6 Months After Gluten Free Diet - Misdiagnosis ?

[eazyeazy]

Hey,

I have been on gluten free diet for almost 6 months right (matter of fact I have even stopped eating gluten free bread and snacks - I have limited myself to "paleo diet"). But still I have this strange feeling that something is missing. First of all I still have this "heavy head" feeling, i'm tired, i have anxiety problems and skin problems. The only thing that changed was that I no longer have diarrhoea but this I think was the effect of paleo diet not the gluten free diet (although bloating still happens from time to time). Anyway any chances I have been misdiagnosed (I had 2 marsh degree villous atrophy, my antibiodies were normal)? What other tests can I do?

Thanks.

[AVR1962]

I would say that the diagnosis is probably good. It sounds to me like you could be dealing with a vit deficiency. Vits b and c contribute to our skin. Vits B12 & 6, magnesium, iron, and d can cause fatigue.

[eazyeazy]

Hey,

Unfortunately I have tested B12, iron, d levels and they are all normal

[ravenwoodglass]

Hey,

Unfortunately I have tested B12, iron, d levels and they are all normal

What were your levels for the B12? Some doctors consider anything above 250 normal while they are realizing now they need to be over 500. If you are below 500 then do try sublingual tablets for a bit.

If your skin issues are DH then you also need to limit iodine for a while. While you don't have to be injesting both iodine and gluten to have a DH ourbreak iodine will keep the antibodies active in the skin.

While you are eating a paleo diet are you baking gluten stuff for your family? Using flour for others can be a problem for us.

All that said it does sometimes take a very long time for us to heal fully and with a Marsh 2 result you do need the diet.

[eazyeazy]

I don't remember the actual levels after the b12 injections but they were something above 500. As for DH I don't have it - I have acne-like pustules on face. Besides my face everything is perfectly clear.

For the past few months we don't bake anything with gluten. Of course some members of the family eat normal bread (from shop) but I'm staying away from it and also I have my own place in the kitchen.

Yeah I know it may take a long time but I guess after 6 months I should see some progress like the other members do

[frieze]

I don't remember the actual levels after the b12 injections but they were something above 500. As for DH I don't have it - I have acne-like pustules on face. Besides my face everything is perfectly clear.

For the past few months we don't bake anything with gluten. Of course some members of the family eat normal bread (from shop) but I'm staying away from it and also I have my own place in the kitchen.

Yeah I know it may take a long time but I guess after 6 months I should see some progress like the other members do

Are you still getting B12 shots? how soon after a shot was the level drawn? Commonly B12 def is long term if not permanent. Getting the level done again, esp. if no longer getting shots would be good.

Get copies of ALL your lab work so that you can track trends. You may need a higher than "normal" level of D as well, especially if it is affecting your mood. good luck

[eazyeazy]

Nope I'm not getting B12 shots any more, plus B12 supplements make me breakout a lot (this is actually known side effect of b12 supplementation in medical journals). My D3 level is correct - I haven't noticed any effect after supplementing this vitamin.

[T.H.]

Food/substance allergies or intolerances might be a possibility. There are many that only affect the gut - no hives and such.

This happened to me, where I didn't have trouble with these before diagnosis, but I did afterward. They do affect my skin, some of them make me all spaced out, exhausted, insomnia - it depends on the food.

I pretty much am on a diet very similar to paleo, as well, just trying to avoid my allergens. We managed to track 'em down with both a food journal and blood allergy tests. I've tried to reintroduce all the foods I tested allergic to, after being off of them a while (as these tests aren't always accurate) and so far, I get sick from all of them, plus a few extra.

Might be worth doing a food journal, and trying to maybe eat certain foods/products only once a day or something, space out possible reactions. Even salt can be an issue - iodized salt has corn derivatives to stabilize the iodine, and most salt also has anti-caking agents added, too. So there may be foods that you would tolerate fine, but might be having an issue with a contaminant or addition of some kind, you know?

Oh, and if it helps? Most common foods I have heard of people around here having trouble with are dairy, soy, nightshades, and corn. Also finding a few here and there now who have trouble with all grains and grain derivatives, too.

good luck!

[RiceGuy]

It was six months before I saw any improvements at all, aside from the immediate thirst after gluten ingestion.

Do check all the ingredients of your vitamins. Not all B12 tablets are the same. You may not be reacting to the nutrient, but one of the other ingredients in the supplement you tried. In fact there's only one I can use, made by Source Naturals. I recommend the methylcobalamin type, in a sublingual tablet (NOT a liquid). I found that when I first began taking methyl B12, the tablet would dissolve very slowly over a period of around 25-30 minutes. Gradually it dissolved more readily, such that now it is completely gone in about 10 minutes. This I attribute to improved absorption.

And yes, all the B vitamins are incredibly important, and are often deficient in those with celiac disease, especially while still healing. In fact, a good multivitamin might be very helpful. I know it still is for me.

I also agree with the suggestion of magnesium, not only because it was the one thing I obviously needed quite desperately, but magnesium is one of the most significant minerals in the human body. It seems to be involved in practically everything the body does.

Both B vitamins (including B12) and magnesium are crucial for proper neurological function. Deficiency in these does often lead to anxiety, brain fog, fatigue, and many other symptoms. You may also benefit from a zinc supplement.

As for vitamin C, the typical vitamin C supplement contains a synthetic form. While most everyone who has anything to say on the matter will insist that there's no difference between the synthetic and the natural, I found quite a large difference. So I can only recommend the natural, whole food forms, such as camu camu or amla berry. Both are available in supplement form.

Keep in mind that tests for nutrient levels aren't always a good indicator of deficiency, and not all labs perform the most accurate tests for every nutrient they look for. If you search a symptom with the word "deficiency" or "nutrients" after it, you can locate a lot of helpful information which can help you narrow down which nutrients may be the most helpful.