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Diagnosed By Celiac disease


aus1708

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aus1708 Rookie

Today I was diagnosed by celiac disease. I just got my reports and my TTG level is as high as 80. I can only met my GI after 4 days. I am not feeling sick and neither I have any major symptoms or fatigue. I am able to do all my normal daily activity. The only thing which is different is bloating feeling in my stomach. 

I am very tensed after seeing my reports since I am very heavy wheat eater. I just want to know from you guys than is Celiac manageable just by removing gluten from your diet. Can some one tell me if they still get the symptoms or have other issues after going on gluten free diet. Please share your experience. Any sort of guidance is most welcome


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tessa25 Rising Star

For most people celiac is manageable by just removing gluten from the diet. Keep eating gluten until all testing is done. Your doctor will probably want to do an endoscopy to confirm celiac.

What are your favorite foods with wheat? I can give you some equivalents so that you're not in shell shock. For example, Barilla makes a great gluten-free pasta. It's just pickier about how long it takes to cook. The spaghetti is the easiest to get right. Followed by the fettuccine.

Victoria1234 Experienced
57 minutes ago, aus1708 said:

Today I was diagnosed by celiac disease. I just got my reports and my TTG level is as high as 80. I can only met my GI after 4 days. I am not feeling sick and neither I have any major symptoms or fatigue. I am able to do all my normal daily activity. The only thing which is different is bloating feeling in my stomach. 

I am very tensed after seeing my reports since I am very heavy wheat eater. I just want to know from you guys than is Celiac manageable just by removing gluten from your diet. Can some one tell me if they still get the symptoms or have other issues after going on gluten free diet. Please share your experience. Any sort of guidance is most welcome

Don't be worried! Cutting out gluten completely is all you need to do. Many people see their doctors regularly to monitor vitamin and iron levels, and repeat some of the celiac testing to show how well they are doing.

I personally had many symptoms, and it took about 2 months for them to all go away. For some it takes longer as the learning curve is steep for the diet. Gluten is hidden in many foods, and learning what it's called can take a while. So is eating out... you will have to learn what to ask when you eat out, and they make mistakes with cross contamination in restaurants a lot. You'll have to learn who to trust.

but most people will recommend to eating Whole Foods and not eating out for the first 6 months to heal your body faster. Just because you only have bloating doesn't mean there isn't damage inside your body. 

Oh yes, milk is something you might be intolerant to for 6 to 12 months. Your inside damage can make it so you can't digest and absorb it properly, at least the protein in milk, and it definitely can cause bloating amongst other things.

Wecome to the board! There is a newbie section that can explain all this and much more. This site is like a godsend to celiac sufferers.

Ps keep eating gluten! Your gi is probably going to order a test to check your upper insides, so you need to keep eating it in order to have the damage to show. You don't want to heal first then do the test. Sounds stupid I know!

aus1708 Rookie
15 hours ago, Victoria1234 said:

Don't be worried! Cutting out gluten completely is all you need to do. Many people see their doctors regularly to monitor vitamin and iron levels, and repeat some of the celiac testing to show how well they are doing.

I personally had many symptoms, and it took about 2 months for them to all go away. For some it takes longer as the learning curve is steep for the diet. Gluten is hidden in many foods, and learning what it's called can take a while. So is eating out... you will have to learn what to ask when you eat out, and they make mistakes with cross contamination in restaurants a lot. You'll have to learn who to trust.

but most people will recommend to eating Whole Foods and not eating out for the first 6 months to heal your body faster. Just because you only have bloating doesn't mean there isn't damage inside your body. 

Oh yes, milk is something you might be intolerant to for 6 to 12 months. Your inside damage can make it so you can't digest and absorb it properly, at least the protein in milk, and it definitely can cause bloating amongst other things.

Wecome to the board! There is a newbie section that can explain all this and much more. This site is like a godsend to celiac sufferers.

Ps keep eating gluten! Your gi is probably going to order a test to check your upper insides, so you need to keep eating it in order to have the damage to show. You don't want to heal first then do the test. Sounds stupid I know!

 

aus1708 Rookie
On 6/24/2017 at 8:29 PM, Victoria1234 said:

Don't be worried! Cutting out gluten completely is all you need to do. Many people see their doctors regularly to monitor vitamin and iron levels, and repeat some of the celiac testing to show how well they are doing.

I personally had many symptoms, and it took about 2 months for them to all go away. For some it takes longer as the learning curve is steep for the diet. Gluten is hidden in many foods, and learning what it's called can take a while. So is eating out... you will have to learn what to ask when you eat out, and they make mistakes with cross contamination in restaurants a lot. You'll have to learn who to trust.

but most people will recommend to eating Whole Foods and not eating out for the first 6 months to heal your body faster. Just because you only have bloating doesn't mean there isn't damage inside your body. 

Oh yes, milk is something you might be intolerant to for 6 to 12 months. Your inside damage can make it so you can't digest and absorb it properly, at least the protein in milk, and it definitely can cause bloating amongst other things.

Wecome to the board! There is a newbie section that can explain all this and much more. This site is like a godsend to celiac sufferers.

Ps keep eating gluten! Your gi is probably going to order a test to check your upper insides, so you need to keep eating it in order to have the damage to show. You don't want to heal first then do the test. Sounds stupid I know!

Thanks Victoria123r for your suggestion. I have performed the blood test confirming of Celiac and even the Biopsy report suggested Villous Atropy due to gluten. From pat 2 days I have left eating the food with gluten and the burping issue is now fine. Also I had a problem of liquid stools from past week for which I showed to gastro is also over. It was not like diarrhea but once a day.  I am going to met my GI on wednesday and wi;; sede what he suggest.

 

It seems there is lots of thing which i need to learn about celiac and need to change my lifestyle and eating habits. Here in India not many people are aware of this disease(It was new for me as always) and I am having bit difficulty to explain to people. Also there are no scope for gluten free food in Grocery stores so I have to take care of my own foods. Is there anyone who lives in India, Mumbai or Bangalore. If yes, please suggest me few gluten free food shop.

kareng Grand Master
14 minutes ago, aus1708 said:

Thanks Victoria123r for your suggestion. I have performed the blood test confirming of Celiac and even the Biopsy report suggested Villous Atropy due to gluten. From pat 2 days I have left eating the food with gluten and the burping issue is now fine. Also I had a problem of liquid stools from past week for which I showed to gastro is also over. It was not like diarrhea but once a day.  I am going to met my GI on wednesday and wi;; sede what he suggest.

 

It seems there is lots of thing which i need to learn about celiac and need to change my lifestyle and eating habits. Here in India not many people are aware of this disease(It was new for me as always) and I am having bit difficulty to explain to people. Also there are no scope for gluten free food in Grocery stores so I have to take care of my own foods. Is there anyone who lives in India, Mumbai or Bangalore. If yes, please suggest me few gluten free food shop.

There is a lot of Celiac research done by Researchers from India.  The latest national Celiac symposium was in India.  Maybe if you look at the site , you can find which hospitals have Celiac programs.  Check their websites or call for info?

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Victoria1234 Experienced
40 minutes ago, aus1708 said:

Thanks Victoria123r for your suggestion. I have performed the blood test confirming of Celiac and even the Biopsy report suggested Villous Atropy due to gluten. From pat 2 days I have left eating the food with gluten and the burping issue is now fine. Also I had a problem of liquid stools from past week for which I showed to gastro is also over. It was not like diarrhea but once a day.  I am going to met my GI on wednesday and wi;; sede what he suggest.

 

It seems there is lots of thing which i need to learn about celiac and need to change my lifestyle and eating habits. Here in India not many people are aware of this disease(It was new for me as always) and I am having bit difficulty to explain to people. Also there are no scope for gluten free food in Grocery stores so I have to take care of my own foods. Is there anyone who lives in India, Mumbai or Bangalore. If yes, please suggest me few gluten free food shop.

You are lucky so many of your favorite foods are going to be gluten free already. Except of course for your delicious breads. 

You will have to watch eating out. Meaning, with many breads cooked in the tandoori oven, you can't have anything also cooked in the same oven. It will be cross contaminated. So it will be best for you to cook most, if not all, your foods at home.

feel free to post any of your favorite recipes for us here. Indian food is my personal favorite type of food in the world!


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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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