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Seeking

Should I get retesed

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Greetings:

In 2010 I had a blood test tTG  IgA with a reading of 101. I have not gone on to get the biopsy done because truthfully I will do anything to avoid a needle. But, also, it seemed pointless since the blood test was so high.

My aunt had severe celiac and that is why I asked to be tested. I was/am fairly asymptomatic although I lost a lot of weight the previous year after a serious knee injury. I have found a gluten free diet to be fairly easy since I don't eat baked goods and very little bread.

I have avoided gluten almost faithfully for the past 5 years although I am not a stickler about cross contamination. I believe when I have eaten gluten accidentally the reaction shows up later in the form of an outbreak on my feet.  I find it hard to pinpoint where I may have eaten the gluten. Several days ago I accidentally ate a flour tortilla and had an outbreak the next day but no other symptoms. 

Am I being irresponsible not getting the biopsy? I am okay with being gluten free but wonder if the blood test could be wrong. Should I get another blood test?

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You're not being irresponsible by not getting the biopsy but you are being irresponsible by not being a stickler about cross contamination. You are only hurting yourself. You are doing damage. You put yourself at increased risk of cancer and other autoimmune diseases. You are damaging your gut and that is serious business. You are risking osteoporosis and a host of other things.

You have celiac disease. There is no going halfway on the diet. there is no going 99% of the way on the diet. You really owe it to yourself to be strict. 

Your aunt was celiac, your blood test was very high. Why do you doubt you have celiac? There is no need for another blood test. 

Please read the thread in this link and also follow the links contained in that thread.

 

Also please read these two threads I've linked below.

 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Wow. That was a lot of reading but I did get it. I thought I knew about Celiac but I need to pay closer attention. For example, I recently started eating regular oatmeal and felt bad. It took a few days to put the pieces together and research it to discover there is an issue of cross contamination. I thought I'd read up on it properly before.

Thank you so much for responding to me. You are absolutely right. I need to pay more attention.  I think my doubt is wishful thinking and denial. It's also that I was told the biopsy was the definitive diagnosis and I hadn't had it done.

Sad to say another factor was that I felt like I couldn't say I had celiac because I hadn't had the biopsy and that maybe I was being an eccentric crank to others--or a fad follower.

BUT. I've got it now. I will follow this forum and make sure I am current on what's going on.

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Oh I'm so glad you feel that way. I was worried that I came off as a little too harsh with you & that was NOT my intent. 

I wouldn't worry a bit about not having an intestinal biopsy and saying you have celiac. You do have celiac. I think all of us are somewhat defensive since the whole "fad" thing hit so big but we have to protect our health because no one else is going to do it for us. 

I get the wishful thinking/denial thing. Totally! I just got a second crash course in it recently by discovering that I am one of the roughly 8% of celiacs who really & truly reacts to even certified gluten-free oats. I did NOT want to believe it. I even tried to convince myself it was psychosomatic. :rolleyes:

 

Welcome to the board!


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Sorry about the oats. I decided I don't care enough about oats to buy certified gluten-free. I'm too cheap. I am fortunate to be able to eat dairy. I don't swap out gluten-free snacks either. I don't need them and many are empty calories. I discovered pretzels awhile back and couldn't come to terms with eating cornstarch.

Embracing a gluten-free diet has probably been easier for me than others because I have eaten in a healthy manner for many years. There's plenty of good food out there. Abstinence is a small price to pay for a potentially deadly disease. A whole lot better than dealing with many other diseases which require medication etc.

Again, I appreciate your input and you will be seeing more of me.

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Oh you're so welcome! I agree with everything you said. We ate pretty healthy too, myself more so than the hubs (he likes his TV snacks). Whole food is good! I love it! It's the way I was raised. 

Yes, if one has to have a disease, this one is preferable. 

If you want, after you've been real strict with the diet for a year, then you can go get retested to see where your tTG IgA numbers are. They will go down & eventually not be positive at all. But then you said you would do anything to avoid a needle didn't you? I was only suggesting because you mentioned you really don't have symptoms other than the outbreak on your feet. You might find that you really do have symptoms you didn't know about once you've been strict for a while. Things you thought were normal or "just you" might just up & disappear. More than 50% of dx'd celiacs did not present with any GI symptoms. There are 300 symptoms associated with celiac disease. Here's a list:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Oh you're so welcome! I agree with everything you said. We ate pretty healthy too, myself more so than the hubs (he likes his TV snacks). Whole food is good! I love it! It's the way I was raised. 

Yes, if one has to have a disease, this one is preferable. 

If you want, after you've been real strict with the diet for a year, then you can go get retested to see where your tTG IgA numbers are. They will go down & eventually not be positive at all. But then you said you would do anything to avoid a needle didn't you? I was only suggesting because you mentioned you really don't have symptoms other than the outbreak on your feet. You might find that you really do have symptoms you didn't know about once you've been strict for a while. Things you thought were normal or "just you" might just up & disappear. More than 50% of dx'd celiacs did not present with any GI symptoms. There are 300 symptoms associated with celiac disease. Here's a list:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Oh you're so welcome! I agree with everything you said. We ate pretty healthy too, myself more so than the hubs (he likes his TV snacks). Whole food is good! I love it! It's the way I was raised. 

Yes, if one has to have a disease, this one is preferable. 

If you want, after you've been real strict with the diet for a year, then you can go get retested to see where your tTG IgA numbers are. They will go down & eventually not be positive at all. But then you said you would do anything to avoid a needle didn't you? I was only suggesting because you mentioned you really don't have symptoms other than the outbreak on your feet. You might find that you really do have symptoms you didn't know about once you've been strict for a while. Things you thought were normal or "just you" might just up & disappear. More than 50% of dx'd celiacs did not present with any GI symptoms. There are 300 symptoms associated with celiac disease. Here's a list:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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On November 3, 2015 at 6:36:33 PM, Seeking said:

  I am okay with being gluten free but wonder if the blood test could be wrong. Should I get another blood test?

You probably know this, but just in case - if you have another blood test after you've done a good job being gluten free, it will probably be negative.  But that does not mean the first one was wrong.  It means you have celiac and are keeping it under control with your diet.

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Goodness--what a list! Hangnail? I certainly have a number of the issues on there. Will be interesting to see which ones disappear.

I am getting educated here. Just called my favorite pizza (gluten-free) to see if they cook and prepare them separately. No they don't. And, I realize that while I haven't eaten gluten I have had some poor habits such as pushing the piece of bread served to one side or picking the croutons off and eating whatever it is. Also, I disregard soy sauce because it seems so minimal. What a mess. I guess I really will become a pain in the neck now.

Thanks for the list.

 

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14 hours ago, RMJ said:

You probably know this, but just in case - if you have another blood test after you've done a good job being gluten free, it will probably be negative.  But that does not mean the first one was wrong.  It means you have celiac and are keeping it under control with your diet.

I did know. Thanks so much.

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6 hours ago, Seeking said:

Goodness--what a list! Hangnail? I certainly have a number of the issues on there. Will be interesting to see which ones disappear.

I am getting educated here. Just called my favorite pizza (gluten-free) to see if they cook and prepare them separately. No they don't. And, I realize that while I haven't eaten gluten I have had some poor habits such as pushing the piece of bread served to one side or picking the croutons off and eating whatever it is. Also, I disregard soy sauce because it seems so minimal. What a mess. I guess I really will become a pain in the neck now.

Thanks for the list.

 

Sorry for giving you such long reading assignments LOL! Seriously, I had blepharitis that cleared up & disappeared after going gluten free. At the time, I had no idea it could be associated with celiac. Who knew? There's a trick when in public dining & they bring you a salad with croutons AFTER you told them not to. You bury a sugar packet underneath where it can't be seen. Then when they bring your salad back you check for the sugar packet - if it's there, they just picked the croutons off & brought you the same salad back. But there's actually an easier way than that -- you just dump dressing all over the salad & that way there's no way they can bring you the same salad back after picking croutons off. The same applies to meat or a steak when they've put bread on your plate -- put steak sauce or catsup all over it. That makes them have to give you a new steak (or whatever meat) on a clean plate rather than just removing the piece of bread & bringing your contaminated meal back to you. In short, you have to mess the contaminated food up so it doesn't get brought back to you.

I'm not a fan of soy sauce so I've never paid attention to the gluten free soy sauces out there but just put it in the search box for the site & you'll come up with threads where you'll find the ones that are safe for celiacs.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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