Poor Absorption Of Nutrients When On gluten-free Diet?

[frec]

I really need some answers. I was diagnosed in 2002 and have stayed faithfully on a gluten-free diet ever since. I am basically pretty healthy, and I am very grateful. But I have spent the last five years dealing with further health problems that were due to ongoing poor absorption. I have been on calcium/magnesium and vitamin D3 supplements, for instance, yet my blood tests show I am still low on vitamin D and my calcium absorption is still poor. Now I have osteoporosis. I've read that sometimes celiacs have ongoing absorption problems even after going on the diet. I asked my "Go on a gluten-free diet and go away" gastroenterologist about it, and he said there was no such thing. Has anyone else had this problem? Has anyone spoken to doctors who have heard of it? I am on about a dozen (gluten-free) supplements now.

[Ursa Major]

Are you still consuming dairy? The fact is, that dairy doesn't give you calcium, but rather causes you to lose it. Studies have shown that nowhere in the world is the osteoporosis rate as high as in North America, where also dairy consumption is the highest in the world. Dairy leeches calcium out of your body.

Dairy can also cause blunting of villi, and therefore malabsorption. So can soy.

I suggest you eliminate dairy and soy from your diet in addition to gluten to see if it makes a difference.

[trents]

The dairy thing is very controversial. The tallest people in the world are the Dutch. I asked a Dutchman about that one time and he told me he attributed it to the fact that the Dutch consume a lot of dairy products. Take it for what its worth. I realize it's anecdotal. Good absorption of calcium depends on an acidic environment in the gut and the irony is that throwing too much calcium (an acid neutralizing mineral) into the gut is counterproductive. This is also a problem when using medications to control acid reflux, a common problem among celiacs.

frec, how old are you? An article that appeared in the Celiac.com newsletter in the past year reported on a small study with confirmed celiac pts. concerning micro villi recovery. The study found that younger celiacs (early 30's and younger) experienced excellent healing of the micro villi when going gluten free while older ones did not. Another variable in micro villi recovery, and probably related to the age one, is how long did the person go undiagnosed and how extensive and deep is the damage done to the small bowel? To put it another way, the latest research is showing that the former assumption of the medical community that mucosal damage is completely reversed by going gluten-free is not correct. Most docs do not have the time or interest to keep up with the latest research unless its their specialty or a very common health condition which they deal with day in and day out.

Steve

[stargazer]

Maybe you have refactory celiac that doesn't respond completely to the gluten free diet. This would explain why your nutrient absorption isn't improving. If you have a type of refactory celiac, then your intestines wouldn't heal.

[frec]

Hmm. I am 51 and gave up dairy even before I gave up gluten. I still eat soy though--I'll have to read up on that because it is a major food for me now. I take my calcium with digestive enzymes so that should help. (The digestive enzymes seem to help GERD a lot more than the Prevacid, etc. did.) At least now I know I am not crazy to think I am still not absorbing, regardless of what my gastro said. Thanks for the help!

[SL2007]

I also seem to have trouble with poor absorption. One thing I tried for the last 2 weeks, which seems to be helping, is I puree most of my food before I eat it. For example, I take regular chicken soup and I puree it in a blender before I eat it. I have been eating a lot of smoothies, a lot of pureed soups, apple sauce. I also generally eat my food warm, that seems to help digestion too. The overall concept is to eat the sort of food a baby would eat before it has any teeth.

If other people have other strategies, I would love to learn about them. Thank you.

[lyndao]

I also seem to have trouble with poor absorption. One thing I tried for the last 2 weeks, which seems to be helping, is I puree most of my food before I eat it. For example, I take regular chicken soup and I puree it in a blender before I eat it. I have been eating a lot of smoothies, a lot of pureed soups, apple sauce. I also generally eat my food warm, that seems to help digestion too. The overall concept is to eat the sort of food a baby would eat before it has any teeth.

If other people have other strategies, I would love to learn about them. Thank you.

yes, that makes sense to me. I am going to try it. I have only been on diet 3 weeks, seen many changes, like no leg spasms, no rashes, eyes clearing,no constipation, no numbing/tingling etc. But continue to be bloated, more fatigue. I am keeping a food diary and started soy milk, and I am questioning Soy, because some symptoms (leg jerks at night, bloating reocurred) I also wander about my shampoos. So, I have 2 products that I will eliminate, first the shampoo/conditioner. Waiting for blood tests, BUT know I have been misdiagnosed with MS/IBS for over 12 years. I had rashes as a kid in the 6o's. I will be 50 next year and hope and pray that my gut will heal. I also believe I am not absorbing nutrients. Although, my eyes got better in 2 weeks, now not dry or red, which means lack of Vitamin A. I bought the new manual Recognizing Celiac Disease by Cleo Libonati, RN which is my guide and bible, since I am going alone, right now no dietian, no GI, NO neurologist. lynda lube

[SL2007]

I hope you figure out what works for you. Celiac disease appears to manifest in different ways in different people. Another thing I am trying which seems to be helping is I drink a mango smoothie with almost every meal. The smoothie is made by blending

1/2 cup orange juice

1/2 cup soy milk (if you are avoiding soy I believe you can substitute yogurt; if you wish to avoid dairy too, then experiment - perhaps just orange juice will work?)

1 fresh mango cut up

I blend everything (puree setting) and then drink it. I read mango has an enzyme that helps break down protein. Papayas and pineapples also have enzymes that break down proten but for me personally mangos work best. It really seems to help.

[Finn]

I really need some answers. I was diagnosed in 2002 and have stayed faithfully on a gluten-free diet ever since. I am basically pretty healthy, and I am very grateful. But I have spent the last five years dealing with further health problems that were due to ongoing poor absorption. I have been on calcium/magnesium and vitamin D3 supplements, for instance, yet my blood tests show I am still low on vitamin D and my calcium absorption is still poor. Now I have osteoporosis. I've read that sometimes celiacs have ongoing absorption problems even after going on the diet. I asked my "Go on a gluten-free diet and go away" gastroenterologist about it, and he said there was no such thing. Has anyone else had this problem? Has anyone spoken to doctors who have heard of it? I am on about a dozen (gluten-free) supplements now.

Frec, it would be helpful to know what other supplements and special foods you have tried for this problem, as well as what other treatments you have tried besides just seeing the doctor who you referred to as a "Go on a gluten-free diet and go away". Depending on what you have tried/not tried I may have some very helpful recommendations.

Take care, and best of luck.

[itchygirl]

Durn it, according to your gastro I don't exist. I feel real but I must not be here.

One thing you may wish to consider is pancreatic insufficency. This problem can keep you from absorbing fat soluble vitamins like D. I have this problem your poor gastro is not able to concieve of and have to take 15000 iu of D twice a week to keep my levels up. Some people need shots (of D). Of course, since I don't exist....I also have to take prescription digestive enzymes. Scroll down to Pancreatic Disease, at the bottom. Once the pancreas is damaged, it never recovers. So even if your intestine heals up, if your pancreas is shot, its shot....

Open Original Shared Link

oh goodie, this is a nice link

Open Original Shared Link

that gastro needs to keep up with current information

Historically, after diagnosis and the introduction of a gluten free diet, coeliac disease patients who experienced ongoing gastrointestinal symptoms were frequently suspected of failing to comply with their dietary restrictions.

However, evidence from a new study shows that around one third of these patients actually have a severe pancreatic exocrine insufficiency, which can be successfully managed by enzyme replacement therapy. This important finding can help substantially improve the quality of life of these patients.

[frec]

People on this forum are so helpful! OK, here are my supplements: vitamins A, B, C, D3 (5,000 IU a day), and K. Calcium apatite (has phosphorus) and magnesium. Fish oils twice a day. None of my doctors have mentioned pancreatic insufficiency before, but in December my naturopath gave me digestive enzymes when I was unable to digest all the calcium. One digestive supplement has betaine hydrochloride, pancreas extract, pancreatin, pepsin, and spleen extract, and the other has papain, protease, amylase, lipase, lactase, and bromelain. I haven't been retested on anything since starting on the digestive enzymes; it will be interesting to see if there is a change. Meanwhile I am printing out those pancreas articles for my doctor (not the gastro--I'm getting a new one).

I quit soy in December. It has been hard finding replacements for soy based foods. I eat a lot of homemade vegetable soups, fruit and hemp shakes, rice, chicken, beans, and nuts.

Thanks for all the advice!

[pele]

I started on Digest Gold, a strong enzyme supplement, after reading in Dr. Peter Green's book Celiac Disease, a Hidden Epidemic, that pancreatic insufficiency can be a reason for not getting well on a gluten-free diet. Like you, I remained low on Vit D despite heavy supplementation.

The day after I took the enzymes for the first time, I noticed a dramatic improvement in my digestion (should I go into detail?), and within a week, I gained weight for the first time in years. I sure hope I am now absorbing some of those fat soluble vitamins and Omega-3s that were going straight into the toilet!

If I forget to take the enzymes, things once again deteriorate. I guess if I want to go on a diet, I just stop the enzymes.

My GI doc (self-described celiac expert) scoffed at this and said the pancreas is pretty tough and only rarely can't do its job.

I hope digestive enzymes are working for you, too.

[Finn]

Frec,

I'm definitely no expert, but a lot of evidence suggests that the quality of supplements one takes is KEY to any absorption (you probably already know all that, if so then bear with me). So, if you're not taking quality supplements, you're very likely wasting money and not absorbing much at all from cheap synthetic vitamins. A really good brand I have found is called New Chapter. Their supplements are all whole food-based, and probiotically formed nutrients, so tehcnically they are FOOD, not supplements, which = much better absorption rate. It's hard to bite the bullet sometimes and spend the extra money, but if you can swing it with your budget it is very worth it.

An amazing supplement is called Body Balance. Here's a link to the webpage: Open Original Shared Link

This stuff is expensive as well, but it's probably the most easily absorbable whole food supplement out there. It is definitely worth a try if you're not completely strapped for cash. Body Balance has LOADS of vitamins/aminoacids/glyconutrients, and it doesn't depend on the consumer having a sturdy digestive tract. Many people take this in place of any other supplements.

Another recommendation (which you may have already tried) is a high-quality probiotic. The best I've ever found is called Bio-k Plus. It is miles ahead of any other probiotic (and yes, it is expensive too, but worth it.) It is essentially little servings of super yogurt, conatining about 50 times the amount of live bacteria that yogurt has. They have a dairy based supplement as well as soy based if you're lactose intolerant, although most lactose intolerant people have no trouble with it because it is fermented (aka pre-digested). You can get this stuff from Whole Foods or a good health store (or at least get them to order it for you).

Another thought: homeopathic cell salts work well as restorative healers and balance the body. Might be worth looking into.

One more thing: Homemade broth from animal bones (turkey, chicken, beef, fish) is an excellent source of very easy to absorb minerals (if you're not a vegetarian). Here's a link:

Open Original Shared Link

Since the body works as one whole unit, we can help everything out by doing "little" things for it (i.e. high quality supplements). They will strengthen the overall system, even if they don't sound like a silver bullet cure, and get oneself closer to wellness.

Best of luck and I hope you get well. (and sorry if this is all stuff you've heard a thousand times before.)

Finn

[frec]

Thank you Finn and pele! I took notes on your recommendations, and I am going to buy that book.

[itchygirl]

.My GI doc (self-described celiac expert) scoffed at this and said the pancreas is pretty tough and only rarely can't do its job.

I just love these docs that have not read a research paper since they graduated in 1972...

Is exocrine pancreatic insufficiency in adult coeliac disease a cause of persisting symptoms?Leeds JS, Hopper AD, Hurlstone DP, Edwards SJ, McAlindon ME, Lobo AJ, Donnelly MT, Morley S, Sanders DS.

Department of Gastroenterology, Sheffield Teaching Hospitals Trust, Sheffield, UK. jsleeds@hotmail.com

BACKGROUND: Patients with coeliac disease may have diarrhoea despite being on a gluten-free diet. AIM: To assess whether exocrine pancreatic insufficiency causes persisting symptoms compared with controls, we determined whether pancreatic enzyme supplementation provided symptomatic benefit in coeliac patients with chronic diarrhoea.... (snip). CONCLUSIONS: Low faecal elastase is common in patients with coeliac disease and chronic diarrhoea, suggesting exocrine pancreatic insufficiency. In this group of patients, pancreatic enzyme supplementation may provide symptomatic benefit.

[lizard00]

I didn't see this already mentioned, or maybe you're already doing it, but I thought I would mention it. Even if you are taking a high quality supplement, our bodies can only absorb so much calcium at one time. When my mom had her bone scan done (she had osteoporosis) the nurse there told her to cut her supplement and take it three times a day (rather than once) to make sure she actually absorbed all of it. And of course, not with caffeine.

She went back for her bone scan a few months ago, she know has osteopenia. It's still not where they want it, but it's an improvement. At 58, she created some bone density. Wahoo!

[greendog]

I really need some answers. I was diagnosed in 2002 and have stayed faithfully on a gluten-free diet ever since. I am basically pretty healthy, and I am very grateful. But I have spent the last five years dealing with further health problems that were due to ongoing poor absorption. I have been on calcium/magnesium and vitamin D3 supplements, for instance, yet my blood tests show I am still low on vitamin D and my calcium absorption is still poor. Now I have osteoporosis. I've read that sometimes celiacs have ongoing absorption problems even after going on the diet. I asked my "Go on a gluten-free diet and go away" gastroenterologist about it, and he said there was no such thing. Has anyone else had this problem? Has anyone spoken to doctors who have heard of it? I am on about a dozen (gluten-free) supplements now.

Not geting enough Vit D will impair Calcium absorbtion and your gastroenterologist is wrong. When your gut gets messed up with gluten you don't absorb your vitamins and minerals. I was getting a Chelation IV yesterday and the young college aged girl next to me was getting a Vitamin/Mineral IV. Reason being she had Fiberomyalgia and Cronic Fatigue Syndrome and they found out it was caused by her becoming intolerant or allergic to gluten over the past year. Until she found out about the gluten, she continued to damage her gut and digestive processes. They did extensive blood work and some vitamins and minerals (i.e. Iron) were so low they could hardly detect them.

[April in KC]

Have you looked into Eosinophilic Disorders, particularly eosinophilic gastroenteritis?

My oldest son and I were diagnosed with Celiac at the same time, both with positive blood work. Both of us went gluten free at the same time. I steadily healed up over 4-6 months, while he showed a great deal of behavioral improvement but his GI symptoms persisted.

Finally, after about a year had passed and he was still having pain and not gaining weight well. He had some vitamin deficiencies. I took him back to the GI, and he scoped him (endoscopy and colonoscopy) and took lots of biopsies.

Turns out my son has Eosinophilic Gastroenteritis (EGE) in addition to Celiac Disease. The EGE causes a protein-losing enteropathy that is not all that differen than Celiac Disease.

It's a microscopic condition - so not visible to the naked eye on endoscopy. Doc has to look for it and count the number of eosinophils per high powered field under a microscope. Treatment approaches vary - from various types of medicines to trying to detect and avoid food triggers, which tend to be more numerous and less predictable than gluten.

I just wanted to let you know that it is really possible to have TWO conditions that both cause similar symptoms. If not EGE, then look at other malabsorption conditions, other enteropathies. Find a doc who knows what eosinophilic disorders are and who has diagnosed them before. You can look at the APFED website for info.

April

[Lizz7711]

I really need some answers. I was diagnosed in 2002 and have stayed faithfully on a gluten-free diet ever since. I am basically pretty healthy, and I am very grateful. But I have spent the last five years dealing with further health problems that were due to ongoing poor absorption. I have been on calcium/magnesium and vitamin D3 supplements, for instance, yet my blood tests show I am still low on vitamin D and my calcium absorption is still poor. Now I have osteoporosis. I've read that sometimes celiacs have ongoing absorption problems even after going on the diet. I asked my "Go on a gluten-free diet and go away" gastroenterologist about it, and he said there was no such thing. Has anyone else had this problem? Has anyone spoken to doctors who have heard of it? I am on about a dozen (gluten-free) supplements now.

In addition to pancreatic enzymes, the betaine and Hcl you are taking may help if you have low stomach acid--this will cause malabsorption. A good book on this is "Why Stomach Acid is good For You" by Jonathan WRight.

Also, concerning New Chapter's supplements. I love the company too...but can't take their stuff anymore becuase it's all processed in fermented soy. They also don't list products as being gluten or dairy free, but I haven't called the company yet to check. The gluten, casein, and soy proteins are SO similar in structure which is why the body attacks all 3 often for gluten sensitive people with leaky guts....so i'd avoid all 3 like the plague until you're healed more thoroughly. Also, beans and nuts will be kinda rough on your intestines as they're hard to digest for regular people.

Good luck!

Liz

[AnnaK]

Some supplements are amino-based. I find I do not absorb amino-acids at the moment and as a result flush all amino-based supplements straight through. I do absorb fatbased supplements such as evening primrose and zinc, however.

Perhaps you can find some correlation too?

Absorbing amino acids starts with good stomach acid to break the proteins (enhance your HCl or take a bit of sauerkraut-juice with you meal). After that one needs good enzymes (either your own or in pill-form) to break the proteins even further into amino acids. Then there must be some good bit of intestine to absorb the nutri

[Teresa H]

I really need some answers. I was diagnosed in 2002 and have stayed faithfully on a gluten-free diet ever since. I am basically pretty healthy, and I am very grateful. But I have spent the last five years dealing with further health problems that were due to ongoing poor absorption. I have been on calcium/magnesium and vitamin D3 supplements, for instance, yet my blood tests show I am still low on vitamin D and my calcium absorption is still poor. Now I have osteoporosis. I've read that sometimes celiacs have ongoing absorption problems even after going on the diet. I asked my "Go on a gluten-free diet and go away" gastroenterologist about it, and he said there was no such thing. Has anyone else had this problem? Has anyone spoken to doctors who have heard of it? I am on about a dozen (gluten-free) supplements now.

Hi Frec,

I have the exact same problem you describe--osteoporosis in my mid-forties and very low calcium absorption, even though I've been Gluten-free for 7 years, religiously. Plus, now, I have tooth enamel problems--almost every tooth has enamel chipping away. It's very scary. I'm thinking of going on the Specific Carbohydrate Diet (see Elaine Gottschall's amazing book) for a while, which is supposed to help Celiacs who aren't helped by the Gluten-free diet, but it's a pretty difficult diet. Please let me know if you find out anything. My naturopaths and holistic dentist are all stumped. Thanks! -- Teresa, alias the Wordsmith. You can write me at wordsmithink@msn.com if you prefer.

[CuriousOne]

I wish there were actually people doing studies to see how dairy blunts villi etc etc. Anyone have any real links? As much as I want to believe it, where is the proof???

I seem to find, that if I eat dairy...but I drink wine everyday...the wine seems to flush out anything that is gooey in my intestines. But how can I prove that? Well its just from observing myself.. I don't know.

[mftnchn]

Does anyone know what are the best recommended tests for checking for all areas of absorption? I am having a lot of problems with this too, and want to make sure that I am covering the bases.

Also what tests are insurance covered? I've had several but insurance kicked them out.

[CuriousOne]

Here is something interesting!

I was googling a bit and came across a few studies they did on cows.

Here is one:

Open Original Shared Link

Anyways, basically (from what I read) it appears they found feeding the cows soy damaged the villi greatly. Also feeding them just a milk-substitute with casein caused the villi to change, although not necessarily damaged completely.

I can't wait for more of these studies to come out.

But with that particular link I posted, after they started feeding the calves the normal milk (what type of milk? raw? pasteurized?) the villi returned to normal looking villi within 2 weeks.

Thats really good news! Of course these are baby cows too...

[KProc]

I think you should find a new doctor!!!!!!!!!!!!!!!!!!!!!!!!!!

What a bum.

My first GI doc told me to look on the internet to learn about what the gluten-free diet is. Then when I told him it's harder than he thinks, he said "well that depends on how gluten-free you want to be" And if that weren't enough, when I came in to his office desperate for help because I felt so sick he called me the "bane of his existence"

FABULOUS!

Needless to say I got a new doc that's great and knowledgeable of Celiac...and OH actually cares. And he also knows of my old doc - I told him all about his brilliant comments and new doc and his colleagues laugh at how dumb he is.

CANT BELIEVE I SURVIVED THE ENDOSCOPY AND COLONOSCOPY HE PERFORMED!

Go shop around for some new people...what area are you in?