Gluten intolerance and osteoporosis

[Graceissufficient]

I see the very close association between celiac disease and osteop, but is there also an association with gluten intolerance, not CD?

Anyone's gp suggested going on an exclusion diet to check?

Sounds to me like one more thing worth trying.

[2mate00s]

I'm doing it myself as a test. Not going on meds yet...doctors happy I'm making an informed decision. I'll be 18 months on a gluten free diet by yhe time I get the next dexa scan. Tbh I've been asking did I have CD for 35 years and was told I had IBS. Since being on a GF diet my whole health has improved. The fact I'm now surrounded by a family of coeliac makes the transition easy.

Is love to hear from anyone who's tried it and if it made any difference at all

[Graceissufficient in reply to 2mate00s]

V interesting. Please post the results! Did u ever have a celiac test?

Gluten intolerance is definitely a thing, science accepts, but a different thing from celiac. But if it's a combination of malabsorption of D and other nutrients, and inflammation and disruption of the gut microbiome which causes or worsens osteop in celiac, I think gluten intolerance probably does all thise things too. It may be being overlooked as a contributory or even main cause.

[Lynneypin]

I’m on a gluten free diet anyway as I have autoimmune thyroid disease. My gut definitely appreciates it 😉

[Graceissufficient in reply to Lynneypin]

Yes, I think most of us who are off gluten after an exclusion diet would never go back.

But there must have been years of damage before I got there - maybe in those crucial adolescent bone building years too.

Another thing we perhaps shoukd nag the grown up children about - do an on line test for celiac, then an exclusion test. One in two women get osteop - this thing has to be fought early.

[Fruitandnutcase]

I’ve been totally GF since being diagnosed with inflammatory arthritis in 2014. I had Graves’ disease in 2012 and when I developed the RA I decided enough was enough and went totally GF.

My fracture liaison nurse was a bit ‘sniffy’ about it and poo-pooed the idea when I mentioned it but when I pointed out that it had done wonders for my IBS he accepted it. My gut loves it.

I have no idea whether or not it will help with osteoporosis though - I had been gluten free for quite a long time before I fractured my wrist in 2020 and was found to have osteoporosis.

I had already catered for people who are coeliac so I knew what to do, I joined coeliac.org.uk/home/ they have a really great website and you get a very good handbook that must list every GF food, ingredient and restaurant known to mankind

[Graceissufficient in reply to Fruitandnutcase]

Yes. It may be there's a lot of damage before we come off.

Those of us with this intolerance, that is. I assume you were screened for celiac before the IBS diagnosis? Sounds like maybe you didn't have IBS but G. int.

[Fruitandnutcase in reply to Graceissufficient]

No, I was never screened for gluten. I was diagnosed with IBS by where the pain was and a barium enema. That was back in about 1985 so I’ve had IBS for a very long t8me.

I’m afraid I took a look at my face in a mirror after I had eaten croissants, pains au raisin and baguettes non stop all the way from Calais to the south of France back in 2014/15. I was so puffy I looked horrendous.

I have a photo that I asked my other half to take and a close friend didn’t even recognise me when I showed it to her! I tried a test I bought from a pharmacy which didn’t show that I was coeliac but I went GF anyway. I lost the puffiness and my gut improved so much that I haven’t eaten gluten containing food since. I imagine I am intolerant rather than coeliac and there is no way I want to eat gluten just to find out.

I would definitely advise people that if you really want / need to know to have the gluten tolerance test before they stop eating gluten containing foods

[Graceissufficient in reply to Fruitandnutcase]

Absolutely. It is good to know whether it is celiac or not, not least so we can alert children and nephews etc.

Like you I'd never go back on gluten to check. But I might check for celiac genes.

[Collywobbles64]

I'm on a meat heavy diet, no gluten, no sugar, no seed oils. I was told that I gave my body everything it needs but still my osteoporosis got worse. I'm elimating everything that isn't animal based.

[Graceissufficient in reply to Collywobbles64]

I think going off gluten would only help (if it helps - bet it does) for the subset with gluten intolerance or celiac. Did you try eating a slice of cake or bread after a few months off gluten, and if so, how did your body respond?

When I did that I blew up to what looked like a six month pregnancy. The poo floats (too much info? But a v useful sign.)

I'm v impressed you've managed to come off sugar. You must have some determination. I hope it is rewarded as it should be.

[Collywobbles64 in reply to Graceissufficient]

I had Christmas to get through. I can’t say I noticed anything going off gluten but as it’s a grain. And therefore sugar I do try to avoid it. The only thing I can say for sure is my back pain was worse so I am going to eliminate all the things I mentioned. Not easy as sugar and seed oil are in everything unless you go whole foods only or make it yourself.

[GardenerJH]

I have one of the gene variants for celiac. Because of arthritis and pre-diabetes I migrated to a paleo diet. No dairy and no grains because all of the proteins are very similar to gluten. I knew I had inflammation from dairy(the casein protein) because I was battling pre-diabetes for years. A friend suggested giving up dairy and in 6 weeks all my numbers went to normal and I was off all medications. That was over 5 years ago. Giving up all grains has made a tremendous improvement to my arthritis. I was also suffering from Dupuytren's contracture where a surgeon told me that I was going to need surgery. Can you believe that over the last year the build up lumps in my hand have almost disappeared. The combination of collagen, COMB supplements, prunes and kiwis and bone broth reversed my osteoporosis back to osteopenia in 10 months. I am hopeful that continuing with my current diet and supplements will continue to give me improvement. The body has tremendous capability to heal itself.

[Graceissufficient in reply to GardenerJH]

Wow Gardener. That's mind blowing. You have worked hard to find answers. Did a test for celiac genes privately?

Does paleo mean no cheese as well as no milky stuff? Hugely interesting that a gene for celiac might link to pre diabetes via casein intolerance. The inflammation caused by the CI could contribute to osteop - I speculate, I imagine it's an unresearched field.

Reversed contraction? i salute you.

[GardenerJH in reply to Graceissufficient]

I think everyone should get DNA information. It can really help you. I do a lot of genealogy research as a hobby so I got my results through 23andme. You can download all your DNA and check certain genes for different issues. 23andme identifies a lot of health risks. Celiac is one, diabetes risk, macular degeneration etc.

Paleo means no dairy and no grains. I tried a lot of nondairy cheeses but now days I really only use some vegan cream cheese when cooking some dishes. Keep in mind we are the only mammal that has dairy in their diet other than a baby cow.

I think most diseases are caused by inflammation. DNA plays a big part, so does aging cells. Many in my family don’t get gray hair or very little. Gray hair is linked to copper absorption issues. I have to admit I am happy not to have gray hair but I can’t take too much credit since I know it is related to my DNA.

Your body just isn’t as efficient in absorbing the good vitamins and minerals from your food as it used to be. As a result I put a great deal of effort into making my calories count. Someone posted how your body used to convert vitamin K1 to K2 when you are younger but as we age we need more K2. That is why I have golden kiwis and prunes at breakfast.

My journey as a normal weight prediabetic and dissatisfaction with the care I got through the Joslin clinic is an interesting one. So happy that friend suggested I give up dairy.

[Graceissufficient in reply to GardenerJH]

Fabulous reply, thankyou.

[CinnamonRose in reply to GardenerJH]

I started to go grey at 19, by the time I was 23 an aquantence asked me if I was old with a young face or young with grey hair, you can imagine how that went down!! I was pretty much white by 40🤷🏻

[Lopera in reply to GardenerJH]

Hi, what do you mean by COMB supplements? Thank you.

[Graceissufficient in reply to Lopera]

I am sure Gardener will reply, but if you search "COMB supplements osteoarthritis" you will find some interesting info.. can't post a link due to rules here.

[Lopera in reply to Graceissufficient]

Thank you, that's interesting. I had never heard of the acronym.

[GardenerJH in reply to Lopera]

Here is what AI will give you. The only difference I do happened by my not recognizing that I was supposed to take 2 pills to get the 680 mg of strontium citrate so I only took half that dosage. I had such good results I didn’t feel the need to increase the dosage. I take no calcium but I make a conscious effort to eat calcium rich food like collard greens. I derind them, freeze them and add them to curry, stews, soups, casseroles etc.

—————-

The Combination of Micronutrients for Bone (COMB) study was a 12-month study that found that a combination of supplements can help increase bone mineral density (BMD) and prevent fractures:

Supplements: Participants took 2,000 IU of vitamin D3, 250 mg of DHA, 100 mcg of K2, 680 mg of strontium citrate, 25 mg of magnesium, and dietary calcium

Exercise: Participants also did daily weight-bearing exercise

Results: After 12 months, most participants saw a more than 3% increase in BMD. There were no fractures in the group taking the supplements.

The study's findings suggest that this micronutrient regimen may be as effective as some osteoporosis drugs in increasing BMD. It may also be effective for people who didn't get the results they expected from bone drugs.

—————

Hope this helps the MOTS study is very similar but the added melatonin

[Lopera in reply to GardenerJH]

Thank you, I have googled the study which is very interesting. I was taking a half dose of strontium but when I recently saw a rheumatologist, of all the supplements I take, he wasn't keen on the strontium so I stopped but I am now tempted to resume taking it.

Do you take these supplements separately or is there a combined one. I don't think I can get sufficient calcium from my diet.

I don't know what exercise is weight bearing on the spine which is where I have my problem and in fact I'm too afraid to do anything in case I do any more damage.

[GardenerJH in reply to Lopera]

Walking is a good exercise.

A lot of these doctors are confused about strontium citrate and strontium ranelate.

An AI description

Key points about strontium citrate:

Chemical structure:

Strontium citrate is a synthetically created compound where strontium is bonded with citrate ions.

Function in supplements:

It's commonly used as a dietary supplement to support bone health due to strontium's ability to mimic calcium and integrate into bone tissue.

Comparison to other strontium forms:

While strontium citrate is the most common form in supplements, other forms like strontium ranelate exist, which have different properties and potential medical applications.

[Lopera in reply to GardenerJH]

Thank you for your reply, I think I shall restart the strontium citrate. I don't think I have anything to lose. Walking is a bit of an end goal at the moment. I have 6 spinal fractures which is how I discovered the osteoporosis so at the moment cannot hold my body up so can only potter around the house using a stick.

[emersee in reply to GardenerJH]

That is amazing. What are COMB supplements please?

[GardenerJH in reply to emersee]

I answered this for someone else further in the response s. You can just google some of these studies, COMB for bone density, MOTS for bone density, prunes for bone density, collagen for bone density etc. AI give good concise responses.

[emersee in reply to GardenerJH]

Sorry for bothering you!

[CinnamonRose in reply to GardenerJH]

Can you give us an update in another 6 months time, that's impressive. How do you manage to stick to no dairy? Grains wouldn't bother me so much but I like full fat milk in my coffee and love Greek yoghurt and berries for breakfast with chia seeds, Goji berries nuts and grains mix from GrapeTree?

I'm genuinely interested in what you would eat instead

[GardenerJH in reply to CinnamonRose]

Well I started out buying a lot of vegan nondairy items. They are expensive to begin with and a lot of them are not that good. There are some good ones but I when I gave up grains I really didn’t have much use for dairy.

I still use a vegan cream cheese in casseroles, potatoes and sometimes on some crackers that I make out of almond pulp.

I have played with A2/A2 milk and kefir but gave up on them. I still get cappuccinos when out with almond or coconut milk.

My usual breakfast is black coffee with collagen. That gives me 18 grams of protein and kiwi fruit and dried prunes. If we have company I have some berries. If we go out to breakfast I always split an omelet with no cheese and hash browns with my husband. I always take my collagen with me for my coffee. I am very consistent in taking it. Sometimes I take prunes with me. Anyway I figure that gives a good dose of K2. If I know I am going to have a late lunch and need something more substantial I make myself a salad with canned salmon. There are no rules about having salad for breakfast.

There are some good coconut milk yogurts out there. I had a wisdom tooth out last month and had some for awhile I just have enough with my regular breakfasts so I don’t normally eat them.

Sometimes I make avocado ice cream. Not dairy like but nice and creamy in the summer for dessert. Mint is my favorite with a sprinkle or dark chocolate chips.

When I make casseroles I soak some cashews for half an hour. Put them in a blender with some nutritional yeast. It is quite cheesy like, especially if I add in some vegan cream cheese. There is a brand of vegan cheddar that I sometimes add a little to some dishes.

Anyway dairy is just a white liquid I don’t really have any use for it now days. I have been off it for over 5 years. I am used to it.

[CinnamonRose in reply to GardenerJH]

Thank you for your reply, it's interesting. Atm the pain I'm in I'm almost willing to do anything if it'll help!!

[Posy-White]

Hello Graceissufficient

I was first refered to a Rheumatologist for scans re Osteoporosis thirty years ago reason being very poor diet because of Food Intolerances. I had scans approximatly every 5-8 years, sliding slowly down the levels. In spite of good exercise and a diet as good as the interence allowed, I did hit the Osteoporosis level fifteen years ago.

I've had problem with Food Intolerances basically since birth, but could tolerate small amounts of many food, only I would be sick a lot. By teens I was on a totally dairy free diet, by thirty I wasn't tolerating breads, flours, rye etc, or even oats. And it slowly went down hill!

I've managed on a diet of ripe bananas, grass fed beef (lean only), Basmati rice, none farm fish, old potatoes (not new ones) and prescription 'predigested' powders. for the last twenty five years - to this I have found a vitamin D (BabyD drops) vitamin K and a calcium I can tolerate. I did have a precription general vitamin but the brand is no longer available in the UK and I haven't found a replacement yet. - I can be ill for up to ten days if I have even the smallest amount of food / vitamins I can't tolerant, so need to go at this carefully to maintain weight.

Interestingly I have seen three different consultants over the years, all said the same the poor diet wouldn't help but heredity plays a biger part in Osteoporosis - I wonder as time goes by and more people are aware of the 'effects of food that doesn't suit' if there will be a change in medical opinion as to contributing factors?

Good luck with sorting out a more suitable diet for yourself.

Posy White

[Graceissufficient in reply to Posy-White]

Gosh, how diligent you have been, and how constrained. As for osteop being "inherited" I wonder what that means? Some of the linked conditions, eg celiac are inherited - extreme intolerances I can believe are inherited. But is there a gene? Or are they talking about a "grandmother effect" where poverty can have effects to the third generation? Do they even know?

My mother had Paget's disease of bone which seems to be genetic plus an environmental influence. Her bones were "like cheese" in old age, but no osteop. She was in deprivation as a child, a picky eater and also hungry often,

My grandmother and female ancestors would have had poor diets, working as servants.

My guess is that deprivation in early life is key to later osteop, except where there is another clear cause.

[Southerngirl2787]

I have been GF for decades...with far and few between gluten treats. I can tell you that being GF makes a huge difference for me with inflammation labs, gut health, as I immediately hit the potty with urgency after consuming any gluten, and for the next few days as well. I also immediately feel the bloat if I have a few bites of anything with gluten, sometimes it's worth it, but I've lost the taste and it's never as good as I thought it would be. We also do not consume any other grains...since so many can be cross-contaminated. I am autoimmune, thyroid, Raynaud's, Lupus, AS, and osteoporosis from a parathyroid tumor gone rogue for years. I feel best GF, grain free, sugar free and seed oil free. It's not overnight but at about the 6 month mark, you realize how much better you are doing.

[Graceissufficient in reply to Southerngirl2787]

Very helpful, thank you.