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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

For Those Who Are Grain Free And Low To No Beans/nuts
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18 posts in this topic

So, for a little while now, I've been getting headaches with certain foods. Not gluten related, just crummy. These have been getting worse, to the point that freaking WATER was giving me headaches.

I've figured out what has been causing the headaches, it's been tested and confirmed by the doc, and it may be of some relevance for super-sensitives, so I pass it along.

I am severely molybdenum deficient. This is pretty rare, I understand, because humans don't need much of this and we get plenty in our usual diets. However, grains, beans, and nuts are some of the main sources in our diets, so for those of us who have little to none of these, we may run the risk of becoming deficient in this mineral. For example, my headaches started worsening when I dropped legumes due to allergy issues.

Molybdenum levels are not usually tested for (rare and all), so it's unlikely to be discovered unless you ask for the test.

The reason it can cause issues is because molybdenum is needed to create Molybdenum Cofactor. This is used to make 3 important enzymes: sulfite oxidase, xanthine oxidase, and aldehyde oxidase.

Sulfite oxidase converts sulfites to sulfates, so without it, you will become mildly to severely sulfite intolerant/sensitive. Which can be a problem for, say, water with high sulfite levels, many processed foods, many injected medications, eggs, garlic, onions, and more.

Xanthine oxidase is used to metabolize purines, which can be found in many fish, organ meats, beef, and others.

Aldehyde oxidase takes care of aldehydes, which are organic compounds that add the scent for many volatile essential oils, such as what we might find in herbs.

With all three of these depending on molybdenum cofactor, a molybdenum deficiency can have a broad effect. And as I said, with many of us super-sensitives going grain free, and often legume and nut free, it's may be difficult to get enough of this mineral unless your water supply has higher levels. So for anyone getting headaches or other problems with bottled water, injected meds, or a wide range of foods, it might be worthwhile to ask to be tested for this.

I haven't seen any signs that this affects super-sensitivity in and of itself, but there's a little part of me that's crossing my fingers and hoping. If my body's sensitivity levels could chill the heck out once I get my molybdenum levels back up, that would be AWESOME. :D I'll let ya'll know how it goes.

A warning!

If anyone suspects this could be an issue, please check with a doctor and get tested. Supplementing for this vitamin when you are not deficient can be dangerous, because Molybdenum toxicity is a definite risk. It doesn't take much to reach levels that are too high.

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That is a rare deficiency, TH. Hope you get it straightened out ASAP. :unsure: The doc who figured that one out for you deserves big kuddos! :) and he should let someone know because apparently, there are not many documented cases.

From :The Linus Pawling Institute

Dietary molybdenum deficiency has never been observed in healthy people (2). The only documented case of acquired molybdenum deficiency occurred in a patient with Crohn's disease on long-term total parenteral nutrition (TPN) without molybdenum added to the TPN solution (6). The patient developed rapid heart and respiratory rates, headache, night blindness, and ultimately became comatose. He also demonstrated biochemical signs of molybdenum deficiency, including low plasma uric acid levels, decreased urinary excretion of uric acid and sulfate, and increased urinary excretion of sulfite. Thus, the patient was diagnosed with defects in uric acid production and sulfur amino acid metabolism. The patient's clinical condition improved and the amino acid intolerance disappeared when the TPN solution was discontinued and instead supplemented with molybdenum (160 mcg/day) (6).

Current understanding of the essentiality of molybdenum in humans is based largely on the study of individuals with very rare inborn errors of metabolism that result in a deficiency of the molybdoenzyme, sulfite oxidase. Two forms of sulfite oxidase deficiency have been identified:

Isolated sulfite oxidase deficiency: only sulfite oxidase activity is affected.

Molybdenum cofactor deficiency: the activities of all three molybdoenzymes are affected.

Because molybdenum functions only in the form of the molybdenum cofactor in humans, any disturbance of molybdenum cofactor metabolism can disrupt the function of all molybdoenzymes. Together, molybdenum cofactor deficiency and isolated sulfite oxidase deficiency have been diagnosed in more than 100 individuals worldwide. Both disorders result from recessive traits, meaning that only individuals who inherit two copies of the abnormal gene (one from each parent) develop the disease. Individuals who inherit only one copy of the abnormal gene are known as carriers of the trait but do not exhibit any symptoms. The symptoms of isolated sulfite oxidase deficiency and molybdenum cofactor deficiency are identical and usually include severe brain damage, which appears to be due to the loss of sulfite oxidase activity. At present, it is not clear whether the neurologic effects are a result of the accumulation of a toxic metabolite, such as sulfite, or inadequate sulfate production. Isolated sulfite oxidase deficiency and molybdenum cofactor deficiency can be diagnosed relatively early in pregnancy (10-14 weeks' of gestation) through chorionic villus sampling, and in some cases, carriers of molybdenum cofactor deficiency can be identified through genetic testing. No cure is presently available for either disorder, although anti-seizure medications and dietary restriction of sulfur-containing amino acids may be beneficial in some cases (7).

http://lpi.oregonstate.edu/infocenter/minerals/molybdenum/

Feel better soon. Headaches are the worst!

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That is a rare deficiency, TH. Hope you get it straightened out ASAP. :unsure: The doc who figured that one out for you deserves big kuddos! :) and he should let someone know because apparently, there are not many documented cases.

Heh...this falls in the same category as my celiac disease: patient diagnosed, doctor confirmed. ;-)

I happened to come across a site mentioning headaches and bottled water, due to sulfite content. And the only bottled water that had low sulfites coincided with the only bottled water that I could tolerate.

So started looking, found that many people with sulfite sensitivity had some relief if they supplemented with molybdenum or vitamin B's, and then noticed what sources were for molybdenum and realized I wasn't eating any of them. Found a way to get straight sulfites and make a very diluted solution, tried it, had a killer headache of doom. So I asked for the test at my next doctor appointment.

My MD(just a general practitioner MD) has been great. So much weird stuff seems to go on with me that he doesn't even pause, just goes and orders the tests after I explain my reasoning to him (he had to look this one up because he'd never ordered it before). So far, I've been right in my 'guess-diagnosis' more times than not...don't know if that's a good thing or not. ;)

It sounds like he's been taking note, because more than once when a test comes back positive, he shakes his head and wonders out loud how many people have this and are being missed because it's almost never tested for. He seems like a doctor who really incorporates anything new he comes across into his future diagnoses, so at least I can feel better knowing that if anyone else comes along with this issue, he'll be more likely to catch it. :-)

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Heh...this falls in the same category as my celiac disease: patient diagnosed, doctor confirmed. ;-)

Ditto for me. Long struggle, but I was persistent.

Good thing or I'd probably be dead. Or wheelchair-bound and insane by now. :rolleyes: It was that bad.

My new GI is appalled by what happened to me---to any long- unDXed celiac. He says there is no excuse for that now.

As a result of malabsorption, we can be deficient in any number of vitamins, minerals, amino acids, etc.

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Curious.

For anyone worried about their intake, WHFoods.org lists a number of sources including summer squash (18% dv), eggs (11%), carrots (8%), romaine lettuce (7.5%), cucumbers (7%), bell peppers (6%), and a bunch more. The peas and beans have more like 200% of dv, as Shauna said.

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For anyone worried about their intake, WHFoods.org lists a number of sources including summer squash (18% dv), eggs (11%), carrots (8%), romaine lettuce (7.5%), cucumbers (7%), bell peppers (6%), and a bunch more. The peas and beans have more like 200% of dv, as Shauna said.

From what I understand, part of the issue can be that, because Molybdenum is a mineral, it has to be absorbed from the soil. So if the soil is in an area that has had a lot of farming and this particular mineral has been depleted, or if the soil is naturally low in this mineral, the veggies may not have lower amounts of it. :-( I've heard that this can be an issue for Iodine in veggies, as well.

Interesting to hear about the veggie sources, too, because summer squash, lettuce, cucumbers, and bell peppers are a huge part of my diet this time of year. Wonder if that means the soil's depleted around here more, or if I just don't absorb molybdenum well. Guess I'll find out soon enough!

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Curious.

For anyone worried about their intake, WHFoods.org lists a number of sources including summer squash (18% dv), eggs (11%), carrots (8%), romaine lettuce (7.5%), cucumbers (7%), bell peppers (6%), and a bunch more. The peas and beans have more like 200% of dv, as Shauna said.

I figured there must be more ways to get it or lots of us would be deficient. We didn't eat beans growing up because my mom didn't like them. I eat them now but not everyday.

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From what I understand, part of the issue can be that, because Molybdenum is a mineral, it has to be absorbed from the soil. So if the soil is in an area that has had a lot of farming and this particular mineral has been depleted, or if the soil is naturally low in this mineral, the veggies may not have lower amounts of it.

This sounds pretty sensible. I think over-farming and inorganic fertilization has screwed up a lot of our veggies

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Of course, when I asked my science-geek chemist hub about this, he pronounced "molybdenum" with no trouble :lol: and told me quite a bit. Smart dude. ;)

Apparently, there is quite a bit written about the soil deficiency. There is even an International Molybdenum Association.

who knew?

http://www.imoa.info/HSE/environmental_data/biology/plants_soils.php

Most of the articles I found are from the 50's through the 90's.

but this is interesting--

American Cancer Society:

"Humans require very small amounts of molybdenum, and deficiency appears to happen only under the rarest of circumstances. For example, molybdenum deficiency may appear in a person fed entirely through the veins for a very long time, or in a person with a genetic problem in which the body cannot use the molybdenum that is eaten in foods."

TH, that seems to be repeated in all the info. Did you doctor check if this is a genetic disorder?

Just wondering.

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TH, that seems to be repeated in all the info. Did you doctor check if this is a genetic disorder?

Thankfully, I don't have to worry about the genetic disorder. That disorder (It's called molybdenum cofactor deficiency) actually results in a pretty awful death a few months after birth. The sulfite levels build up and literally dissolve the brain. It's simply awful and so, so sad.

In 2009, though, an Autralian and a set of parents pushed to use an experimental drug for the first time, without even human trials, to try and save a little baby's life who had this and it actually worked! One of those really awesome stories with a really dedicated and awesome doctor:

http://www.news.com.au/national/doctor-cures-baby-z-of-molybdenum-cofactor-deficiency-in-medical-world-first/story-e6frfkvr-1225794526262

So it's not the genetic issue, and like you said, according to the literature, I shouldn't be having this issue. But my molybdenum levels were so low they registered as '0,' or 'below the detection level of the test.'

In forums for people with sulfite sensitivity, fibro, chemical sensitivities and a few other issues, I am finding the odd person here and there who tested low for Mo, so it looks like at least I'm not the only one bucking the odds, as it were. There's also a few in the same groups who have taken molybdenum supplements and had noticeable improvement in their symptoms (especially for sulfite sensitivity), but these were never tested.

I'd be interested to know if that latter group might have tested positive for deficiencies, too, or if they simply do better with higher levels of molybdenum than average, you know?

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This sounds pretty sensible. I think over-farming and inorganic fertilization has screwed up a lot of our veggies

Molybdenum is inorganic. Metals are inorganic. I think you mean something like not organic. The inorganic/organometallic chemist in me is coming out again.

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In forums for people with sulfite sensitivity, fibro, chemical sensitivities and a few other issues, I am finding the odd person here and there who tested low for Mo, so it looks like at least I'm not the only one bucking the odds, as it were. There's also a few in the same groups who have taken molybdenum supplements and had noticeable improvement in their symptoms (especially for sulfite sensitivity), but these were never tested.

I'd be interested to know if that latter group might have tested positive for deficiencies, too, or if they simply do better with higher levels of molybdenum than average, you know?

oookay...well, when I read about the genetic link, the material did not say the patient died shortly after birth. Well, that WOULD preclude you then. Since you are clearly, quite alive. :)

hmm...well, it might be that the "leaky gut" is perhaps an issue? I mention this as I have had multiple chemical sensitivities and some weird histamine/preservatives reactions going on myself and my GI doctor is stumped. (no allergies or intolerances show up on testing either!) :unsure: Doing an elimination diet has helped enormously, so I may be on the right track.

So, it would make sense that any deficiency might contribute to ill health--- as absorption would be compromised, yes?

Again, kuddos to you and your doc for figuring it out and I hope you feel better soon! We have to be our own best advocates.

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Molybdenum is inorganic. Metals are inorganic. I think you mean something like not organic. The inorganic/organometallic chemist in me is coming out again.

Should have said 'petroleum based', since that's what I meant anyway.

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Should have said 'petroleum based', since that's what I meant anyway.

Sorry for putting the wrong words in your mouth. I didn't even know that there was petroleum based fertilizer.

I went into another window and searched that and it looks I've come across another controversy. I don't think I want to get into that.

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I checked a NatureMade multivitamin for men bottle and it has 100% RDA of molebdenynum in it. I imagine it is in other multivitamins also?

It is certainly one I never thought about though. Thanks for posting about it Shauna! :)

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:lol:

I only heard of it when reading about amino acids months ago and how we celiacs are deficient in them and some trace elements and checked my vits, too! there it is.

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I checked a NatureMade multivitamin for men bottle and it has 100% RDA of molebdenynum in it. I imagine it is in other multivitamins also?

It often is, that I've seen. Unfortunately, for vitamins that are free of a lot of allergens (especially corn), many seem to leave out certain nutrients. I'm not sure why. Wonder if perhaps the usual carriers or sources for these are typically from the allergens trying to be avoided, so it's easier/cheaper to just leave them out. Sometimes a company will have a secondary 'trace minerals' supplement that can be purchased in that case, but not always.

I have a lot of problems with supplements since I went gluten-free - they've all made me really ill. The molybdenum supplements have turned out to be even more frustrating than usual, sigh. With low molybdenum, one cannot properly process sulfites. Guess what's usually in molybdenum supplements? Sulfited ingredients. Argh.

Hopefully the one I ordered will work for me! :-)

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