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Johnny55400

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Johnny55400 Apprentice
Johnny55400
Posted

My doctor wrote to me that my recent endoscopy showed some changes of my small intestine which may indicate that I have celiac disease. Some blood work confirmed this. I am not sure what this blood work tested. but "something" was high. Yet, I am skeptical. I do not have any symptoms or disorders listed by many sites. This past three months I took regularly some Naproxen for a knew problem. I was wondering if that could have caused the changes of my small intestine. What do you think?

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Johnny55400 said:

My doctor wrote to me that my recent endoscopy showed some changes of my small intestine which may indicate that I have celiac disease. Some blood work confirmed this. I am not sure what this blood work tested. but "something" was high. Yet, I am skeptical. I do not have any symptoms or disorders listed by many sites. This past three months I took regularly some Naproxen for a knew problem. I was wondering if that could have caused the changes of my small intestine. What do you think?

Welcome!

The first thing you can do is to get your lab results.  With what you presented, you could have celiac disease or the drug may have damaged your small intestine or both.  Who knows?  

Keep in mind that some celiac are asymptomatic and that symptoms can overlap with other illnesses.  I had no GI issues when I was diagnosed.  

Johnny55400 Apprentice
Johnny55400
Posted
  • Author

Thanks! I got the lab report, which mentions that I have HLA DQ8 and a tissue transglutaminase level of 3. Quite often, I have heartburn that I can now connect to a potential celiac disease. If you go gluten free and don't have to many serious symptoms can you occasionally eat gluten if no choice? 

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Johnny55400 said:

Thanks! I got the lab report, which mentions that I have HLA DQ8 and a tissue transglutaminase level of 3. Quite often, I have heartburn that I can now connect to a potential celiac disease. If you go gluten free and don't have to many serious symptoms can you occasionally eat gluten if no choice? 

What was the range for the TTG?  It might not be positive.  The gene test is positive, but then 30% of the population has the genes tha that could develop into celiac disease.  It is used usually to exclude celiac disease.  

Johnny55400 Apprentice
Johnny55400
Posted
  • Author
What does TTG mean? Here is what I received: So the genetic test HLD DQ8 shows that you are at risk for celiac (you either have to be positive for HLA DQ2 or 8 to have celiac). 97% of people with celiac have either HLA DQ 2 or DQ8. You had DQ8.
 
The confirmation is the tissue transglutaminase level of 31, normal is less than 4 and the positive endomysial antibody test. These are antibodies against the cells in your small bowel, and indicate that the gluten has likely triggered a response that causes inflammation in the small intestine.
 
Thanks a lot.
cyclinglady Grand Master
cyclinglady
Posted

Ah!  Your TTG (Anti-Transglutaminase) was a 31 and not a 3.  That is positive,  along with your EMA, gene test, and biopsy findings.   Nothing to be skeptical about, but denial seems to be running strong.  I get that!  I went in for a routine colonoscopy (am over 50) when my GI suggested testing for celiac disease.  I was shocked.  But lab tests?  Hard to deny those.  

I am sorry that you probably have celiac disease.  Why probably?  I am not a doctor, but if you want a second non-medical opinion from the internet, then you have it!  ?

We are glad you are here.  Read through our Newbie 101 thread located at the top of the “Coping” section of the forum.  Ask any questions.  

Take time to grieve, but know that you will start to feel better.  I did not realize that little symptoms that I attributed to aging, were  actually from celiac disease.  I can tell you that on a gluten free diet, my small intestine has completely healed (verified by repeat biopsy).  So, you CAN get well!  

 

Johnny55400 Apprentice
Johnny55400
Posted
  • Author

Thank you very much cycling lady for your support and kind words! Yes it was 31 not 3! I finally received the blood report. It also says: endomysal antibody sir (Riga); positive

Endomysal antibody titer: 1:20 H 

Do you know what it means?

I am slowly changing my habit... I had some heart burn from time to time although I eat quite healthy and now I guess I can make a connection to celiac disease. it is the only symptom that I have so far. First day today without gluten and I did not have too much pain compared to these past two days... Maybe it is a good sign! Can you still eat some gluten on rare occasion if you do not have too many symptoms or should I adhere 100% (if such a things exists) I can to this gluten free diet? I willl read the Newbie 101 as soon as I have a chance. Once again thank you for sharing your experience! 

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tessa25 Rising Star
tessa25
Posted
1 hour ago, Johnny55400 said:

Can you still eat some gluten on rare occasion if you do not have too many symptoms or should I adhere 100% (if such a things exists) I can to this gluten free diet?

You need to be 100% even if you don't feel anything.

If you're currently on a meat, potato, and veggies diet then relax because this is gonna be easy. If not you might want to switch to a meat, veggies, and potatoes diet initially.

 

Here's my list of gluten free equivalents to help make the switch easier:

Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread:
  - Canyon bakehouse without question is the most realistic tasting bread. They have white, fake rye, multigrain and bagels (the bagels are fantastic).
  - Schar baguettes are decent.
  - Katz makes an English muffin that, after toasted, reminds me of a real one provided it has stuff on it like butter. I think that's the brand.
  - Etalia has a good boule if you prefer artisan bread. (Colorado)

Pizza crust:
    - Schar makes a good thick and chewy crust.
    - Udis makes a good thin and crispy crust.
    - Etalia makes a great New York crust. (Colorado)

Pasta:
    - Barilla makes the best pasta. Tastes like normal pasta. Spaghetti cooks the best.
    
Flour:
    - Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    - Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops.

Cookies:
    - Goodie Girl mint slims - fantastic girl scout mint cookie equivalent
    - Kinnikinnik makes a decent Oreo equivalent.
    - Kinnikinnik makes a good nilla wafer
    - Mi Del makes a great ginger snap.

Cake:
    - Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time
            exactly right. It is a very small window of time. Too long and it's too dry.

Frozen meals:
    - Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Johnny55400 Apprentice
Johnny55400
Posted
  • Author

Thank you for the infos! Do you order on line? Are the products frozen? Is it ok to eat couscous and white rice? 

 

RMJ Mentor
RMJ
Posted

Couscous is made from wheat and should not be eaten by those with celiac disease.  White rice is fine.

tessa25 Rising Star
tessa25
Posted
2 hours ago, Johnny55400 said:

Thank you for the infos! Do you order on line? Are the products frozen?

Katz is frozen. Everything else usually isn't. Gluten free breads seem to dry out on me if I leave them out or in the fridge so I freeze them if I'm not using them in a day. Some of that stuff is at the major grocery stores, but the stuff I get at the natural grocery stores I stock up on so I don't have to go very often. glutenfreemall.com has a very large selection of stuff. If I order online I stock up as well.

Johnny55400 Apprentice
Johnny55400
Posted
  • Author

Thanks.

Someone knows the meaning of : 

Endomysal antibody titer: 1:20 H 

Is the gluten free mall a good resource?

Apparently not ok to eat soy?

Ennis-TX Grand Master
Ennis-TX
Posted
38 minutes ago, Johnny55400 said:

Thanks.

Someone knows the meaning of : 

Endomysal antibody titer: 1:20 H 

Is the gluten free mall a good resource?

Apparently not ok to eat soy?

The mall thing is a place to buy some gluten free foods. I personally source elsewhere but they have a good selection.
Soy can cause gastric distress in some. I can by example eat "soy lectin" but if something contains anything else related to soy I will get really bad bloat, gas, and explosive D. ....I still have nightmares about the times I tried tofu, soy milk, and even once tried pure soy protein.  There is also where it can effect hormones for some people, it seems to be more related to genetics on that note but it can increase estrogen in some people.

  • 1 month later...
Johnny55400 Apprentice
Johnny55400
Posted
  • Author
On 2/6/2018 at 6:24 PM, Johnny55400 said:

Thank you very much cycling lady for your support and kind words! Yes it was 31 not 3! I finally received the blood report. It also says: endomysal antibody sir (Riga); positive

Endomysal antibody titer: 1:20 H 

Do you know what it means?

I am slowly changing my habit... I had some heart burn from time to time although I eat quite healthy and now I guess I can make a connection to celiac disease. it is the only symptom that I have so far. First day today without gluten and I did not have too much pain compared to these past two days... Maybe it is a good sign! Can you still eat some gluten on rare occasion if you do not have too many symptoms or should I adhere 100% (if such a things exists) I can to this gluten free diet? I willl read the Newbie 101 as soon as I have a chance. Once again thank you for sharing your experience! 

After 2 months of gluten free diet my TTG (Anti-Transglutaminase)  is now a "6". My  endomysal antibody titer is : 140 now. My doctor told me that it was not a problem. She know wants me to be 8 weeks on regular diet with gluten. DShe wants to do another endoscopy and blood test. Not sure exactly what she wants to test...

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