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Endomysial Test (ema)


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#16 floridanative

 
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Posted 08 November 2005 - 02:31 PM

I supposedly had a Celiac panel blood test done today and they only took one vial of blood. Anyone know if that's all it takes? I was so taken off guard when the hemotologist told me that based on my symptoms he really doesn't think I had celiac disease and by the way, my pcp promised all the paperwork was sent over and (oops!) they didn't send over many many things. Even the anti-body test info wasn't there!!! I was hoping today to find out what the heck test that was!!!! Now I have to call my pcp tomorrow and see if they can tell me.

Anyway, the new doc sheduled my biopsy (with GI he's affiliated with) and I'm cancelling the one with the other GI doc who said he'd biopsy me IF he saw something with the scope. At least the blood doc said you have to take many biopsies because only part of the lining could be damaged. And he said that you can't for sure see the damage. So I know he knows more than the only GI I've seen.

BUT - when I said 'I don't have cancer according to the GI so if I don't have celiac disease what else could be causing the anemia', guess what he said? 'Well you've been menstrating for many years (he knows I have very light cycles since he asked) and all that blood loss does cause some women to become anemic later in life. When you go through menopause, it will go away'. My last question is - has anyone else been told this to later find out that indeed your anemia was caused by celiac disease?
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Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

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#17 Rachel--24

 
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Posted 08 November 2005 - 02:46 PM

Rachel, yeah, I hate that they charge so much. Ask them to fax the records to you locally though or to a doctor that you know will not charge and you may be able to get around it.

<{POST_SNAPBACK}>



I think if I understood correctly if I'm requesting the records for *myself* then I have to pay but if I want them sent to a new doctor I don't. I *think* thats what I was told. I'm going to switch plans this month and finally get out of my HMO...I'll wait till I switch and then try to get the records.
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#18 Claire

 
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Posted 08 November 2005 - 03:49 PM

I supposedly had a Celiac panel blood test done today and they only took one vial of blood. Anyone know if that's all it takes? I was so taken off guard when the hemotologist told me that based on my symptoms he really doesn't think I had celiac disease and by the way, my pcp promised all the paperwork was sent over and (oops!) they didn't send over many many things. Even the anti-body test info wasn't there!!! I was hoping today to find out what the heck test that was!!!! Now I have to call my pcp tomorrow and see if they can tell me.

Anyway, the new doc sheduled my biopsy (with GI he's affiliated with) and I'm cancelling the one with the other GI doc who said he'd biopsy me IF he saw something with the scope. At least the blood doc said you have to take many biopsies because only part of the lining could be damaged. And he said that you can't for sure see the damage. So I know he knows more than the only GI I've seen.

BUT - when I said 'I don't have cancer according to the GI so if I don't have celiac disease what else could be causing the anemia', guess what he said? 'Well you've been menstrating for many years (he knows I have very light cycles since he asked) and all that blood loss does cause some women to become anemic later in life. When you go through menopause, it will go away'. My last question is - has anyone else been told this to later find out that indeed your anemia was caused by celiac disease?

<{POST_SNAPBACK}>


Hopefully you are waiting for the celiac test results before you have the biopsy.

Yes there is an age related anemia - usually affects fairly old people.

If not celiac what could cause it? - any number of things. Some of the causes of anemia are external or internal bleeding, iron deficiency, anemia of chronic disease, kidney disease, pregnancy, poor nutrition, and alcoholism. Under poor nutrition you can think malabsorption - this can be caused by LGS - Leaky Gut Syndrome - which follows food sensitivies (not just gluten). Claire
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#19 floridanative

 
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Posted 08 November 2005 - 05:29 PM

[[QUOTE]quote=Claire,Nov 8 2005, 07:49 PM]
Hopefully you are waiting for the celiac test results before you have the biopsy.

Yes there is an age related anemia - usually affects fairly old people.

If not celiac what could cause it? - any number of things. Some of the causes of anemia are external or internal bleeding, iron deficiency, anemia of chronic disease, kidney disease, pregnancy, poor nutrition, and alcoholism. Under poor nutrition you can think malabsorption - this can be caused by LGS - Leaky Gut Syndrome - which follows food sensitivies (not just gluten). Claire

<{POST_SNAPBACK}>

[/quote][/QUOTE]

Yes I'm waiting for the blood tests to come back before having the biopsy. My colon test came up clean and my anemia is from iron deficiency but no one has figured out why this all of a sudden cropped up last year (anemia diagnose in spring 05 but I knew I was sick last fall, just took a while for three docs to find the problem). Okay so - I never ate red meat before (for about 18 years) and now I eat it occasionally and when I was already eating more of it , the anemia showed up.

Oh and I forgot to mention what else the hemo doc said today. Dr. - have you heard of the gluten free diet? Me - yes I know a lot about it. Dr. - then you know it's like everything you love to eat, well you can't ever have it again. I would never tell anyone to go on it until we do several concurring biopsies so we can see if there is damage and if it's getting worse. Me - (thinking, not saying) -I don't think that sounds too smart!

Maybe the biopsy would show if I have LGS and not celiac disease? I eat very healthy and my family thinks I'm a health nut even though I eat meat. I eat lots of fresh veggies and fruit and all dairy and gluten of course. So I'm not malnourished from a poor diet. I never had kids so I wonder if women who don't give birth have higher incidents of iron def. anemia. Also, I drink alcohol but one drink is my limit. If I really want to party I have two martinis. I'm more confused now than ever which was not my goal when I insisted on seeing a hemotologist.
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#20 Claire

 
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Posted 08 November 2005 - 08:53 PM

[quote name='floridanative' date='Nov 8 2005, 08:29 PM']
[[/QUOTE]


Oh and I forgot to mention what else the hemo doc said today. Dr. - have you heard of the gluten free diet? Me - yes I know a lot about it. Dr. - then you know it's like everything you love to eat, well you can't ever have it again. I would never tell anyone to go on it until we do several concurring biopsies so we can see if there is damage and if it's getting worse. Me - (thinking, not saying) -I don't think that sounds too smart!

Maybe the biopsy would show if I have LGS and not celiac disease? I eat very healthy and my family thinks I'm a health nut even though I eat meat. I eat lots of fresh veggies and fruit and all dairy and gluten of course. So I'm not malnourished from a poor diet. I never had kids so I wonder if women who don't give birth have higher incidents of iron def. anemia. Also, I drink alcohol but one drink is my limit. If I really want to party I have two martinis. I'm more confused now than ever which was not my goal when I insisted on seeing a hemotologist.

<{POST_SNAPBACK}>

[/quote]

You were very right - NOT SO SMART. Dumb, in fact. Even if the doctors are aware of celiac and gluten free diets they only know a smidgen - just enough to make bad decisions and give misleading advice.

The biopsy is not used for detecting LGS. There are other much less invasive tests for doing that. If you have Celiac or any other autoimmune disease LGS is very likely. It has been written that you can't have celiac without it. I think that is true of all the autoimmune diseases. Particles have to get into the blood stream in order for the immune system to mount a response.

I don't know about a relationship between anemia and having children. I would think it would be less likely rather than more likely.

Have the doctors looked for any source of internal bleeding? That is always a route to follow when all other searches come up blank.

I am convinced that the more doctors we see the more confused we become. I have seen four neurologists in the past six months and was interviewed by a panel of 10 at NIH. Confusing. Claire
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#21 floridanative

 
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Posted 09 November 2005 - 10:14 AM

[[QUOTE]quote=Claire,Nov 9 2005, 12:53 AM]
Have the doctors looked for any source of internal bleeding? That is always a route to follow when all other searches come up blank.

I am convinced that the more doctors we see the more confused we become. I have seen four neurologists in the past six months and was interviewed by a panel of 10 at NIH. Confusing. Claire

<{POST_SNAPBACK}>

[/quote][/QUOTE]

I don't know if they looked for internal bleeding....who would do that? I had a colonscopy which showed only slight diverticulosis. Nothing to even remove and send off for testing.

I know what you mean about the more doctors you see and getting more confused. My GI at least thought my antibody level was abnormal and so this started my search for answers about celiac disease. But the blood doc said in no way would you tell someone they could have celiac disease based on that alone. Well that sort of got me excited thinking the GI is mistaken but until the Celiac panel blood tests come back I won't know what's what!
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#22 kelliac

 
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Posted 09 November 2005 - 11:59 AM

BUT - when I said 'I don't have cancer according to the GI so if I don't have celiac disease what else could be causing the anemia', guess what he said? 'Well you've been menstrating for many years (he knows I have very light cycles since he asked) and all that blood loss does cause some women to become anemic later in life. When you go through menopause, it will go away'. My last question is - has anyone else been told this to later find out that indeed your anemia was caused by celiac disease?

<{POST_SNAPBACK}>


When I was a teenager, I was diagnosed with severe anemia. After four kids, I was still anemic and told that they were the cause. Years ago, had some nail changes (clubbing, curving, color changes). The dermatologist ran a ferritin level and it came back 4 (I think she said normal is 20-100). She put me on feosol 2 x a day and rechecked. It came up to 7 and she increased it to 3 x a day. It came up to about 11 and dropped back to 4. At that point she recommended a hematologist.

The hematologist ran a lot of blood work and it came up microcytic anemia, macrocytic anemia, non-specific cold auto antibodies. She did xrays, physicals and increased the iron. At a follow up with a different hematologist, he looked me right in the eye and said "you're fat, female and over 40, get over it". Nice guy. By the way, I am 125 lbs, female and over 40 so he was close. He then said "you will continue to be anemic until menopause, just wait it out".

He wrote a letter to my PCP and said "she needs a hysterectomy as much as I do". He further wrote that I just needed to be patient for 10-15 more years until menopause and nature will take its course. A month later, I started bleeding profusely and it did not stop for six months. I was put on hormones and various other drugs to slow the bleeding but nothing worked. Eventually, had the hysterectomy and the levels got a little better. When the anemia returned, it was discovered that I had celiac which in turn was causing vitamin and mineral deficiencies (specifically Vit. K, Iron, Vit. D). So YES, you can have anemia directly related to celiac/gluten sensitivity/malabsorption problems. What do they tell men who don't have periods?
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gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03
DQB1,1 (subtype 6,6).
Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.
casein free/dairy free 11/05, since positive enterolab casein test

#23 floridanative

 
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Posted 09 November 2005 - 12:27 PM

What do they tell men who don't have periods?

<{POST_SNAPBACK}>


Oh my gosh kelliac! That is horrible - what a jack $%&!!! And your question is perfect. What do they tell anemic men??? I guess I was just so shocked that I felt like I shouldn't question this guy because he seemed like he know a lot more than my GI for which I was grateful. But he pushed and pushed asking all the details of my monthly cycle and I told him in no uncertain thems. I was on bc pills (for 19 years) until two months ago (after my anemia popped up) and I had only one heavy period in all that time. My cycles were on schedule and 3 days long - not painful or heavy. So I was just so floored when he said he was pretty sure I don't have celiac disease and that my anemia would go away after the change. What a jerk!

Thanks for sharing!
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#24 Nevadan

 
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Posted 09 November 2005 - 01:58 PM

Oh my gosh kelliac! That is horrible - what a jack $%&!!! And your question is perfect. What do they tell anemic men???

<{POST_SNAPBACK}>



Speaking of anemic men :) My red blood count has ranged 4.25-4.43 (Normal: 4.5-6.0) for many years. My doctors (several over the years) look at my results and almost unanimously say "Uhmm, that's a little low, but it's been that way a long time and it's not getting any worse; we better keep an eye on that." End of discussion.

My mother and older brother also had slight anemia for years but as they got older it got much worse. I know my Mother had at least one DQ1 gluten sensitivity gene type (since I have a pair of DQ1's) and it's possible my brother also has at least one; both continued to eat gluten, quite a bit in fact.

The doctors may be right, but I'm very interesting in seeing what my results are after 6 months gluten-free which will occur in Jan.

George
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#25 floridanative

 
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Posted 09 November 2005 - 02:08 PM

Thanks for offering a male point of view George. Guess it doesn't matter what sex you are. If doctors can't explain something, they just act like everything is fine.
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Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#26 Claire

 
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Posted 09 November 2005 - 04:33 PM

[quote name='floridanative' date='Nov 9 2005, 01:14 PM']
[[/QUOTE]

I don't know if they looked for internal bleeding....who would do that? I had a colonscopy which showed only slight diverticulosis. Nothing to even remove and send off for testing.

I know what you mean about the more doctors you see and getting more confused. My GI at least thought my antibody level was abnormal and so this started my search for answers about celiac disease. But the blood doc said in no way would you tell someone they could have celiac disease based on that alone. Well that sort of got me excited thinking the GI is mistaken but until the Celiac panel blood tests come back I won't know what's what!

<{POST_SNAPBACK}>

[/quote]

I would pose the question to your primary physician - whoever you consider that to be. May be your GP or other. Don't let them brush you off. Unexplained anemia can be a sign of either significant or slow, less significant internal bleeding. It should be investigated if all other possibilities have been exhausted. Claire
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#27 floridanative

 
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Posted 09 November 2005 - 04:48 PM

[/quote]

I would pose the question to your primary physician - whoever you consider that to be. May be your GP or other. Don't let them brush you off. Unexplained anemia can be a sign of either significant or slow, less significant internal bleeding. It should be investigated if all other possibilities have been exhausted. Claire

<{POST_SNAPBACK}>

[/quote]

Thanks Claire. I'll ask my pcp next week when I have my cholesterol checked.
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#28 Claire

 
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Posted 09 November 2005 - 07:03 PM

[quote name='floridanative' date='Nov 9 2005, 07:48 PM']
[/quote]

I would pose the question to your primary physician - whoever you consider that to be. May be your GP or other. Don't let them brush you off. Unexplained anemia can be a sign of either significant or slow, less significant internal bleeding. It should be investigated if all other possibilities have been exhausted. Claire

<{POST_SNAPBACK}>

[/quote]

Thanks Claire. I'll ask my pcp next week when I have my cholesterol checked.

<{POST_SNAPBACK}>

[/quote]

After I answered this I thought that - if you have celiac disease and have GI symptoms an ulcer would be easy to miss. Not wanting to give you something else you don't need - just a thought. Claire
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#29 e&j0304

 
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Posted 09 November 2005 - 07:19 PM

My dd was also always anemic and I believe that it was directly related to her gluten sensitivity. Nothing was ever done about it and I was told her give her a vitamin and be sure she ate enough iron. This was a child who ate us out of house and home and then some because she was so starving and yet was vitamin deficient and malnourished to the point that her hair was/is falling out.

Drs. are on my hit list right now!!! We didn't get the menstrating line, obviously, but we just got some other BS because they obviously knew she was eating better than most children on this planet, yet was not absorbing the nutrients properly. They chose not to figure out why...
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#30 floridanative

 
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Posted 10 November 2005 - 07:16 AM

Claire - well I don't know that I have celiac disease yet. I don't really have the gastro symptoms. But I'm going to ask my doctor to check for ulcers just in case. She's an internist but she's young and she doesn't seem to worry too much about what's causing my anemia. I want to change to another pcp but I can't do that in the middle of all these tests. One thing my doc will do is refer me to whoever I tell her to. Have to credit her for that.

e&j0304 - I'm right there with you on the doctors being on my hit list too. When the hemo doc stopped listening to me after he'd asked if I had 'D' or 'C' and I said no, I knew he wasn't going to be of help to me. At least he ordered the Celiac panel so I'm anxious to find out those results.
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06




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