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isiskingdom

By isiskingdom
in Coping with Celiac Disease

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isiskingdom Contributor
isiskingdom
Posted

I am going to get a second opinion about my celiac. For a few reasons 1. I never recieved a biopsy after my pos. blood test and they were spos to. 2.I ask for help and recive none. So my new Doctor appointment is on the 12th of this month. I need to eat gluten in order for the biopsy to show pos right? I should add it little by little? I don't know what else to do!

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wowzer Community Regular
wowzer
Posted

I'm not understanding why you need a biopsy when you've had a positive blood test.

Guest kivmom3
Guest kivmom3
Posted

I am going to get a second opinion about my celiac. For a few reasons 1. I never recieved a biopsy after my pos. blood test and they were spos to. 2.I ask for help and recive none. So my new Doctor appointment is on the 12th of this month. I need to eat gluten in order for the biopsy to show pos right? I should add it little by little? I don't know what else to do!

I am also wondering why you are getting a biopsy if your blood test was positive. How positive was your blood test? Do you know the numbers?

I too did not have a biopsy at diagnosis a bit over 2 months ago. I also went for a second opinion due to the fact the first doctor just gave me websites to look at for celiac and two, never answered any of my questions/concerns or calls for guidance. The second doctor specialized in celiac and wanted me to eat gluten for 3 weeks prior to the biopsy. I asked why if my levels were so high. He reviewed my levels and agreed that due to the fact the numbers were so high, I most likely have celiac and if my husband and I did not want me to eat gluten for the test he was okay with it. The doctor also stated the blood test is 95% accurate in diagnosing celiac. I am having a biopsy this coming Wednesday without glutening myself.

How long have you been on a gluten free diet? I would wait until you see the doctor before eating the gluten. He/She may do the biopsy without you eating it even. I have met a lot of people who have not had the biopsy at diagnosis and just had the positive blood work as the diagnosing factor. I think it's your right to decide.

Hope this helps

Gg

jerseyangel Proficient
jerseyangel
Posted

Bobbie,

If you have positive bloodwork, and feel better on the gluten-free diet, I would say you have Celiac.

To even have a chance of an accurate biopsy, you need to be eating a minium of 3-4 slices of bread a day for at least 3-4 months. Even then, the biopsy is hit or miss. A biopsy can rule Celiac in, but not out.

You have to do what you need to do--if it were me, I'd just stay gluten-free and not look back. Hopefully doctor #2 on the 12th will agree that you do indeed have Celiac and will be there to answer your questions and monitor your levels, etc.

And of course, we're always here to answer any questions that we can :)

Guest Happynwgal2
Guest Happynwgal2
Posted

I only had a blood test, and after finding out from my new doctor that the specific blood test I had is a very good one to diagnose Celiac, I do not feel bad about not having a biopsy.

Thus I, too, am not sure that I understand why you really need a biopsy, unless your blood test was a different one than the one I had done.

In regard to a biopsy, my old doctor told me that it would NOT be necessary to go back on a gluten diet to have one done. The villi are damaged enough as it is, and the antibodies that they will test the sample for, will be there whether you eat gluten or not.

But check with your doctor. Or, better still, get even one more opinion.

There are several reasons why you may want to know for sure if you are a Celiac, one of the most important one is for your family's sake. Celiac is inherited, and it is an auto immune disease, and as such can do a lot of damage to you - and your children if you have any, or are planning to have some.

I am now 100 % sure that I have Celiac, even without a biopsy. My oldest daughter and her daughter, my sweet little five year old granddaughter, both get sick when eating gluten, so they have it, too. They are both doing the blood test later this fall, but we are 95 % sure the tests will be positive.

My youngest daughter tested negative for gluten, but is now starting to get upset stomachs when she eats some wheat products.

So your reasons for wanting a biopsy are good and many, but with the proper blood test, you should not need a nasty biopsy done...

Good luck, anyway - please let us know how the biopsy works out for you. :)

isiskingdom Contributor
isiskingdom
Posted
  • Author

I will not eat the gluten before my second opinion . Right now I am down to 114 pounds and getting worse it seems on this gluten-free diet. They have me not eating so many different foods it pathitic. This weight lose Has to Stop

I only had a blood test, and after finding out from my new doctor that the specific blood test I had is a very good one to diagnose Celiac, I do not feel bad about not having a biopsy.

Thus I, too, am not sure that I understand why you really need a biopsy, unless your blood test was a different one than the one I had done.

In regard to a biopsy, my old doctor told me that it would NOT be necessary to go back on a gluten diet to have one done. The villi are damaged enough as it is, and the antibodies that they will test the sample for, will be there whether you eat gluten or not.

But check with your doctor. Or, better still, get even one more opinion.

There are several reasons why you may want to know for sure if you are a Celiac, one of the most important one is for your family's sake. Celiac is inherited, and it is an auto immune disease, and as such can do a lot of damage to you - and your children if you have any, or are planning to have some.

I am now 100 % sure that I have Celiac, even without a biopsy. My oldest daughter and her daughter, my sweet little five year old granddaughter, both get sick when eating gluten, so they have it, too. They are both doing the blood test later this fall, but we are 95 % sure the tests will be positive.

My youngest daughter tested negative for gluten, but is now starting to get upset stomachs when she eats some wheat products.

So your reasons for wanting a biopsy are good and many, but with the proper blood test, you should not need a nasty biopsy done...

Good luck, anyway - please let us know how the biopsy works out for you. :)

ravenwoodglass Mentor
ravenwoodglass
Posted
I will not eat the gluten before my second opinion . Right now I am down to 114 pounds and getting worse it seems on this gluten-free diet. They have me not eating so many different foods it pathitic. This weight lose Has to Stop

I agree with the others that you have already been diagnosed. You have recieved some good advice already but the one thing I feel is important to add is that after you have been STRICTLY gluten free for a few months the sensitivities to some of the stuff you react to now could very well lessen or even disappear. That can apply to not only foods but also to environmental allergins as well.

Your system is in hyperdrive right now, it is fighting a full body antibody reaction that permeates every tissue including the brain and muscles. You say you are continueing to lose weight on the diet, I do not know how long you have been on it but it does take a while for your system to recover. If you are trying to eat too many mainstream or even gluten free processed foods that can slow things down a bit. You will heal quickest with a diet of fresh veggies, fruits and meats. Beans and Rice and try some of the 'butters' made of things like cashews, sunflower seeds and almonds. If after a few months completely gluten-free, including cosmetics and shampoos and such you are still having problems or if your problems excalate to the point where your doctor is concerned then you may very well need testing to rule out other problems that may exist. You are however definately celiac, I have never heard of a false positive, ever.

One last note, the withdrawl aspect of gluten can make the first month or so very hard to deal with. It can lead to many ups and downs emotionally and even some physical symptoms. This is not unusual and it will go away. Most of us have been through it and if you need to vent while going through it feel free. Don't give up, this is hard but you can do it and you will have a much happier, healthier and longer life for it.

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
In regard to a biopsy, my old doctor told me that it would NOT be necessary to go back on a gluten diet to have one done. The villi are damaged enough as it is, and the antibodies that they will test the sample for, will be there whether you eat gluten or not.

My understanding is, this is not so! The antibodies should not be be there if you are not ingesting anything to make your body produce those antibodies!! The antibodies are what attack our bodies and make us sick, so that is the whole reason we stop eating gluten!

As far as damaged villi are concerned, I have read studies with varying results, and it looks like villi can begin to heal within days. It IS necessary to go back on gluten to have an accurate biopsy (or as accurate as possible, since they are not that accurate anyway).

I'd bet that one major reason so many people have had negative biopsies even though they have every celiac symptom in the book is that their doctors gave them this misinformation that they would not need to go back on gluten.

isiskingdom Contributor
isiskingdom
Posted
  • Author

I have been completley gluten-free since March. I eat meats, fruit and veggies and eat almond butter and have no tolerance for dariy at all right now. I am 5'7 and 114 pounds I went to Kohl's to find a pair of pants and grabbed a size 3 they fit and were a little loose come to find out they were a 1!!! I started to cry I have NEVER been smaller then a 3 and that was before my child. I am very concerned that I will end up in the hospital soon I am Very weak. I can't wait to go to this new doctor and hope they figure on wth is going on.

I agree with the others that you have already been diagnosed. You have recieved some good advice already but the one thing I feel is important to add is that after you have been STRICTLY gluten free for a few months the sensitivities to some of the stuff you react to now could very well lessen or even disappear. That can apply to not only foods but also to environmental allergins as well.

Your system is in hyperdrive right now, it is fighting a full body antibody reaction that permeates every tissue including the brain and muscles. You say you are continueing to lose weight on the diet, I do not know how long you have been on it but it does take a while for your system to recover. If you are trying to eat too many mainstream or even gluten free processed foods that can slow things down a bit. You will heal quickest with a diet of fresh veggies, fruits and meats. Beans and Rice and try some of the 'butters' made of things like cashews, sunflower seeds and almonds. If after a few months completely gluten-free, including cosmetics and shampoos and such you are still having problems or if your problems excalate to the point where your doctor is concerned then you may very well need testing to rule out other problems that may exist. You are however definately celiac, I have never heard of a false positive, ever.

One last note, the withdrawl aspect of gluten can make the first month or so very hard to deal with. It can lead to many ups and downs emotionally and even some physical symptoms. This is not unusual and it will go away. Most of us have been through it and if you need to vent while going through it feel free. Don't give up, this is hard but you can do it and you will have a much happier, healthier and longer life for it.

gfpaperdoll Rookie
gfpaperdoll
Posted

are you eating anything else besides fruits, veggies, meat, seafood, nuts, seeds, eggs, & rice???

If you are eating any other grains i would not eat them at all. I also would not be drinking any sodas, or coffee. no candy bars, really no processed anything...

try some 100% welch's grape juice...

Are you eating a lot of beans & potatoes? if the answer is yes, to that, I would only eat sweet potatoes, & skip the beans for awhile - they are a high lectin food...

isiskingdom Contributor
isiskingdom
Posted
  • Author

Can't eat seafood,not eating many beans eggs do not sit well, do not drink soda or coffee, no grains besides rice.

are you eating anything else besides fruits, veggies, meat, seafood, nuts, seeds, eggs, & rice???

If you are eating any other grains i would not eat them at all. I also would not be drinking any sodas, or coffee. no candy bars, really no processed anything...

try some 100% welch's grape juice...

Are you eating a lot of beans & potatoes? if the answer is yes, to that, I would only eat sweet potatoes, & skip the beans for awhile - they are a high lectin food...

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