not take calcium lactate.

Yes, balance calcium and magnesium intake.  Twice as much Calcium as magnesium is a good rule of thumb.  Take calcium and magnesium at different times so they don't compete with each other for absorption.  

Bones need trace minerals like Boron, Copper, Manganese, Selenium, Iron, and Zinc, too. 

Bones need Vitamin D.  Vitamin D level should be about 80 ng/L or above.  At this level, Vitamin D can function as a hormone like it's supposed to do, being a powerful immunoregulator, reducer of inflammation and bone builder.  

Bones need more vitamins:  Vitamin K, Riboflavin Vitamin B 2, Pyridoxine B 6, Folate B9, Choline, and Cobalamine B12. And of course Thiamine B 1 to provide energy for all that bone building work.  

It's very difficult to eat enough to correct nutritional deficiencies.  Supplementing while the intestines are healing is beneficial.  Do discuss all supplements with your doctor and nutritionist.  

Perhaps @cristiana can join us and share about Dexa scans.

Hope this helps!

Thanks so much. Very helpful.  I am sorry to hear about your Osteopenia. I have been eating some of the Silk coconut yogurt but it gives me bad reflux and I wonder if it could have some gluten in it. I don't tolerate it well and only eat half a cup a day. I try to eat beans sometimes, kale almonds, sardines, I eat salmon but not the bones. I just hate having to give up dairy as well.  I just read some conflicting info about calcium supplements but what are we supposed to do. My mom has osteopenia and drinks milk and plenty of yogurt every day so go figure. 

[Raquel2021]

For

42 minutes ago, knitty kitty said:

Hi, @Raquel2021,

I follow a Paleo diet and stick close to the AIP diet.  I do eat sources of dietary calcium such as broccoli, turnip greens, kale, salmon, and oranges.  I do take calcium supplements.  

Unfortunately, that was not always the case.  Early in my undiagnosed years, I developed lactose intolerance and casein allergy with very bad neurological symptoms, so I avoided dairy as much as possible.  I did not recognize the importance of supplementing calcium, thought I was eating enough broccoli, and am now dealing with osteopenia.  I've cracked a couple of ribs, broken my fibula (outside lower leg bone), and crushed three vertebrae, all in separate incidents.

Things I've learned along my journey....

Pregnancy can pull calcium out of the mother's bones for the baby's bones.  There's an old wives' tale that says for every child the mother loses a tooth.  

Medications can cause calcium loss.  Proton pump inhibitors, antidepressants, sleep aids, highblood pressure medications, thiazide and loop diuretics, diabetic medications, thyroid replacement therapy, lithium, corticosteroids, and some forms of birth control cause bone loss. 

Since I have been exposed to most of those medications that induce calcium loss and avoid dairy like the plague, I choose to supplement Calcium.  Calcium deficiency can cause neurological symptoms like confusion, anxiety, depression, memory loss and muscle cramps.  

Calcium supplements that I tolerate well is in the form calcium malate citrate.  This form is absorbed better than some other forms like calcium oxide.  Calcium lactate is made from shells of muscles and oysters.  If you have an allergy to shellfish or crustaceans like I do, do not take calcium lactate.

Yes, balance calcium and magnesium intake.  Twice as much Calcium as magnesium is a good rule of thumb.  Take calcium and magnesium at different times so they don't compete with each other for absorption.  

Bones need trace minerals like Boron, Copper, Manganese, Selenium, Iron, and Zinc, too. 

Bones need Vitamin D.  Vitamin D level should be about 80 ng/L or above.  At this level, Vitamin D can function as a hormone like it's supposed to do, being a powerful immunoregulator, reducer of inflammation and bone builder.  

Bones need more vitamins:  Vitamin K, Riboflavin Vitamin B 2, Pyridoxine B 6, Folate B9, Choline, and Cobalamine B12. And of course Thiamine B 1 to provide energy for all that bone building work.  

It's very difficult to eat enough to correct nutritional deficiencies.  Supplementing while the intestines are healing is beneficial.  Do discuss all supplements with your doctor and nutritionist.  

Perhaps @cristiana can join us and share about Dexa scans.

Hope this helps!

Forgot to ask. Do ypu feel that taking the calcium supplements and.other supplements have helped stop the progression of the Osteopenia?

[knitty kitty]

Yes, I do think all of these supplements have helped my overall health and at least has slowed the progression of osteopenia.  

The Silk coconut yogurt has pea protein powder or rice flour, both of which contain irritating lectins.  The AIP diet eliminates peas and legumes and grains including rice, and highly processed things like this.  

Have you tried taking probiotics and skipping the yogurt for now?

[Raquel2021]

Yes.  It has rice starch which is not great. But I have a super hard time keeping my weight on and I am currently losing weight.  Waiting less than I did in my twenties. I took probiotics before, high quality one recommended by a health store person that made my face numbness and tingling returned with a revenge so I was super scared to try anything else. I react to soy, dairy and eggs. Never thought this would happened to me. If I eat strictly vegetables and meat no legumes or nuts I can easily lose 5 pounds in one week. I also do not tolerate sugar at all by have been told my A1C is perfect.  Like 5.1 or something. 

[cristiana]

Hello @knitty kitty and @Raquel2021

Yes... re: Dexa scans.  Here in the UK these are normally offered by state medical care (the National Health Service) following a coeliac diagnosis.  I think I had one shortly after my diagnosis (within the first year) and had another one perhaps five years later?  

A very straightforward test - you lie flat on your back and a scanner moves quite quickly the length of your spine.  Nowhere near as noisy as an MRI and much quicker.  Anyway, from memory I think I was told the results there and then.

My back was OK but my Consultant believes in prevention being better than cure (I agree!) and has put me down for yearly vitamin D tests and has prescribed Vitamin D supplementation.  No calcium has been recommended to date but I guess that could change.

I've only had a quick read of your posts but wondered, have you ever managed to ascertain if your dairy product related neurological issues might be caused by lactose, casein or both?  

Cristiana

Edited November 13, 2023 by cristiana

[Raquel2021]

4 hours ago, cristiana said:

Hello @knitty kitty and @Raquel2021

Yes... re: Dexa scans.  Here in the UK these are normally offered by state medical care (the National Health Service) following a coeliac diagnosis.  I think I had one shortly after my diagnosis (within the first year) and had another one perhaps five years later?  

A very straightforward test - you lie flat on your back and a scanner moves quite quickly the length of your spine.  Nowhere near as noisy as an MRI and much quicker.  Anyway, from memory I think I was told the results there and then.

My back was OK but my Consultant believes in prevention being better than cure (I agree!) and has put me down for yearly vitamin D tests and has prescribed Vitamin D supplementation.  No calcium has been recommended to date but I guess that could change.

I've only had a quick read of your posts but wondered, have you ever managed to ascertain if your dairy product related neurological issues might be caused by lactose, casein or both?  

Cristiana

Thanks Cristina.  I used to have a lactose free yogurt and still had the same effect so I believe is the casein. I will talk to my Dr about the scan. Do you consume dairy products?

[knitty kitty]

Thanks, @cristiana!

@Raquel2021, 

You were wondering if the Silk coconut yogurt could have gluten in it because it gives you bad reflux and you don't tolerate it well.  From the ingredients, it looks clear.  One of the ingredients is calcium citrate, a calcium supplement added by the manufacturer.  You would do better to take an over the counter calcium citrate supplement, and skip all the saturated fats and sugars in the coconut yogurt.  

We need Thiamine Vitamin B 1 to digest fats, sugars, and proteins and turn them into energy for the body to function. 

When we become low in Thiamine, in order to "spend" as little thiamine as possible, our bodies switch from burning glucose for energy to burning fat and muscle.  Insufficient Thiamine is the reason for weight loss and inability to keep weight on.  

Our bodies cannot make thiamine, so we have to get thiamine from our diet or supplementation.  If we don't get sufficient thiamine every day, we can use up thiamine stored inside cells very quickly (3 days to 3 weeks).  

Remember, flours containing gluten are required to be enriched with vitamins and minerals lost in processing, so manufacturers add vitamin and mineral supplements to processed gluten products.  When we follow a gluten free diet, we need to get these vitamins and minerals from a nutrient dense diet or supplementation.  Gluten free processed foods are not required to be enriched with vitamins and minerals.  These are empty calories.  There's little nutritional value there.  

We need greater amounts of  thiamine when we are sick, emotionally stressed and physically active.  Yet, common symptoms of CeD, vomiting, Gerd, diarrhea, constipation, rapid transit time, gastroparesis, and damage to the small intestine make absorbing sufficient thiamine and other micronutrients very difficult.  Supplementing with vitamins and minerals while you're healing ensures that your body has these essential nutrients necessary to reduce inflammation, repair damage, and return to health.  

Thiamine insufficiency symptoms can wax and wane mysteriously.  A twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function.  Because the brain is functioning better, symptoms can improve.  However, if high carbohydrate foods are eaten, thiamine can become insufficient again, and symptoms return.   Thiamine insufficiency can manifest as gastrointestinal beriberi with abdominal pain, nausea, vomiting, and lactic acidosis.  Sounds like the same symptoms one gets when glutened, eh?   Our gastrointestinal tract doesn't have a large vocabulary.  Not everything is a reaction to gluten.

Given sufficient nutrients and time, our intestines can heal, regrowing the villi in our intestines.  These villi produce lactase, an enzyme needed to digest dairy.  Lactose intolerance is common in CeD because these villi get damaged and cannot produce lactase.  But with healing, the villi can once again produce the enzyme lactase and dairy can be digested again.  This could be the reason your mom can still consume dairy.  Perhaps you will be able to do so once you heal.  

Consuming dairy is not an option for me since I have an allergy to casein and react to dairy as though it were gluten because the casein molecules resemble gluten molecules.  This is molecular mimicry.  Some Celiacs have continuing symptoms because dairy can cause continuing inflammation in the intestines and affect the absorption of vitamins and minerals.  This is also the reason the AIP diet doesn't allow dairy.

There's serious consequences to becoming calcium deficient, so I prefer to take supplements.  The benefits of supplementing calcium  outweigh the cons for me.  Besides, I take Thiamine which helps regulate how calcium is utilized in the body.  Not enough research has been done on calcium and its interactions with other nutritional factors.  

I took thiamine hydrochloride and Benfotiamine to correct my Thiamine deficiency.  Thiamine needs magnesium and the other B vitamins to work properly, so I supplement those as well.

The WHO has a field test for Thiamine deficiency.  See if you can rise from a squat without assistance.  I failed that test.  

Hope this helps!

[cristiana]

Hi Raquel

Yes, but when I was first diagnosed I had diarrhea when I consumed yoghurt, milk (strangely, even lactose free) and soft cheeses.  However, cheddar cheese was fine, which is low in lactose but high in casein, or so I am led to believe.  

Now I am fine with all the above, but I still find that if I am a bit constipated a couple of lattes act as a very mild laxative, shall we say!  

I did have a lot of muscle tingling and twitching for quite a while following my diagnosis - I always thought of those symptoms as neurological but never made the association with dairy products.  In my own case I felt it was more likely to do with deficiencies, such as low iron and B12, but maybe dairy products were part of the problem?

Cristiana

[knitty kitty]

Low magnesium can cause twitching and neuropathy (tingling), too.  

Magnesium and calcium work together for muscle contraction and relaxation.  

Maybe all that calcium got your magnesium/calcium balance off causing the symptoms.

The eight B vitamins overlap, too.  Low Pyridoxine, Folate, B12 and Thiamine can cause peripheral neuropathy, tingling or buzzing in the hands and feet.

 

[cristiana]

Ah... yes... @knitty kitty.  I forgot the all important magnesium.  That's amazing stuff!  I remember the most annoying eye twitches around the time of my diagnosis and a lot of people on this forum had posted about the wonders of taking magnesium for twitches.  The twitching around my eyes led me to believe something really awful was going on, net result the anxiety led to more  eye twitching.  The magnesium worked really well to stop all that, in a matter of days.  I love this forum!

Thinking about it, my father gets twitches and I've never suggested he takes a supplement.   

Oh, if only I could get his GP to test him for coeliac disease! He says as he isn't anemic there is no point....😟

Edited November 14, 2023 by cristiana