B12 And D Deficiency - Celiac Panel Negative - Addison's Disease

[russtay1]

Hi All -

Here is my story. Over the years I have had extreme exhaustion, brain fog and frequent B12 deficiency. I have been hypothyroid for years.

Since doctors could never help me, I tried giving up wheat several times over the years... each time with some good results. I would doubt that I ever had an allergy in the first place and start eating wheat again. And then start feeling bad again and then...give up what again. So it was a cycle.

Turns out I have Addison's Disease (Primary adrenal insufficiency). I was diagnosed in April after an adrenal crisis put me in the hospital for a week.

Now that I take adrenal hormones so that I can live a "normal" life, I thought... let me start eating wheat again. So I did.

I've been eating wheat for four months. About 2 months ago, I started having a lot of flatulence and burping. I was also diagnosed with a B12 and D deficiency. I am also tired again and my brain isn't working as well.

Of course, I ran to my endocrinologist and he tested my adrenal hormones.... all are OK. So I should feel like a normal person and I don't.

Last week, my primary care doc ordered the celiac panel and it came back negative. I was almost hoping it would be positive.

So now here I am, feeling bad again, with doctors that are not helping me figure things out.

My questions:

Why am I so tired? They tell me I should feel "normal" with my Adrenal medication a the right levels. And I don't.

Why the vitamin deficiencies? I eat such good food! I mean... dark leafy greens kind of good food. I am in the sun quite a bit this summer.

Why all the gas?

Can I be allergic to wheat and still have a negative celiac panel?

You all are the experts. Maybe you can help.

Thanks!

A

[ShayFL]

Here! Negative tests.....but positive response to the diet.

Without a gold standard dx, but with a positive response to the diet (coupled with your auto-immune diseases and vitamin deficiencies) you have to ask yourself it your health is worth it to keep eating gluten? Or to stop and start?

I think you are here because you know the answer but want some reassurance.

So here it is.

If I were you, I would take it a step further and stop ALL gluten. Who knows how healthy you can be? Maybe heal your adrenals. You wont know unless you try. Eliminate all Wheat, Rye, Barley and Oats that arent certified gluten-free. And see what happens to your gas......

You have all of the typical symptoms, diseases and deficiencies of a Celiac.

You have nothing to lose.

Also, make sure your Thyroid hormones are good as well. The Adrenals and Thyroid work in tandem.

[russtay1]

It is maddening to think that I don't have a gluten allergy but need to give up gluten anyway. I already know how difficult the diet is and don't want to do it again. But then, I hear ya! If it worked before...why am I hesitant to just do it again?

I guess I am trying to find OTHER reasons for these deficiencies and symptoms.

I have an appt with my doc on Monday to talk about this. I want to figure out why I do not absorb B12. I think both deficiencies are related to my Adrenal Insufficiency. A lot of Addison's patients have Vit D and B12 deficiencies. But why? Based on my research, it looks like a gluten allergy is one of the most common reason for malabsorption. And gluten allergy has been closely tied to Addison's. So I was hopeful the tests would show gluten allergy.

Before the blood draw, I had been eating wheat for months and made sure I had a ton of it within the days before the test.

I asked my doctor to send me the lab results. I will post them here and see if anyone can see a mistake. And if any tests are missing.

She recently tested my thyroid levels and all was OK. I take 137 mcg per day levothyroxine. But I will ask her to test again on Monday.

I am also going to ask her to test my folic acid level. Can anyone think of other tests that might help figure this out?

I am scheduled for a B12 and D test in September, as that will be the end of 3 months of D (big pills weekly) and B12 (injections) treatment. Maybe she can test those levels now just to see.

I've decided to add depression to my list of symptoms. It is probably a side effect of all the other problems but hey..it's on the list. Last night I had quite the pity party.

Symptoms:

- Exhaustion and brain fogginess, lack of concentration, I sleep like a dead person... thru thunderstorms.

- Frequent gas (every day, most of the day..so embarrassing) This is a brand new symptom..never had it before when eating wheat.

- Deficiencies - B12 and D

- Depression

In pursuit of "normal",

Anne

[russtay1]

Here are my test results:

tTG, IgA 1

Deamidated Gliad IgA 4.5

Deamidated Gliad IgG 1.7

Reticulin Ab IgA Negative

Reticulin Ab IgG Negative

IgA 234 mg/dL

Everything seems to fall in the normal or negative range.

[susanm]

Hi, I'm in the same situation as you, although I'm still waiting for my anti-gliadin test results to come back. I also have Addison's, and I'm 100% sure I have gluten intolerance, whether the test comes back positive or negative. I also have Vitamin B12 and D deficiencies, and I have osteopenia bordering on osteoporosis, and I'm only 53. Also, I was diagnosed with celiac as a young child, but they continued to feed me wheat anyway

I have already start a gluten-free diet. Yes, it's hard, but I have finally resolved myself to not eating my absolute favorite foods - pasta. It has to be done, that's all.

I do believe I developed Addison's because my adrenals just gave up after eating wheat so much and then developing Lyme disease on top of it. That's my own opinion, not the doctor's. I think a lot of people with Addison's also have hidden celiac, but again, that's my guess.

I know living without wheat is hard, but it just has to be done, whether the tests are negative or positive. You know your body best.

[georgie]

A lot of Addison's patients have Vit D and B12 deficiencies. But why?

Primary Addisons is an autoimmune disease. If you have one autoimmune disease you are more likely to have several. If you have Celiac you tend to have malabsorption and vitamin deficiencies. You may even have Pernicious Anaemia - another autoimmune disease. Have you been tested for that ? Check out Polyglandular Autoimmune Syndrome. Open Original Shared Link

Open Original Shared Link

My blood tests for Celiac were negative too. They are meaningless. The gold standard test is a positive biopsy but even that can have false negatives. Your response to the diet is the main dx.

[mommida]

Just like the last poster said, the positive response to the diet is scientific enough for diganoses. The test results for the Celiac panel could have easily been skewed by the on again-off again gluten free diet. One micron of gluten can cause a reaction but no one knows how much gluten it takes to cause enough damage for a positive test result.

Get checked for the pernicious anemia.

Good Luck.