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Newbie, Guess I Have Celiac!

ForAandA

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ForAandA Newbie
ForAandA
Posted

Hello, everyone. For years I have been ill. Symptoms and problems have become worse. Finally, my new doctor did what she calls a complete celiac panel. I fasted the night before the blood work (not on purpose, just feeling ill), and here are the results...

Transglutaminase IgA Autolabs >300.0H (Yes, that is greater than 300)

Transglutaminase IgG Autolabs 24.2H

Endomysial IgA Autolabs POS 1:10

Immunoglobulin A 175 (in normal range)

Now, I have NO IDEA what all of this means! The doctor called me and said pretty matter of factly that I have Celiac disease. I had a consultation with my GI, he said the same thing. Had my endoscopy and small intentine biopsy last Friday. Now waiting on those results.

Guess its a silly question. Do I really have Celiac disease??

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1desperateladysaved Proficient
1desperateladysaved
Posted

First, welcome and glad you could share with me. I am glad you have a chance to ask. Many times the doctors are clueless, but yours give you helpful information. I guess you read over signs and symptoms and will discover you have some. Otherwise when you get your diet in order you will probably realize problems when you get gluten by accident. It took 3 or 4 days for me. At that point I began to react to gluten flours being used in my kitchen.

It can be a long ride with many bumps. Right here is a good place to learn how to deal with it. I don't know about your test scores really, but someone will. I just base my conclusion that 2 doctors said you did.

DT

beachbirdie Contributor
beachbirdie
Posted

Hello, everyone. For years I have been ill. Symptoms and problems have become worse. Finally, my new doctor did what she calls a complete celiac panel. I fasted the night before the blood work (not on purpose, just feeling ill), and here are the results...

Transglutaminase IgA Autolabs >300.0H (Yes, that is greater than 300)

Transglutaminase IgG Autolabs 24.2H

Endomysial IgA Autolabs POS 1:10

Immunoglobulin A 175 (in normal range)

Now, I have NO IDEA what all of this means! The doctor called me and said pretty matter of factly that I have Celiac disease. I had a consultation with my GI, he said the same thing. Had my endoscopy and small intentine biopsy last Friday. Now waiting on those results.

Guess its a silly question. Do I really have Celiac disease??

Yep, you are part of the celiac clan.

Read, read, and read some more around here. There is lots of wonderful, helpful information that will shorten your learning curve.

Ask lots of questions. Plenty of patient, knowledgeable, experienced people here who will be glad to help you and encourage you.

Even if the biopsy comes back negative, your blood tests show you MUST go gluten free. Sometimes they don't do a thorough job of getting samples, or they miss the damage because it can be patchy.

Welcome to the forum!

GottaSki Mentor
GottaSki
Posted

Welcome!

Yes, you definitely have Celiac Disease. Your tTG IgA is very high and tTG IgG is high leaving no doubt regarding diagnosis - the endoscopy may give you information about the damage in your small intestine, but is not always clear as the intestine is quite long and the area tested is quite small. The good news is now you can start improving your health by changing your diet. Not sure if your doctors told you, you can begin eating gluten-free now that your testing is complete - no need to wait for your endo results.

The learning curve can be very tough, but not to worry as it does get much easier with time.

You have found a great place to come for support as well as answers to any questions you may have. Might want to start by reading the FAQs along with "Newbie 101" threads you can find here: https://www.celiac.com/forums/forum/5-celiac-disease-coping-with/

There are no silly questions, although there are most definitely Silly-yaks ;)

MitziG Enthusiast
MitziG
Posted

Yep. You got it. Even if your endoscopy comes back negative (they aren't all that reliable) with that kind of strong positive bloodwork on so many specific tests, you definitely have it. But...it is kind of a "good" disease to have. No drugs to take and the difference you will feel (with TIME) on the gluten free diet makes the inconvenience well worth it!

ForAandA Newbie
ForAandA
Posted
  • Author

Thank you all for the responses. I truly appreciate it! When my primary saw my numbers, she was pretty surprised. I was going to her for a bunch of issues. Some of the medical problems I have been having include migraines, fatigue, joint pain, stools which change from constipation to diarrhea, depression, anxiety, stomach pain, etc. My stomach is so swollen all the time. It looks almost like I am pregnant!

I saw several doctors, including a neuroligist for the migraines, went to the ER twice for the stomach pain, etc. It was finally this new doctor who said lets test for Celiac. Now that both my primary and my new GI are on the same page,I guess the diagnosis is clear.

I am scared! With a very full life (just like everyone else I'm sure) I really don't know where to begin. I am trying to read as much as I can. It is so overwhelming. And the cost of gluten free food really scares me. I have a follow up with the GI in a couple of weeks, and they said they would call me as soon as the endo results are in. Luckily, this GI is very well rated, and very well versed in Celiac.

I wonder how long it will take before I feel better?

GFinDC Veteran
GFinDC
Posted

Yep, another one of us gets diagnosed! Yay!. There are many, many more that are undiagnosed, and don't know why they are sick and getting sicker every day. The estimate is 90% or more of celiacs are undiagnosed in the USA. Many doctors don't think to test people for it.

Here are some getting started threads that may help. I only put in a few of the food and eating related threads, but you will see that we can eat a lot of different foods. And eat well.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

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ForAandA Newbie
ForAandA
Posted
  • Author

Yep, another one of us gets diagnosed! Yay!. There are many, many more that are undiagnosed, and don't know why they are sick and getting sicker every day. The estimate is 90% or more of celiacs are undiagnosed in the USA. Many doctors don't think to test people for it.

Here are some getting started threads that may help. I only put in afew ofhte food and eating related threads, but you will see that we can eat a lot of different foods. And eat well.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

Thank you all for the warm welcome. And thank you for the links! These are really going to help. I am sure that you all understand how overwhelming this can be.

beachbirdie Contributor
beachbirdie
Posted

Thank you all for the responses. I truly appreciate it! When my primary saw my numbers, she was pretty surprised. I was going to her for a bunch of issues. Some of the medical problems I have been having include migraines, fatigue, joint pain, stools which change from constipation to diarrhea, depression, anxiety, stomach pain, etc. My stomach is so swollen all the time. It looks almost like I am pregnant!

I saw several doctors, including a neuroligist for the migraines, went to the ER twice for the stomach pain, etc. It was finally this new doctor who said lets test for Celiac. Now that both my primary and my new GI are on the same page,I guess the diagnosis is clear.

I am scared! With a very full life (just like everyone else I'm sure) I really don't know where to begin. I am trying to read as much as I can. It is so overwhelming. And the cost of gluten free food really scares me. I have a follow up with the GI in a couple of weeks, and they said they would call me as soon as the endo results are in. Luckily, this GI is very well rated, and very well versed in Celiac.

I wonder how long it will take before I feel better?

Don't stress about the cost of gluten-free food. You do not need to go out and buy all the stuff that tries to replace your gluten-filled foods. We use almost NO commercial gluten-free breads, and use the pastas only occasionally. We also don't use commercial mixes for the most part, though we have some on hand for those emergencies where you can't think of what to make. You also don't need to go out and try to create a whole bunch of different flour mixes (if you are a baker) like you will find if you look at some of the gluten-free cookbooks. You can learn to bake very simply with just a few different flours.

In fact, it's probably a really good idea to get on a "whole food" diet. Just eat good lean meats, fresh fruits and vegetables, and if you need starch use rice and potato. You will need a little time to change old habits, and change your tastes, but in the end it's worth it!

Check out the food threads...there are some on dinners, lunches, breakfasts. Lots of good ideas out there!

You might want to get in and clean out your cupboards. Find all your glutenous stuff and either throw away, or give a way. Clean and inspect your utensils and kitchen equipment. You might have to start over with cutting boards if you use wooden ones, wooden spoons as well.

GottaSki Mentor
GottaSki
Posted

I wonder how long it will take before I feel better?

Although some Celiacs feel better within the first few weeks, many don't feel much better right away. Healing time depends on many factors. You will likely notice improvements with digestive issues first. It helped me a great deal to note/celebrate the small improvements as they occurred -- nail/hair improvements, healthier gums, less bloating, etc.

While no one can tell you how long it will be until you feel better, we can most definitely tell you that you will feel better.

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