Strictly Gluten Free For 3 Years But Still Have Multiple Vitamin Deficiencies And Feeling Really Tired All The Time

[imagine22]

I have coeliac disease diagnosed by blood test and biopsy. 1 year after being gluten free I did a repeat blood test and it came back normal indicating my diet was properly gluten free (as it should be!)

I have been strictly gluten free for over 3 years now but Im feeling really tired and weak all the time. I had blood tests done and I was vitamin D deficient, iron is low outside of normal and my B12 is low but just inside normal (where as previously it was double what it is now). My vitamin D is supplemented but I need 5 ostelin a day to keep it in the normal range or it just gets deficient again despite the fact Im really white and outside a lot! I have B12 injections every 4 weeks too.

I suspect my absorption is not repaired properly despite my strict gluten-free diet. I didnt have a 2nd biopsy after being gluten-free for 12 mths as I was pregnant then, so I dont know if its properly repaired.

Unfortunately I cant take multivitamins!!! after a week of being on them I get nauseous, weak, and progressively worse diarrhea the longer Im on the vitamins (it takes a week of being off them to get better again). Ive tried lots of different types and even kids vitamins and they all make me really ill. Why is this? before I was diagnosed with coeliac I could take vitamins without any issue???

I also have osteoporosis at age 30! I had osteopenia at diagnosis 3 years ago and then my last bone density this year showed it was much worse and I have osteoporosis (I had been on steriods for a month and had heparin for 9mths during a very bad pregnancy (severe hyperemesis) so I assume that is the cause of the bone density loss but the malabsorption of vitamin D and calcium wouldnt have helped!)

What can I do about the absorption isssues? why cant I take multivitamins? Where should I go for help ie endocrinologist or gastro specialist etc?

thank you very much, my GP is just patching up one issue after another but the cause of my problems is unknown and I just keep getting worse.

[GFinDC]

gluten-free is good, but perhaps you need to look at other food intolerances also? Dairy is one that pops up often on the boards as a problem for people. There may be something besides gluten causing your current issues. Maybe this is a good time to look for another food that you may be reacting too.

[mushroom]

What can I do about the absorption isssues? why cant I take multivitamins? Where should I go for help ie endocrinologist or gastro specialist etc?

My best bet would be an endocrinologist, for what it's worth.

[FarmCat]

Your low iron and B12 could possibly be something called pernicious anemia (PA). That is the inability to absorb B12 from food. This malabsorption wouldn

[Fiddle-Faddle]

If you have been on acid blocking medication (Prilosec, Zantac, Nexxium, or even Tums) for a long time, that could cause B-12 deficiency. Apparently, you need stomach acid to absorb B-12. Many of us with celiac have had reflux issues, prompting our doctors to put us on long-term acid blockers.

In Japan, the lowest acceptable levels for B-12 is 550. They also have a significantly lower incidence of Alzheimer's there--and Alzheimer's seems to have a strong connection with B-12 deficiency.

There does seem to be a sub-clinical B-12 deficiency, where levels are low-normal (by US standards), but symptoms are present. In fact, according to this, 50% of those with B-12 deficiency test in the normal range:

Open Original Shared Link

"Vitamin B12 (cobalamin) deficiency is a common cause of macrocytic anemia and has been implicated in a spectrum of neuropsychiatric disorders. The role of B12 deficiency in hyperhomocysteinemia and the promotion of atherosclerosis is only now being explored. Diagnosis of vitamin B12 deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels. A more sensitive method of screening for vitamin B12 deficiency is measurement of serum methylmalonic acid and homocysteine levels, which are increased early in vitamin B12 deficiency. Use of the Schilling test for detection of pernicious anemia has been supplanted for the most part by serologic testing for parietal cell and intrinsic factor antibodies. Contrary to prevailing medical practice, studies show that supplementation with oral vitamin B12 is a safe and effective treatment for the B12 deficiency state. Even when intrinsic factor is not present to aid in the absorption of vitamin B12 (pernicious anemia) or in other diseases that affect the usual absorption sites in the terminal ileum, oral therapy remains effective."

Are you on a sublingual B-12 supplement between the monthly injections?

The real experts are at www.perncious-anaemia-society.org, as FarmCat mentioned above.

[pele]

You may have bacterial overgrowth of the small intestine. Check out this article from celiac.com

https://www.celiac.com/articles/21768/1/Res...ease/Page1.html

Lactose intolerance and pancreatic insufficiency are also common reasons why people fail to heal on gluten-free diets, according to Dr. Peter HR Green in his book "Celiac Disease: a Hidden Epidemic".

[beachbel]

I would suggest a couple of things you might try. First, if it has been awhile you might want to see your GI about a blood test and possibly an endoscope to check up on your celiac disease since you are having so much absorption issues still. Another really common thing in celiac disease is hypothyroidism which makes you feel really tired. It just takes a blood test to check for it and can make a huge difference in how you feel. Good luck.

[RiceGuy]

As far as I understand it, the B12 shots are supposed to get around Pernicious Anemia. So if your levels are still low, I'd be surprised if the cause was lack of Intrinsic Factor, since that's to begin the breakdown and absorption of B12 from food.

I think the suggestion of checking your folate/folic acid is a good idea, but perhaps for different reasons. If your homocysteine level is elevated, it might be taking up a lot of the B12 and folate to break it down. But I wonder if the liver is involved with the trouble your having.

One thing I know assists in the absorption of nutrients, is magnesium. It is also involved with the process of getting calcium into bone. Just calcium and vitamin D isn't enough. Incidentally, if your vitamin D isn't D3 (cholecalciferol), you should switch. I've read that prescription vitamin D is often D2, which is an inferior synthetic form.

There is a condition called Refractory Sprue, but if I recall correctly, that's where the antibodies continue to be produced. Since you appear to indicate that your antibodies are down, that would seem to rule it out. Perhaps someone else here can verify my recollection of this.

The intestinal yeast overgrowth is another possibility, and it is one which most doctors don't believe in, thus aren't checking for. There are a number of threads on this board about it, which should give you a better idea if it might apply to you.

[sophos]

Did you get a course of B12 loading doses? If you are low, you often need a LOT of B12, such as 5 shots in one week followed by three shots a week for two weeks, then two shots a week for two weeks, then weekly or monthly depending on your own needs. Nearly all of the B12 you receive in a shot is processed out of your body within 48 hours with some remaining in your blood and liver. If your stores in the liver are low to begin with, it will take some time to top them up. This is why a regime of both shots and sublinguals can be good - you need an injected form of hydroxocobalamin, of which processing involves a pathway that includes the liver, so you're replenishing liver stores. Adding some methylcobalamin sublinguals provides a lot of directly available B12. Also if your thyroid function is low (whether temporarily or chronically) it will deplete vitamin and mineral stores.

You can ask for your holotranscobalamin (also called transcobalamin II) to be tested. That will show you how much of the B12 is actually getting in to your cells, as holotranscobalamin (HTC) is the B12-saturated protein that is delivered to all your cells. One reason I was diagnosed with pernicious anemia was because my HTC came back deficient while my serum B12 was "normal".

One thing I know assists in the absorption of nutrients, is magnesium. It is also involved with the process of getting calcium into bone. Just calcium and vitamin D isn't enough. Incidentally, if your vitamin D isn't D3 (cholecalciferol), you should switch. I've read that prescription vitamin D is often D2, which is an inferior synthetic form.

If you are taking vitamin D supplements, not only should they be D3 as RiceGuy said, but should also be in an oil base. The D3 in dry form, such as the Ostevit tablets, or even some pills that look like gelcaps but are just a coating on the tablet, are not absorbed nearly as well as D3 in oil. You should also take D3 with a meal that has fat in it, and not too high in fiber. Same goes for all the fat-soluble vitamins like A and E, too. I take two of the Now Foods brand 5,000IU D3 gelcaps per day for my D deficiency. They are in olive oil, so safe for most. Some other brands use wheatgerm or soy oil.

D2 isn't necessarily synthetic, but it's inferior for humans because it's the form of vitamin D made by plants and fungi and also invertebrates. D3 is the kind made by mammals and other vertebrates so it works a hell of a lot better. That's why the vitamin D in cow's milk (if you can tolerate it) and other animal products is better and more bioavailable than the vitamin D found in vegetables. If you drink soy or rice milk that's supplemented, check what kind of D is put in it.

(I also find it somewhat bemusing that low or non-fat milk is supplemented with extra calcium as a selling point. You need the level of fat in whole milk for the vitamin D to be absorbed so you can use the calcium...)

[prayin4achange]

gluten-free is good, but perhaps you need to look at other food intolerances also? Dairy is one that pops up often on the boards as a problem for people. There may be something besides gluten causing your current issues. Maybe this is a good time to look for another food that you may be reacting too.

Hello. I see that there are a lot of things you are unable to eat. I have a lot of problems and Im almost positive it is mostly caused by foods. How did you come to find out what you could and couldnt eat and what CAN you eat?? I'm 25 and pray it doesnt take till I'm 35 to feel better thank u.

Jenn

[dilettantesteph]

If you look at this gluten free forum thread:

www.celiac.com/gluten-free/index.php?showtopic=57275&view=getlastpost

It looks like a negative blood test doesn't necessarily mean that your diet is entirely gluten free. You might want to look into that.