New here - upcoming gastro appt!

[Justaprairiegirl]

Hi everyone,

I’m so glad to have found this community! My journey to diagnosis has been many years coming (as I’m sure it was for many of you), and I’m so excited to (hopefully) soon know the cause of my health issues.

I have an appointment soon with a gastroenterologist and want to be sure I ask all necessary questions. I’ve read that I should request 6 biopsies if/when I go for a scope. If anything else I should make sure to ask for, please feel free to advise!

I have a positive genetic screen, and my blood work results are as follows:

tissue transglutaminase IgA - 161

tissue transglutaminase IgG - 46

deaminated gliadin peptide igA- 135

deaminated gliadin peptide igG- 80

 

the reference ranges for all of the above are as follows:

Negative: <20

weak positive: 20-30

moderate to strong positive: >30

 

Am I correct to expect I’m basically guaranteed to be diagnosed based on how high my blood work results are?? 

Again- so glad to have found this community! About to go read through plenty of previous posts to learn as much as I can from your experiences and expertise!

thank you!

 

[kareng]

  On 10/10/2019 at 12:38 AM, Justaprairiegirl said:

Hi everyone,

I’m so glad to have found this community! My journey to diagnosis has been many years coming (as I’m sure it was for many of you), and I’m so excited to (hopefully) soon know the cause of my health issues.

I have an appointment soon with a gastroenterologist and want to be sure I ask all necessary questions. I’ve read that I should request 6 biopsies if/when I go for a scope. If anything else I should make sure to ask for, please feel free to advise!

I have a positive genetic screen, and my blood work results are as follows:

tissue transglutaminase IgA - 161

tissue transglutaminase IgG - 46

deaminated gliadin peptide igA- 135

deaminated gliadin peptide igG- 80

 

the reference ranges for all of the above are as follows:

Negative: <20

weak positive: 20-30

moderate to strong positive: >30

 

Am I correct to expect I’m basically guaranteed to be diagnosed based on how high my blood work results are?? 

Again- so glad to have found this community! About to go read through plenty of previous posts to learn as much as I can from your experiences and expertise!

thank you!

 

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Those blood tests are pretty positive!  Welcome to the club!

[cyclinglady]

Welcome!  

It would be nice to have a benchmark to know the extent of your small intestinal damage.  The GI can biopsy your stomach too to check for concurrent illness like H.Pylori, etc.  Once the endoscopy and biopsies have been completed, you can go gluten free.  

Research all that you can to learn about the diet.  Ask any questions.  Soon, you will be feeling much better!  

[Justaprairiegirl]

Thank you to both of you! I really appreciate it. Tomorrow is my appointment and I am anxiously awaiting next steps.  If/once my diagnosis is confirmed, I also plan to have my 6 year old tested as she has sole suspect symptoms as well.

thanks for the support!!

[Justaprairiegirl]

  On 10/10/2019 at 4:06 AM, cyclinglady said:

Welcome!  

It would be nice to have a benchmark to know the extent of your small intestinal damage.  The GI can biopsy your stomach too to check for concurrent illness like H.Pylori, etc.  Once the endoscopy and biopsies have been completed, you can go gluten free.  

Research all that you can to learn about the diet.  Ask any questions.  Soon, you will be feeling much better!  

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Thanks again for your help! I had my appt yesterday and the Dr said without a doubt, I have celiac disease. He said he is comfortable diagnosing without a scope but would do one for me if I wanted. I would like to know the extent of the damage- like you mentioned- unfortunately I’m not booked for the scope until Dec. 30! 

I know compared with the (likely) 25 years  I’ve been living with celiac, these few months aren’t that long of a wait, but I am so eager to start on my road to recovery that the end of December feels ages away.

I will confirm that I’m on the cancellation list (and will jokingly ask the receptionists if they take bribes! Haha), but it’s just hard knowing that I’ll be injuring myself even further while I wait.  

Oh well - guess I’ll kick off 2020 gluten-free!?

[cyclinglady]

I went seven weeks between my endoscopy and my blood test results.  My own work schedule was the issue.  Since my hubby  had been gluten free for 12 years, I knew exactly what gluten-free really meant.  At the time, I did not know that a having an only DGP IgA result was odd.  My GI took it as a positive and to move forward.  So, I took the time to bid a fond farewell to my favorite foods.  I literally consumed a loaf of sourdough a day.  I bought tons of food, had a sample and gave it away to my neighbors.  I stopped at my favorite restaurants sometimes just getting a dessert to go.  By the time I had my endoscopy, I was ready to give up gluten for life!  No regrets.  

A benchmark of damage really helped me when I had a repeat endoscopy.  Not everyone can get an endoscopy, so I consider myself fortunate.  

But that is just me.  You need to work out what is best for you!  

Take care!  

[GFinDC]

You don't need to eat a lot of gluten for the testing.  Just a small amount each day.  Your doctor can give you advice about it.   Some people may find it easier to eat their daily gluten dose before going to bed so they can sleep through some of the initial symptoms.  Others may find it better to eat it in the morning etc.  What works best for each person is an individual thing.

 

[Ranchers Wife]

I would probably wait for the biopsy, and have your symptomatic six year old tested immediately.

If you have other children, test them right away also, symptoms or not, as is currently the standard for first degree blood relatives of a person with Celiac disease. 

I would very much recommend a gluten free household. If your six year old has Celiac as well, then most definitely a gluten free household will be healing and helpful. 

A six year old is going to have difficulties understanding how clean your own diet must be, and handling gluten ingredients in the house in order to keep your food necessarily uncontaminated. For example, you can't make a peanut butter and jelly sandwich, spread peanut butter on the wheat bread, and then dip the knife in the strawberry jam ... because now your strawberry jam is gluten contaminated. Is a six year old going to be able to keep your strawberry jam separate from the household strawberry jam? "Usually" isn't going to work.

Other non Celiac family members can eat gluten outside the home. 

It's just pretty difficult to remain vigilant and totally clean and gluten free in a gluten eating household. Add kids to that equation and it becomes even more difficult.

[Justaprairiegirl]

  On 10/13/2019 at 12:34 PM, GFinDC said:

You don't need to eat a lot of gluten for the testing.  Just a small amount each day.  Your doctor can give you advice about it.   Some people may find it easier to eat their daily gluten dose before going to bed so they can sleep through some of the initial symptoms.  Others may find it better to eat it in the morning etc.  What works best for each person is an individual thing.

 

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Thanks so much!

[Justaprairiegirl]

  On 10/14/2019 at 5:31 PM, Ranchers Wife said:

I would probably wait for the biopsy, and have your symptomatic six year old tested immediately.

If you have other children, test them right away also, symptoms or not, as is currently the standard for first degree blood relatives of a person with Celiac disease. 

I would very much recommend a gluten free household. If your six year old has Celiac as well, then most definitely a gluten free household will be healing and helpful. 

A six year old is going to have difficulties understanding how clean your own diet must be, and handling gluten ingredients in the house in order to keep your food necessarily uncontaminated. For example, you can't make a peanut butter and jelly sandwich, spread peanut butter on the wheat bread, and then dip the knife in the strawberry jam ... because now your strawberry jam is gluten contaminated. Is a six year old going to be able to keep your strawberry jam separate from the household strawberry jam? "Usually" isn't going to work.

Other non Celiac family members can eat gluten outside the home. 

It's just pretty difficult to remain vigilant and totally clean and gluten free in a gluten eating household. Add kids to that equation and it becomes even more difficult.

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Thanks! I appreciate your perspective. I only have one child, and will be getting a requisition to have her tested this week.

It's just my partner, myself, and my daughter in our household. So once we know my daughter's results, we will make a plan for the home!

Thanks again for your help.