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shad

My Blood test came back Positive for celiac, very confused now

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I just joined this message board, there is a lot to read about celiac but i am very scared and there are so many unknowns. 

I am 35 and I have been experiencing stomach issues for the past 8 years. I have gone to a gastrointrologist a couple times, and every time i was sent home saying i have IBS! he did mention you can go on different diets to see how you feel but I never followed thru with it.  stomach Issues would come and go, for example my stomach would work great for a period of 4 months and then if i get food poisoning or something else goes wrong, it would be bad for the next 5 to 6 months. last summer I expericened weight loss and hair loss, and I eat a lot and i have been a very high energy person. I went to the doctor again and a Dermatologist, and he says the hair loss is due to recent stress. i didnt think of it too much and life went on. I should say that I travel a lot, around 6 months a year.  i felt really tired at times within the past 6 months tho, I would never fall asleep early but I have been sleeping early for the past few months. I noticed my hair is falling out more than before. This time when i got back home two weeks ago, i went to the doctor to do a physical. he tested me for everything including HIV, H C, ... iron defecency and list goes on, everything came back as ok. I told the doctor that I feel like no matter how much i eat the food is not being absorbed. He said, Let me just check you for Celiac too. 4 days a later the test comes back Positive. Now it's been 8 days since I got diagnosed. I have been Gluten Free since 8 days ago, but they want to do a Biopsy next Friday which is in 6 days, do i need to do the Biopsy? is the blood test not 100% accurate if it comes back as positive?  and if i am going to do the test next Friday, I should be eating normal again with lots of Gluten? 

 

I really scared and confused. I would hate to have a tube down my throat if it's not necessary. 

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4 minutes ago, shad said:

I just joined this message board, there is a lot to read about celiac but i am very scared and there are so many unknowns. 

I am 35 and I have been experiencing stomach issues for the past 8 years. I have gone to a gastrointrologist a couple times, and every time i was sent home saying i have IBS! he did mention you can go on different diets to see how you feel but I never followed thru with it.  stomach Issues would come and go, for example my stomach would work great for a period of 4 months and then if i get food poisoning or something else goes wrong, it would be bad for the next 5 to 6 months. last summer I expericened weight loss and hair loss, and I eat a lot and i have been a very high energy person. I went to the doctor again and a Dermatologist, and he says the hair loss is due to recent stress. i didnt think of it too much and life went on. I should say that I travel a lot, around 6 months a year.  i felt really tired at times within the past 6 months tho, I would never fall asleep early but I have been sleeping early for the past few months. I noticed my hair is falling out more than before. This time when i got back home two weeks ago, i went to the doctor to do a physical. he tested me for everything including HIV, H C, ... iron defecency and list goes on, everything came back as ok. I told the doctor that I feel like no matter how much i eat the food is not being absorbed. He said, Let me just check you for Celiac too. 4 days a later the test comes back Positive. Now it's been 8 days since I got diagnosed. I have been Gluten Free since 8 days ago, but they want to do a Biopsy next Friday which is in 6 days, do i need to do the Biopsy? is the blood test not 100% accurate if it comes back as positive?  and if i am going to do the test next Friday, I should be eating normal again with lots of Gluten? 

 

I really scared and confused. I would hate to have a tube down my throat if it's not necessary. 

You need to I eat a couple of crackers worth of gluten a day until the endoscopy.  I don't think 8 days gluten-free will be a problem.  

It really depends on how " high" your blood work is.  Usually they like to do an endoscopy and a colonoscopy, just to make sure there are no other issues and see how bad the damage is.

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Standard is blood test then endoscope you can read up here https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
 

But looks like your probably have it, keeping eating gluten daily til testing done, might as well bucketlist your foods you will have to remove as with this disease you can not cheat, and while almost everything can be made gluten free now days, you will still surely miss eating out so see about knocking out those crazy meals you might have been wanting to try.

You can read up more on the transition here.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
And while a whole foods diet is suggested at first, with removal of dairy and oats here is a list of gluten free alternatives I have composed lessen your worries about stuff.
https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

 

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I just ate a bite or two of bread this morning. is that good enough for my test which is in 5 days? should I eat more gluten? 

my understanding (from what I have been reading) is that the blood test is pretty accurate if it comes positive tho.  it's less accurate if it is negative. 

is the endoscopy for biopsy or checking for damages or both? will it take a long time for Villi to heal back? 

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I believe it's one entire slice of bread every day , maybe two.

The endoscopy is easy.

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The celiac blood tests are good, but not perfect.  Despite a decade of researchers trying to use just the celiac antibodies tests in order to avoid the endoscopy which is more invasive, the reality is that the British and American GI Associations and all the celiac centers in the world, still rely on the endoscopy for a firm diagnosis.  

There are reasons why the endoscopy may not be ordered.  You could be at death’s door and any procedure might kill you because you are so sick.  You might not have access to a GI.  You might not have insurance.  You might have very long wait times (e.g. areas in Canada).  

If you can, get it.  It can set a benchmark for celiac damage.  It can also discover that you might have another concurrent illness like cancer, SIBO, H. Pylori or Crohn’s.  Odds are that you do not have cancer, but it has happened to members.  

The villi can grow back in just a few weeks.  Typically symptoms can last longer usually because 1) there is a steep learning curve to the gluten-free diet and 2) damage can be systemic (e.g. neurological).  

Eat gluten.  Plenty.  Between my blood tests and endoscopy, I ate all my favorite gluten filled foods.  In reality one or 2 slices of bread,  (make it fresh sourdough with blobs of sweet butter, please) should be plenty.   My gluten fling,  was a fond farewell.  

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Things i wish i was told when diagnosed:

Get an extensive vitamin panel done after you start your gluten free diet to see where you need supplements. You may have leaky gut.

Get a stool sample done to check your flora balance, you may need probiotics.

Check other genetic factors like vitamin converson MTHFR and B6, etc

Watch for dry stomach as well as acidic problems. Mine was dry and drs made it worse. All i needed was ginger tea with every meal not prilosec.

Watch for continued symptoms being food intollerences. I kept a food diary and linked all the foods still giving me gi upset after gluten free with foods i used to eat with gluten. I.e. pasta sauce, olive oil.

Realize many symptoms not gi may be malnutrition or healing of the gi vegas nerve, psychological as well as physical. In time, months or years things clear up.

Gluten free does not mean 100% gluten free. Get to know one ingredient foods and how use rice cookers, crock pots, instant cookers. Freezing food and having easy to grab foods are important to beat cravings and feelings of food fear.

Lastly hang in there and love yourself harder than ever. You are your own hero/heroine and your body is amazing at healing itself once gluten is gone. Stay tuned here the people are a priceless resource.

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14 minutes ago, pikakegirl said:

Gluten free does not mean 100% gluten free.

What?????? I think there must be a typo here. Gluten free DOES mean you need to be 100% gluten free; not 99%, not 98%, not 95%.

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Thanks everyone, I already feel better. I don't know if I have many symptoms or it's just that I'm not aware of them. I will eat more gluten for the next couple days , I was gluten free for only 8 days anyways, before that I used to eat at least 8 slices of bread a day. 

The main symptom that I have is my hair is falling out in bunches, but that could be due to male pattern baldness too I guess. It is falling a lot more in topthan the back. My stomach is usually fine too, it's only when I ate some specific foods like specific fruits or some dairy that ( milk rarely made my stomach upset) or some juices. But I did find it that I do have a very sensitive stomach compared to 10 years ago. I should also say I pretty much never vomit or never really feel nauseous  except if I get food poisoning . My stool is usually never hard tho , yet I don't get diarrhea neither. And if i get diarrhea it's one time and that's it. No rushing back to the bathroom. 

My family doc says my iron and b13 levels came back normal too, I'm taking some gluten free supplements since last week.

I really appreciate the help. I'll definitely do the endoscopy and get back to you with results next week 

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54 minutes ago, squirmingitch said:

What?????? I think there must be a typo here. Gluten free DOES mean you need to be 100% gluten free; not 99%, not 98%, not 95%.

I'm guessing but I think what she means is that foods tested gluten-free are supposed to be less than 20 PPM.  But less than 20 PPM is not the same as zero PPM.  So you can get some gluten even with tested gluten-free foods.  Then again, maybe I am putting words in pikelakegirl's mouth..?

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13 minutes ago, GFinDC said:

I'm guessing but I think what she means is that foods tested gluten-free are supposed to be less than 20 PPM.  But less than 20 PPM is not the same as zero PPM.  So you can get some gluten even with tested gluten-free foods.  Then again, maybe I am putting words in pikelakegirl's mouth..?

Yes, I just figured it needed some clarification. Maybe pikakegirl will come back & do that.

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30 minutes ago, shad said:

Thanks everyone, I already feel better. I don't know if I have many symptoms or it's just that I'm not aware of them. I will eat more gluten for the next couple days , I was gluten free for only 8 days anyways, before that I used to eat at least 8 slices of bread a day. 

The main symptom that I have is my hair is falling out in bunches, but that could be due to male pattern baldness too I guess. It is falling a lot more in topthan the back. My stomach is usually fine too, it's only when I ate some specific foods like specific fruits or some dairy that ( milk rarely made my stomach upset) or some juices. But I did find it that I do have a very sensitive stomach compared to 10 years ago. I should also say I pretty much never vomit or never really feel nauseous  except if I get food poisoning . My stool is usually never hard tho , yet I don't get diarrhea neither. And if i get diarrhea it's one time and that's it. No rushing back to the bathroom. 

My family doc says my iron and b13 levels came back normal too, I'm taking some gluten free supplements since last week.

I really appreciate the help. I'll definitely do the endoscopy and get back to you with results next week 

You might find yourself surprised at things you thought were just normal actually weren't. I think most of us have had at least a few of those. 

Did you know that over 50% of dx'd celiacs did not present with GI issues? GI issues are not the only symptoms of celiac although most people believe that & you will see it repeatedly unto death on the internet. And then there are what are called "silent celiacs" who have no symptoms at all. 

BTW, that food poisoning you keep mentioning? It just might not be food poisoning; at least not in the general definition of it.

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1 hour ago, squirmingitch said:

You might find yourself surprised at things you thought were just normal actually weren't. I think most of us have had at least a few of those.

This is something I wish that more people would consider. It's why it's so hard to get people tested who have less obvious symptoms. If you had asked me 4-5 years ago if I was in good health, I would have said yes without hesitation. I didn't seem to have any serious health problems, I was a high level athlete (how could I train/compete at a high level if I was not in optimal health?). Why would I think any different?

It took being gluten-free for a while for me to realize what being healthy actually felt like. For example, I didn't know what it was like to not have a stomach ache because I'd always had one. 20+ years of stomach ache! I had nothing to compare the feeling with. I only realized when my stomach stopped hurting that I'd never felt that good in my entire life. When it comes back due to accidental glutenings, I can't fathom how I functioned like this before.

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Oops. Thanks GFunDC for saying what i meant. I should have typed gluten free food products are no guaranteed 100% gluten-free since up to 20ppm are allowed by law. I am silent celiac so i can not rely on symptoms to telk me i messed up. Therefore i am super careful to the point of never eating out or eating food i didnt prepare myself. Has worked great over 10 yrs so far. Sorry about the confusion.

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5 hours ago, pikakegirl said:

Oops. Thanks GFunDC for saying what i meant. I should have typed gluten free food products are no guaranteed 100% gluten-free since up to 20ppm are allowed by law. I am silent celiac so i can not rely on symptoms to telk me i messed up. Therefore i am super careful to the point of never eating out or eating food i didnt prepare myself. Has worked great over 10 yrs so far. Sorry about the confusion.

The internet is a great communication dis-abler. :)  Thanks for the clarification!  

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11 hours ago, pikakegirl said:

Oops. Thanks GFunDC for saying what i meant. I should have typed gluten free food products are no guaranteed 100% gluten-free since up to 20ppm are allowed by law. I am silent celiac so i can not rely on symptoms to telk me i messed up. Therefore i am super careful to the point of never eating out or eating food i didnt prepare myself. Has worked great over 10 yrs so far. Sorry about the confusion.

Thanks for clarifying dear. 

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Posted (edited)
On 22/04/2018 at 9:58 PM, apprehensiveengineer said:

This is something I wish that more people would consider. It's why it's so hard to get people tested who have less obvious symptoms. If you had asked me 4-5 years ago if I was in good health, I would have said yes without hesitation. I didn't seem to have any serious health problems, I was a high level athlete (how could I train/compete at a high level if I was not in optimal health?). Why would I think any different?

It took being gluten-free for a while for me to realize what being healthy actually felt like. For example, I didn't know what it was like to not have a stomach ache because I'd always had one. 20+ years of stomach ache! I had nothing to compare the feeling with. I only realized when my stomach stopped hurting that I'd never felt that good in my entire life. When it comes back due to accidental glutenings, I can't fathom how I functioned like this before.

Very true, I think I have taken steps to think that a upset stomach is normal , many times I would play soccer with discomfort or go on a date being extremely bloated but I thought it's normal for people with IBS!

I have been eating a little bit of gluten for the past couple days. I feel a lot more tired than a few days ago and one day I slept 12 hours! 

When I went gluten free for 8 days , I felt like my energy level went up, I felt better and even my sex drive sky rocketed. Not sure if that 8 days really made a difference or it's just psychological or both.

I read a lot online about this condition and the more I read the scarier it gets. I guess my social life will never be the same. I can't travel freely anymore :-(

It seems this a very serious condition, but what I don't understand is that most people with celiac are never diagnosed so how do they live their entire life not knowing with such severe consequences

Right now I really looking forward to going back to a gluten free diet, my endoscopy is on Friday.

Edited by shad

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OP - I don't mean to complicate matters, but from my experience, an endoscopy won't necessarily detect celiac disease in all cases.

I tested positive via a blood test back in 2013 when I still had high levels of antibodies in my system, and I wasn't surprised because my symptoms were so specific - especially my abruptly dying tooth enamel. But when I finally got health insurance a few years later, I tested negative via the more invasive procedures.  Now doctors treat me like a hypochondrac merely because the biopsy came up negative. They make comments about my "lifestyle" and give me print-outs that include the recommendation to eat a balanced diet with lots of "healthy" whole grains.

I'd say that if you're eating gluten and have only been gluten-free for about a week, you shouldn't worry too much about a false negative. Apparently it isn't all THAT uncommon though, so I wanted to give you a heads-up in case that happens.

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I mean I may come back negative because I was gluten free for a week? 

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On 4/22/2018 at 6:46 PM, squirmingitch said:

What?????? I think there must be a typo here. Gluten free DOES mean you need to be 100% gluten free; not 99%, not 98%, not 95%.

no... they meant the label may say gluten free, but the food may not be...

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17 hours ago, frieze said:

no... they meant the label may say gluten free, but the food may not be...

I doubt it. Just make sure you're continuing to eat gluten in the meantime.

I shouldn't have said anything - I'm horrifically sick and no doctor will believe me, and even a gastroenterologist had never heard of the tooth enamel defects and instead implied that I don't brush my teeth, so I tend to end up relating everything to my own bad experiences. Sorry about that.

Yeah though - false negatives aren't that uncommon, even with biopsies. I wouldn't worry about it unless it happens though. I just wanted you to realize that if you do test negative, it isn't necessarily the be-all, end-all diagnosis.

On edit: I just noticed I quoted the wrong post. Oops. I was referring to OP's question, not the issue of gluten ppm in food.

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Hey everyone

I'm still waiting for my biopsy results

I got a copy of my blood work tho and my ttg IgG is 25 and everything else seems to be in the normal range 

I can post a copy of it here 

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I got my results back and everything is negative.
Two weeks ago i was tested for celiac and the blood came back as 
IGA serum 3.5  range .69 to 3.82
DGA IGG SERUM 7. <10
DGA IGA 5 <10
TTG IGA 8 <20
TTG IGG. 25  < 20
      LESS THAN 20 NEGATIVE
      OVER 25 POSITIVE 
       20 TO 25 BORDERLINE

When I got my results above I immediately went gluten free, eating at home only. I was gluten free for around 10 days then I started to eat gluten again for 5 days prior to my endoscopy ( just one two slices of bread a day. 
The doctor who performed my endoscopy said my villi looks beautiful and no damage or inclination is present . 
The biopsy results came back as 
H pylori negative
And celiace negative

Notes of biopsy: 
No significant abnormalities
No antral type mucosa identified
Negative for intestinal metaplasia or dysplastic change 
Villous height is preserved, no active inflammation or parasites are seen

I have had a sensetive stomach for almost 8 years , not sure what kind of food causes it but I do get bad bloating and cramps all the time. Tho I don't recall once eating  a price of bread and feel sick after. It is usually food that is all mixed up for example If eat at a buffet I usually go to the bathroom right after within 45 min 
I'm a 35 year old male with a very active life style. How do those # s look like , I'm going off gluten regardless for now. 

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1 hour ago, shad said:

I got my results back and everything is negative.
Two weeks ago i was tested for celiac and the blood came back as 
IGA serum 3.5  range .69 to 3.82
DGA IGG SERUM 7. <10
DGA IGA 5 <10
TTG IGA 8 <20
TTG IGG. 25  < 20
      LESS THAN 20 NEGATIVE
      OVER 25 POSITIVE 
       20 TO 25 BORDERLINE

When I got my results above I immediately went gluten free, eating at home only. I was gluten free for around 10 days then I started to eat gluten again for 5 days prior to my endoscopy ( just one two slices of bread a day. 
The doctor who performed my endoscopy said my villi looks beautiful and no damage or inclination is present . 
The biopsy results came back as 
H pylori negative
And celiace negative

Notes of biopsy: 
No significant abnormalities
No antral type mucosa identified
Negative for intestinal metaplasia or dysplastic change 
Villous height is preserved, no active inflammation or parasites are seen

I have had a sensetive stomach for almost 8 years , not sure what kind of food causes it but I do get bad bloating and cramps all the time. Tho I don't recall once eating  a price of bread and feel sick after. It is usually food that is all mixed up for example If eat at a buffet I usually go to the bathroom right after within 45 min 
I'm a 35 year old male with a very active life style. How do those # s look like , I'm going off gluten regardless for now. 

Well you probably just have food intolerance or sensitivities, keep a food diary. Also it could be a enzyme issue, try taking digestive enzymes with your food to break them down easier.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

 

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I will look into food alegies 

Does anyone know of a good lab in North America to test for alegies? 

Also my ttg IgG # is borderline high, should I be worried about that?

My IGA level is pretty normal tho

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