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Am In The Wrong Place? Probably


alibooboo

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alibooboo Newbie

I may be making all of this up, except the early menopause, loss of hair, thyroid roller-coaster, diarrhea for years and muscle cramps in my feet that never quit.....but what the heck! Main issue: extreme and constant exhaustion. All auto-immune tests recently came back negative, thyroid treatment under review, female hormones non-existent (but I don't really miss them too much).

I currently live in Italy - not easy if you might have gluten issues, but many here manage it.

I had some celiac tests done recently and cannot interpret the results well. Can someone give me a hand?

Antibodies anti Endomisium IgA Negative (neg for values below 1:10)

Antibodies anti Gliadin IgA 33* U/ml (adults <25)

Antibodies anti Gliadin IgG 3,12 U/ml (adults <25)

Antibodies anti Transglutaminase IgA 8,21 U/ml (0-20)

The guy at the lab told me I was not allergic but that I did have some sensitivity to gluten.

So, does this all mean that I can go my merry way eating gluten or that I should remove it entirely, or neither?

Looking forward to your opinions and counsel!


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ravenwoodglass Mentor

Antibodies anti Gliadin IgA 33* U/ml (adults <25)

That was a positive test. If your not going to have a biopsy then start the diet. I hope your feeling better soon and feel free to ask any questions you need to.

mommida Enthusiast

If you get any one test out of the Celiac panel as a positive, you should have the endoscopy with biopsy for the "gold standard" of diagnoses.

I would take the positive on the bloodwork as enough proof for me and start the diet. What did your doctor say?

alibooboo Newbie

If you get any one test out of the Celiac panel as a positive, you should have the endoscopy with biopsy for the "gold standard" of diagnoses.

I would take the positive on the bloodwork as enough proof for me and start the diet. What did your doctor say?

Doc said it was definitely NOT celiac disease, but possibly some mild gluten sensitivity. The endocrinologist just ignored it entirely. I'm so relieved I want to cry. I know it's not an easy diet, and I will really really miss bread etc, but if it'll help, I'll do it. All I wanted was someone to tell me I wasn't dreaming it or exaggerating symptoms. All this time I've been thinking it was my thyroid, or something even nastier that would explain it all, especially the early menopause (at 29). Maybe this is that cause.

My thanks to all of you!

cassP Contributor

Doc said it was definitely NOT celiac disease, but possibly some mild gluten sensitivity. The endocrinologist just ignored it entirely. I'm so relieved I want to cry. I know it's not an easy diet, and I will really really miss bread etc, but if it'll help, I'll do it. All I wanted was someone to tell me I wasn't dreaming it or exaggerating symptoms. All this time I've been thinking it was my thyroid, or something even nastier that would explain it all, especially the early menopause (at 29). Maybe this is that cause.

My thanks to all of you!

dont just dismiss your thyroid either (which is also aggravated by gluten)... thyroid can cause all kinds of intestinal issues- constipation with HYPO.. and "D" with HYPER.. and it is quite possible to have both..

have u thought about a genetic test? it doesnt diagnose- but it might be one more piece of the puzzle- it was for me.

also- i know it must be hard in Italy- since they have the best food- but i have read- that they are very knowledgeable about Celiac, and very accomadating at restaurants and shops

good luck!

ravenwoodglass Mentor

Doc said it was definitely NOT celiac disease, but possibly some mild gluten sensitivity. The endocrinologist just ignored it entirely. I'm so relieved I want to cry. I know it's not an easy diet, and I will really really miss bread etc, but if it'll help, I'll do it. All I wanted was someone to tell me I wasn't dreaming it or exaggerating symptoms. All this time I've been thinking it was my thyroid, or something even nastier that would explain it all, especially the early menopause (at 29). Maybe this is that cause.

My thanks to all of you!

It really doesn't matter whether it is celiac or 'gluten sensitivity' you need to be just a strict either way.

Do give the diet a good strict try when your done with testing.

I also had a very early menapause and when I finally got diagnosed my OB/GYN told me that it might reverse but it was too late for me. You are much younger than I was though so hopefully that won't be the case for you.

Let us know how the trial of the diet goes. If you go with whole unprocessed foods at first it is easier but you should be able to find some replacements that you like in time.

alibooboo Newbie

It really doesn't matter whether it is celiac or 'gluten sensitivity' you need to be just a strict either way.

Do give the diet a good strict try when your done with testing.

I also had a very early menopause and when I finally got diagnosed my OB/GYN told me that it might reverse but it was too late for me. You are much younger than I was though so hopefully that won't be the case for you.

Let us know how the trial of the diet goes. If you go with whole unprocessed foods at first it is easier but you should be able to find some replacements that you like in time.

Not younger - my menopause was right after the (lucky) birth of my son in 1987, last period in 1986, and I'm 52 now. I was menopausal for three years before I went to the endo to find out what was up. I always say that if I got pregnant the baby would have to be Jesus' little brother or sister....


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alibooboo Newbie

dont just dismiss your thyroid either (which is also aggravated by gluten)... thyroid can cause all kinds of intestinal issues- constipation with HYPO.. and "D" with HYPER.. and it is quite possible to have both..

have u thought about a genetic test? it doesnt diagnose- but it might be one more piece of the puzzle- it was for me.

also- i know it must be hard in Italy- since they have the best food- but i have read- that they are very knowledgeable about Celiac, and very accommodating at restaurants and shops

good luck!

I haven't dismissed thyroid at all, in fact I have been taking thyroid meds for the past ten years (under-active), but they have done nothing for the exhaustion or diarrhea. That did abate when I removed all carbs from my diet for a year or so. I did feel better then. Ten years ago, after naturopatic treatment, I already knew that I had "problems" with wheat (oats too), as well as soy, and a few other things. But since no one told me outright to eliminate it entirely, I failed to do that. I think I've been paying the price ever since. Not sure if I can get the Italian health care system to spring for DNA testing. I think I'll just self-treat for now with diet and keep an eye on my thyroid hormones too. All of those systems are inter-related, right?

AerinA Rookie

I haven't dismissed thyroid at all, in fact I have been taking thyroid meds for the past ten years (under-active), but they have done nothing for the exhaustion or diarrhea. That did abate when I removed all carbs from my diet for a year or so. I did feel better then. Ten years ago, after naturopatic treatment, I already knew that I had "problems" with wheat (oats too), as well as soy, and a few other things. But since no one told me outright to eliminate it entirely, I failed to do that. I think I've been paying the price ever since. Not sure if I can get the Italian health care system to spring for DNA testing. I think I'll just self-treat for now with diet and keep an eye on my thyroid hormones too. All of those systems are inter-related, right?

It seems like everything is inter-related, and it gets so frustrating when doctors focus on one specific thing and blame that... I had my migraines, semi-narcolepsy, brain fog/"ADHD," and thyroid issues (not absorbing my meds after having thyroid removed) being treated as totally separate problems, when in fact all my symptoms seem to have had one common cause: gluten. Trying the diet can't hurt as long as it won't cause any false negatives on tests.

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