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Twiggy

Endomyosil Autoantibodies

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Hi everyone,i'm so glad i found this place its fascinating reading your topics.I havent been diagnosed yet but my doctor is pertty sure i have coeliac because of my symptoms and my blistery rash i am also hyopthyroid too.I had a emdomyosil (sp?) blood test done last week and i am worried because ive read that this quite often comes bak as a negative when people are actually coeliac.I have had loads of blood work done and lots of things were low like b12 ferritin and folate.I am desperate for a diagnosis so that i can quickly get myself well again.My shin bones and joints are really painfull and i get terrible muscle fatigue in my legs and arms.

Did any of the people here get a negative result for endomyasil autoantibodies and turn out to be coeliac??

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Hi everyone,i'm so glad i found this place its fascinating reading your topics.

...

Did any of the people here get a negative result for endomyasil autoantibodies and turn out to be coeliac??

Hi Twiggy,

I'm glad you found us too. I had completely negative blood work results twice before going gluten-free. You'll find a lot of people here did. However I went gluten-free based off my Dr. recommendation because she was running out of other things to test me for, then three weeks later also went CF (Caesin Free/Cow's milk). I had sent in to Enterolab for the fecal anti-body testing and DNA just about a week after going gluten-free but I began having immediate (within days) improvement in my symptoms.

My Enterolab results came back positive for all but malabsorption, and including two genes for Celiac. My Dr. had already diagnosed me based of the dietary response even though the blood work was negative, but this confirmed it.

I'd strongly recommend if you can afford it to have at least the gene testing done, if for no other reason than to be able to know if you may have family members who are likely to be at risk also.

The best test though is to go gluten-free (and maybe CF) too and see if you begin improving. It may take several weeks to see significant change, or it may happen in days.

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[snip]

I'd strongly recommend if you can afford it to have at least the gene testing done, if for no other reason than to be able to know if you may have family members who are likely to be at risk also.

[snip]

at the risk of being labelled an old crank (which i will admit to being on a part-time basis); asking for gene testing (ie., HLA haplotypes) is not a helpful diagnostic.

you may as well ask how many celiacs have brown (or brunette) hair. i'd guess about 80% or higher are brunette.

does this mean that all brunettes have celiac? i also do not believe that carrying genes for brown hair is any way to evaluate risk factors.

silly example, i know, but its the identical comparison with the DQ haplotypes.

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Hi Guys,thanks for your input here.I'm just worried sick that its going to take months to get a diagnosis......patience isnt my strong point at the best of times :rolleyes:

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If you have the rash, you can be tested for DH. If that is positive, you are celiac. Make sure they biopsy it properly, beside the lesion not from the lesion itself. You can access and article from the home page that outlines the procedure.

I know that the genetic testing does not diagnose but when other testing fails but you have a strong dietary response, your dr can use genetic testing as another piece of the puzzle to your health.

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Hi Guys,thanks for your input here.I'm just worried sick that its going to take months to get a diagnosis......patience isnt my strong point at the best of times :rolleyes:

i understand completely... my motherinlaw used to say...

patience is a virtue,

possess it if you can.

seldom found in a woman,

and never in a man....

she was a hoot ... AND a celiac!

:)

anyway... the difficulty of diagnosis is compounded as the secondary symptoms (joint pain, fatigue, bloating, etc, etc) can be much worse to bear than the actual damage done to the intestinal tissue. in fact, they can actually occur BEFORE you test positive for intestinal damage (the antiendomysial antibodies).

its probably the single biggest reason that many folks on the list suggest going gluten-free and feeling better before a confirmed.gold.standard diagnosis.

i used to be in the 'wait for a confirmed diagnosis'-camp; but, have begun to come around to thinking that the duration and level of discomfort are just not worth it for some people. like all things, these are personal decisions where you can weigh your priorities and decide what's important. as long as everyone gets the facts (and not all the facts have been determined) and noone relies on the scam-peddlers and pseudoscience (and there are LOTS) there is no single correct answer for everyone.

here's to hoping you begin to heal and feel better..!

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at the risk of being labelled an old crank (which i will admit to being on a part-time basis); asking for gene testing (ie., HLA haplotypes) is not a helpful diagnostic.

you may as well ask how many celiacs have brown (or brunette) hair. i'd guess about 80% or higher are brunette.

does this mean that all brunettes have celiac? i also do not believe that carrying genes for brown hair is any way to evaluate risk factors.

silly example, i know, but its the identical comparison with the DQ haplotypes.

Umm....I never said it was a diagnostic test. I said it might help her at least be aware if she or some of her family members may have a higher risk factor. The fact that I was diagnosed and carried the genetic predisposition was the factor that caused one of my sibling's doctor to have her tested via biopsy and it came back positive. So there can be significant value for some people.

And yes, your example was a silly, pointless, and irrelevant example and no it isn't an identical example.

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Umm....I never said it was a diagnostic test. I said it might help her at least be aware if she or some of her family members may have a higher risk factor. The fact that I was diagnosed and carried the genetic predisposition was the factor that caused one of my sibling's doctor to have her tested via biopsy and it came back positive. So there can be significant value for some people.

And yes, your example was a silly, pointless, and irrelevant example and no it isn't an identical example.

oh dear.

i guess i am showing my age, i suppose i meant the 'archaic' definition of 'silly', i.e.,

5. rustic; plain; homely.

i am very glad that any information led to someone else being diagnosed and getting relief; even if they were for the incorrect reasons.

i used to tell my students to 'show their work', because you can often arrive at the correct answer by making enough mistakes!!

:)

just knowing that an individual in a family had celiac disease would lead any certified (or competent) genetic counselor to suspect that other members of the family are at risk for the disease. HOWEVER, the HLA haplotypes are no more helpful, indeed they are LESS helpful than a standard celiac diagnosis arrived at by traditional means.

the 'hair color' example is EXACTLY how risk factors were calculated using the HLA haplotypes. and im(not-so)ho, equally useful.

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Hi everyone just back from my GP appointment.Endomysial Antibody blood test was negative,doc is refering me to a gastroenteroligist,i have an appt for 2 weeks time.The doc hinks i have the desease as i present with all the classic symptoms but wants me to have a Gut Biopsy to confirm.He seems to think that whatever the result i should refrain from gluten and see if symptome persist.I am not willing to do this until i have spoken to the specialist and he tells me to do so.Doc said even if the results came back positive he would have still refered me to gastro clinic.....ahhhggghhh,the saga continues.....help! How many of you tested negative and were infact positive?Doc says a negative blood test could indicate advanced coeliac,i just want an answer either way <_<

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Hi everyone just back from my GP appointment.Endomysial Antibody blood test was negative,doc is refering me to a gastroenteroligist,i have an appt for 2 weeks time.The doc hinks i have the desease as i present with all the classic symptoms but wants me to have a Gut Biopsy to confirm.He seems to think that whatever the result i should refrain from gluten and see if symptome persist.I am not willing to do this until i have spoken to the specialist and he tells me to do so.Doc said even if the results came back positive he would have still refered me to gastro clinic.....ahhhggghhh,the saga continues.....help! How many of you tested negative and were infact positive?Doc says a negative blood test could indicate advanced coeliac,i just want an answer either way <_<

i understand your impatience. many folks here and elsewhere went years before finding an answer. and it stunk.

however,

1st. if you start eating a gluten free diet (or, were gluten free prior to your blood test) -- you will more than likely have negative results. you MUST continue to eat a diet including gluten if you want to have a chance of receiving positive test results.

most people who have celiac disease would never have become sick at all (and not know they had a 'disease') if they never ate gluten. gluten triggers the disease; AND all the secondary effects (e.g., low nutritional status, vitamin deficiencies, aches&pains, etc,etc,etc). without the trigger, you will not have positive test results.

as for how many people test negative and actually have the disease is a very difficult question to answer (from a scientific point of view). 1st you have to know the population rates of false positives and false negatives; then you'd have to know how the celiac diagnosis was deduced (if all the tests were negative).

certain folks here will tell you that the symptoms of celiac disease occur long before there is sufficient physiological damage to actually register positive on the blood tests.

herein lies the rub.

be miserable long enough and test positive OR stop eating gluten for a few months and see if your symptoms are relieved. its a tough decision and different people come to different decisions based on all sorts of rationales.

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Hi everyone just back from my GP appointment.Endomysial Antibody blood test was negative,doc is refering me to a gastroenteroligist,i have an appt for 2 weeks time.The doc hinks i have the desease as i present with all the classic symptoms but wants me to have a Gut Biopsy to confirm.He seems to think that whatever the result i should refrain from gluten and see if symptome persist.I am not willing to do this until i have spoken to the specialist and he tells me to do so.Doc said even if the results came back positive he would have still refered me to gastro clinic.....ahhhggghhh,the saga continues.....help! How many of you tested negative and were infact positive?Doc says a negative blood test could indicate advanced coeliac,i just want an answer either way <_<

Hi Twiggy,

Both of my blood workups were negative for IgA, as was my Dad's and my sister's. Both of them were diagnosed positive via dietary response for GI and my Dad was diagnosed based on dietary response. But my fecal IgA test was positive, even though the stool sample was taken on the day following one of the blood draws. Since going gluten-free my health has begun improving and I'm doing better than I have in several years. I'm now also dairy free and soy free which has begun clearing up additional issues.

And yes, if you are IgA deficient your blood work may never be positive. A significant percentage of people with Celiac are IgA deficient.

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And yes, if you are IgA deficient your blood work may never be positive. A significant percentage of people with Celiac are IgA deficient.

absolutely.

approx 1:700 caucasians in the US are IgA deficient, there is a family history/heritable component... but, its inheritance pattern is unclear.

among celiacs, the literature is highly variable depending on country of origin and sample size; but around 1:70 celiacs present as IgA deficient.

there is also a 3rd subcategory of marginally-deficient IgA patients (low... but, not deficient) for which there is little to no evidence that it is associated with celiac disease; and may have more to do with age-bias in those surveys.

btw -- there is a very nice diagnosis decision tree for serologic diagnosis located here:

http://cvi.asm.org/content/vol9/issue6/ima...0620098002.jpeg

a few years old.... but, probably explains a lot of the current blood testing protocols...

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Thanks folks!! I suppose i wil just have to 'wait it out' and hope the result will come in the end.i am a little ashamed to admit that at the tender age of 39 (tomorrow :rolleyes: )i have still not learned the art of patience.

Thanks for all your helpful input into this thread i really find it helpful to hear others opinions.x.x.x to you all

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Thanks folks!! I suppose i wil just have to 'wait it out' and hope the result will come in the end.i am a little ashamed to admit that at the tender age of 39 (tomorrow :rolleyes: )i have still not learned the art of patience.

Thanks for all your helpful input into this thread i really find it helpful to hear others opinions.x.x.x to you all

Hope things work out and you find the answers you need. I'm curious though why you seem so determined not to try going gluten-free until instructed to do by the specialist if you are suffering? There are many people on here who never got a 'positive' confirmed test, but were diagnosed through dietary response.

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I had a negative EMA test. It was the only test my doctor would agree to do <_< . I read a paper once that stated about 20% of celiacs can be negative for EMA, they are referred to as "sero negative" celiacs. It could also be that the intestinal damage just isn't incredibly severe yet.

All I know is i had a VERY positive response to a gluten free diet. My psoriasis has improved dramatically, my brain fog and mood swings are gone/greatly reduced, and I'm no longer wanting to sleep in until 10 am like i used to. My poor husband would have to shake me awake in the mornings so I could tend to the kids and he could go to work! Now I wake up at a decent hour every morning, with energy to start off with.

My digestive system is much better--as I said to my husband, i didn't know it wasn't normal to have pain while going to the bathroom! Or to swing from constipation to diarrhea in the course of one day, or two days.

For me, at least, the gold standard is dietary response. If you have DH, by the way, a dermatologist can biopsy the rash and test for that. If it's DH, then you are celiac.

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Thanks for your reply Sam :P the reason i dont want to stop eating gluten before ive seen the gastro guy's is because every article ive read tells you not to as its important in order to not to get a false negative.I just want to do everyting by the book so that i can get well quicker and not have the teests hampered in any way.I have suffered this long and i guess it wont hurt to put up with it for a little while longer......im gaining weight which is little odd,ive gained 14lbs in 12 months :( i hope this dosent continue

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Thanks for your reply Sam :P the reason i dont want to stop eating gluten before ive seen the gastro guy's is because every article ive read tells you not to as its important in order to not to get a false negative.I just want to do everyting by the book so that i can get well quicker and not have the teests hampered in any way.I have suffered this long and i guess it wont hurt to put up with it for a little while longer......im gaining weight which is little odd,ive gained 14lbs in 12 months :( i hope this dosent continue

Contrary to popular opinion, it is not uncommon for celiac patients or those with gluten intolerance to be gaining weight. If your intestines can't absorb nutrients (due to damage of the villi), then your body will react by holding onto calories, since it thinks it's starving. I never had the stereotypical thinness that is associated with celiac. But when I went gluten free, people started commenting that I had lost weight.

You're right, you need to stay on a gluten-filled diet in order to rule out false negatives.

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I am covered in blisters now,knees elbows, feet and hands.my wrists and elbows are especialy sore.I hope the Gstro doc sees them on thursday and links the two together? I'm gluten free today and tomorrow cause i'm going away at the weekend and dont want to be ill/itchy or bloated.My lovely man i making me my first gluten free pizza for tonight's dinner,he really is a peach.

As for the weight issue......gah,it will just have to,well,........ wait!! :P

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