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hi all,

ive been ill for what i thought was M.E FOR 18 YEARS,FAST FORWAD to 3 years ago having graves disease and a total thyroidectomy never right since.drs did celiacs blood test which was positive ,had endoscopy which was negative,what shall i do now?i

.im

i

n the uk and thinking of having the gene test done.is there other things that give a positive blood result?

Tanya.x

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Have you gotten off gluten yet? Within three days of getting off gluten, I was a NEW person. You may have to try things yourself. I had been to 10 different doctors before anyone ever mentioned celiac disease to me. I tried the diet, and that was it!

Sorry I cannot be more help...

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hi all,

ive been ill for what i thought was M.E FOR 18 YEARS,FAST FORWAD to 3 years ago having graves disease and a total thyroidectomy never right since.drs did celiacs blood test which was positive ,had endoscopy which was negative,what shall i do now?i

.im

i

n the uk and thinking of having the gene test done.is there other things that give a positive blood result?

Tanya.x

Positive blood work is a true diagnosis. Give the diet a true 100% for three months and see how you feel. My guess it Marvelous!

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Positive blood work is a true diagnosis. Give the diet a true 100% for three months and see how you feel. My guess it Marvelous!

should the bloods have been a full panel?

they only tested t.transglutaminase antibody..which was positive.

Tanya.x

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should the bloods have been a full panel?

they only tested t.transglutaminase antibody..which was positive.

Tanya.x

yes, probably. Are you still eating gluten? Can you get it redone?

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Have you gotten off gluten yet? Within three days of getting off gluten, I was a NEW person. You may have to try things yourself. I had been to 10 different doctors before anyone ever mentioned celiac disease to me. I tried the diet, and that was it!

Sorry I cannot be more help...

If you feel that wheat is a problem, yes, try to get away from it for a while and see what happens. But, it may take longer than a few days to feel a difference, especially if you have other more complex problems as a result of the wheat.

However, when changing your diet, always, always make sure that you know how to eat a balanced diet without the particular product, which you are removing. This is not as easy as you may think. When you have been eating a product as a regular part of your diet for so many years, your brain thinks about dietary needs with that particular product in mind. You must make a concerted effort to analyze what you eat, what you used to eat, and what you should eat.

One of the main reasons that wheat is such an integral part of the human diet, and has been for about 6000 years in one form or another, is that you can get carbs and protein from it with relatively ease, and for cheap. When civilization as we know it formed about 6000 years ago in the Middle East, the leaders of the time realized that growing wheat type products could feed the growing numbers of masses. These numbers of masses increased due to the new social structure and city environment. Growing sufficient amounts of other foods to feed them was simply impossible, and pretty much is still hard today. Consequently, wheat/bread became a staple of the human diet. With it came a trade-off of hardships. 1 in every 100 people are intolerant to wheat gluten...that's 10% of the population that should not, and cannot eat wheat products!! The decision was unwittingly made over 6000 years ago to not care about that 10%, but is propagated today, still by both industry and government. So many foods have wheat gluten added as a protein supplement, and other portions of the stalk as filler, that it is almost impossible to just remove it from the social structure of food manufacturing.

However, you have the power to remove it from your diet...in what ever proportions you need to, whether that be completely, or only partially, but you must be dedicated to doing so and giving up a lot of the "easy foods" that you used to fill your diet with.

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1 in every 100 people are intolerant to wheat gluten...that's 10% of the population that should not, and cannot eat wheat products!!

These two statements contradict each other. 1 in 100 is 1%, not 10%.

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These two statements contradict each other. 1 in 100 is 1%, not 10%.

SO WITH THAT ONLY 1 POSITIVE BLOOD RESULT,SHOULD I TAKE IT I AM CELIAC OR COULD SOMETHING ELSE CAUSE IT TO BE RAISED?

tANYA.X

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SO WITH THAT ONLY 1 POSITIVE BLOOD RESULT,SHOULD I TAKE IT I AM CELIAC OR COULD SOMETHING ELSE CAUSE IT TO BE RAISED?

tANYA.X

anyone?

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The tissue transglutaminase test is a pretty specific test, but it may be postive in a few other cases.

Celiac is often patchy, and if they missed the right spot, they missed it. Or, the biopsy specimen was not oriented right. Or, they did not count the intraepithelial lymphocytes. If they are a bit increased then this points to celiac. Or, the pathologist is not good.

Another thing is M.E.

You probably heard of professor Kenny De Meirleir from Belgium.

He says M.E is an immune illness of the gut, and lots of patients report getting better within a year. They often have enteroviruses and food intolerances and gluten intolerace, fructose or other sugar intolerances. And it takes about 8 months or more for the gut to replace immune cells, therefore it takes a while.

The antigliadin thing may come from gut immunity problems (and of course the diet prescribed to such patients is a gluten free diet)

I do not know if that improves after treatment, if those patients tolerate gluten after treatment, but some lyme patients have reported that they are now back on gluten. In their case it was pseudo-celiac. They got just as sick from gluten as celiacs do. LymeMd also mentions this phenomenon on his blog.

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These two statements contradict each other. 1 in 100 is 1%, not 10%.

Yep, Peter, that was a typo....should be 1%

But let's not take away the effect here...even 1% of the population is a large number of people!

And in other populations, for instance those of North Africa, the number is 1 in 5, or 20% !!

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SO WITH THAT ONLY 1 POSITIVE BLOOD RESULT,SHOULD I TAKE IT I AM CELIAC OR COULD SOMETHING ELSE CAUSE IT TO BE RAISED?

tANYA.X

Sorry, if I confused anyone with my statistic....

The proportion of people with Celiac Disease to those without it, has nothing to do with the accuracy of the blood test for antibodies.

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The tissue transglutaminase test is a pretty specific test, but it may be postive in a few other cases.

Celiac is often patchy, and if they missed the right spot, they missed it. Or, the biopsy specimen was not oriented right. Or, they did not count the intraepithelial lymphocytes. If they are a bit increased then this points to celiac. Or, the pathologist is not good.

Let's clarify this a little more so that we can describe this accurately:

In medical testing, and in statistics, there are two terms used to describe the accuracy of a test.

Sensitivity

Specificity

What does this mean?

Recall from your statistics classes the relationships between sensitivity and

specificity:

Sensitivity tells you the probability that a test will result in a true

positive outcome.

Specificity tells you the probability that a test will result in a true

negative outcome.

False negative rate = (1-sensitivity)

False positive rate = (1-specificity)

For the antibody tests typically in use, the results vary by lab, but the range is great in both sensitivity and specificity.

From a recent study on celiac disease and the descriptive statistics of the accuracy of the test results, (Please follow the link and read the study, you'll be surprised by what your doctor didn't know about these tests):

"The rational use of any test requires an understanding

of the sensitivity and specificity of the test. Most sensi-

tivity and specificity data for celiac disease serologic tests have

been generated from studies conducted in a research

setting and it is possible the tests may perform less well

in the clinical setting. Reasons for this possibility in-

clude the following: (1) there is a lack of test standard-

ization between commercial laboratories and variations

in cut-off levels can affect both the sensitivity and spec-

ificity1, (2) study populations in the research setting

usually have a much higher ratio of celiac to nonceliac

subjects that likely will render the test less accurate in

the clinical setting, (3) there still is no generally accepted

gold standard for the diagnosis of celiac disease. Biopsy specimen

confirmation is used most commonly to diagnose celiac disease but

variations in the severity of the histologic changes and in

the expertise of the pathologist can impact correct diag-

nosis in clinical practice adversely."

Link: http://www.sciencedirect.com/science/article/B6WFX-4FVC7DW-C/2/beffda22d7c33c90f556b4de3c3b6951

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csu, you are right.

About the positive ttg test and what it means, the thing is that it is quite specific.

And biopsies can miss celiac.

There was someone posting here I think who got a video capsule endoscopy and lo and behold the celiac was at the other end of the small intestine, thus missed by ordinary endoscopy.

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    Okay, thanks. Re: MTHFR - I don't really know yet... I only started reading about it yesterday and it is pretty overwhelming. But it does seem to be common advice that if you have a close relative with it you should be tested, and I guess having 2 copies of the "C" variant, as my sister has, is the "worst" variety of it.  It came to light for her when she was going through infertility and miscarriages.  They discovered that her homocysteine was high, which led to the MTHFR testing. So that is one thing I know I would then want to proceed to do, if I do have it - get my homocysteine tested. My dad died of early-onset Alzheimer's, and apparently there is a link between high homocysteine as well as the MTHFR mutation and Alzheimer's. It also seems like it would be worth knowing if I have it since it could be the cause of my lower levels of B12. And I guess maybe I would need to start taking methyl-folate? I mean, to answer your question, I am not entirely sure what I will do if I do have it.   Probably read a lot more about it... and take supplements like methyl-folate if I really think I need to.  Check my homocysteine & control that if I need to, hopefully to lower my risk of Alzeheimer's.  It seems like a frustrating area because there appear to be limited official medical websites that really even talk much about it (so far).  I have found one article on the NIH that focuses on the link with high homocysteine. I already eat a very healthy diet.  Whole grains, lots of fruit & veg, mostly organic.  I am a vegetarian except for very rare seafood. I avoid processed food and, above all, foods with added sugar...  To me, sugar is by far the worst culprit in the SAD.  I think RA has been ruled out by my 2 negative Rheumatoid Factor tests (one done several years ago, one just this year at my physical).  Also, the way this started in my elbows, and was really only there for years, is just... weird... and definitely doesn't really fit with arthritis.  And there is no swelling to speak of, just mild pain - sometimes aching, sometimes burning, sometimes sharp...  It may or may not fit with any systemic diagnosis versus a mechanical one, but nowadays I do also have pain in my hands, feet, and knees.  So then I think, well maybe it is/was something systemic, but it was worse in my elbows for some mechanical reason but now has progressed elsewhere.  I thought Crohn's was just digestive?  (Of course, many people think that of celiac.)  So I haven't really investigated that one much. My ANA was retested and is back down to "negative," so I think that pretty much rules out lupus.  I believe fibromyalgia is still on the table. Anyhow....  Your point is nonetheless taken.  I do want to rule out celiac and go from there.  At this point I'd sure love to find out it is something I could control through my diet!
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