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BeckyS.

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BeckyS. Newbie
BeckyS.
Posted

Hi everyone! My name is Becky and we are from Alabama. I just discovered this site, and I believe its a God send. I spend countless amounts of time just browsing about this new adventure in going gluten-free. I have a 10 year daughter that tested positive 2 months ago with high numbers according to the doctor. Her numbers were TTG IgA >100, Gliadin IGA 148.8, Gliadin IGG 112, IGA antibody- positive titer 1:160. She had a biopsy this past Monday and Dr. saw significant damage and we are still waiting biopsy results but pretty much know what it will say. I can't help but feel overwhelmed, sad, and confused. I figured this was a normal reaction. I hope to find friends here, as I've never been a part of a forum before but I feel so lost and alone in what to do. I just wanted to introduce myself, and say how excited I am to be here.

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LauraTX Rising Star
LauraTX
Posted

Welcome, Becky! :)  Those numbers definitely are very high, only a matter of formality to wait for an official Celiac diagnosis now.  There is a ton of good info here on just about everything.  Also a lot of people with kiddos who can give you advice on their similar situations.  This forum has been around for a long time, so if you use the search function to look up a topic or product, take note of the posting date, because especially product information can change over the years.  

 

Feel free to post about any questions!  

BeckyS. Newbie
BeckyS.
Posted
  • Author

Thanks! Any clue what the titer numbers mean? I googled but sometimes I don't get the lingo and get confused.

LauraTX Rising Star
LauraTX
Posted

After everything is in and the diagnosis is finalized, it is a good idea to get copies of all the labwork so your daughter can have them for future reference.  Some of the labs have different ranges of normals, but usually for the TTG IGA, over 4-10 is high, and from talking to people on here, their high numbers many times fall in the 12-30ish range.  (that is purely anecdotal, not scientific.)  Over 100 is very high, and usually for people whose numbers are that high, damage is really bad, and it takes a long while for the gut to heal and numbers to go down.  Part of the follow up care after diagnosis is checking on vitamin levels and some doctors check the TTG IGA periodically as well to make sure the patient isn't getting gluten into their system too much.  Since your daughters damage in the small intestine was so bad that the doctor could tell before getting the biopsy back, it will probably take her a while to heal.  Since her TTG numbers were so high, they will take a long time to go down, as well.  Here is a good explanation of all the blood tests: Open Original Shared Link

 

Check out the Newbie 101 thread if you already haven't (https://www.celiac.com/forums/topic/91878-newbie-info-101/)

Some things to keep in mind when a diagnosis is first made are that many Celiacs are also lactose intolerant due to their villi in the small intestine being blunted, and it can clear up once they are healed.  So pay close attention to how she feels after consuming dairy and don't hesitate to go dairy free for a while.  ( Open Original Shared Link )  Since her damage was really bad, that while can be a year out, but healing is different for each person.  

 

Also, it is a good idea to avoid gluten-free oats for a while until the celiac is under control, here is a good article on that: Open Original Shared Link  You can add them back in once symptoms start to really resolve, at least three months wait.

 

The Open Original Shared Link website is the University of Chicago Celiac Disease Center, and they have a great website with tons of FAQs and resources as well.

 

Once the morning hits some of our more seasoned members will be on and certainly have more to add.  :)  But the places I linked are great to start.

bluewhitesky Rookie
bluewhitesky
Posted

Hi Becky!

 

I'm relatively new here as well and we've just got a (semi-)diagnosis for my son this week. We have an appointment on Wednesday and I'm expecting to make the change in our house to 100% gluten free directly after that.

 

I agree, this site is a God-send. I spent hours and hours reading over the past few months.

 

I also feel overwhelmed and sad, and I've been half expecting this since before my kids were born just based on my reaction to gluten and family history. So I'd say you're right, your feelings are totally normal! 

 

Welcome!! I'll probably start posting more too now that I know what we're dealing with.

BeckyS. Newbie
BeckyS.
Posted
  • Author

Thanks so much for the replies! The doctor said many times that her levels were extremely high. During her biopsy she had redness and even was pale in some areas, also nodules. I almost feel like she's sing picked on,as she's had one thing after another sine she was born. The other two have been so healthy and never hardly had an ear infection.

Soozy Newbie
Soozy
Posted

Hi Becky. I am 44 years old. I just joined this forum today and am looking for lots of info too as I was diagnosed with Celiac Disease just last Friday. I was somewhat overwhelmed with my results and didn't get all of my levels written down, but I know they were all very high and I have tested positive for all, sadly. My one level was at 60 where as the normal range for antibodies is 1.0 to 1.7. I don't even know what it means but I am supposed to have my levels tested again and have a biopsy done to see how bad the damage is. From that very afternoon, I haven't ingested any gluten!! I have also chosen to go 100% dairy free as I do have severe issues with dairy as it is. It's so very confusing and my doctor told me to only join forums and websites for Celiacs, not those whom "choose" to be Gluten free as to not be confused with "lifestyle" over "life". We will fight this together, girl. All the best, from Ontario, Canada.

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kareng Grand Master
kareng
Posted

Hi Becky. I am 44 years old. I just joined this forum today and am looking for lots of info too as I was diagnosed with Celiac Disease just last Friday. I was somewhat overwhelmed with my results and didn't get all of my levels written down, but I know they were all very high and I have tested positive for all, sadly. My one level was at 60 where as the normal range for antibodies is 1.0 to 1.7. I don't even know what it means but I am supposed to have my levels tested again and have a biopsy done to see how bad the damage is. From that very afternoon, I haven't ingested any gluten!! I have also chosen to go 100% dairy free as I do have severe issues with dairy as it is. It's so very confusing and my doctor told me to only join forums and websites for Celiacs, not those whom "choose" to be Gluten free as to not be confused with "lifestyle" over "life". We will fight this together, girl. All the best, from Ontario, Canada.

Welcome.

Just an FYI, if you want to have the endoscopy, you are supposed to continue to eat gluten until all testing is done.

Once you are healed, you may be able to eat dairy again! That's the good news.

Soozy Newbie
Soozy
Posted

I don't know if they will. I can suggest one I guess but perhaps they're satisfied with the blood tests. I tested positive for all three blood tests. He will give me the results from the lab next week. I was to eat gluten for a week and be tested again, the results were all positive with high numbers, whatever that means. There were low to moderate and moderate to high. I was at the high level of moderate to high. I will learn it all, and what it all means, but it'll take some time. Thanks!!! :)

StephanieL Enthusiast
StephanieL
Posted

Hi Becky!  I am a Mom to a 7.5 yo with Celiac and several other things.  This is a great place to get some education and tip and help transitioning to a new lifestyle that will change her life!!! 

bluewhitesky Rookie
bluewhitesky
Posted

Soozy, I'm from Ontario too. Ottawa actually :)

RMJ Mentor
RMJ
Posted

Thanks! Any clue what the titer numbers mean? I googled but sometimes I don't get the lingo and get confused.

The titer result is probably from the endomysial antibody test. The titer of 1:160 means that when your daughter's serum was diluted one part her serum and 159 parts diluent, it was still positive. That is a high positive for that test.

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  I'm sorry to hear your daughter has had such a rough time, but hopefully she'll be feeling well before the summer ends.

 

You might want to check her nutrient levels too. Celiacs are often low in Ca, Mg, Fe, K, A, ferritin, zinc, Cu, B12, and .... I think I'm forgetting something.  Hypothyroidism and diabetes are more common among celiacs so you'll want to keep an eye out for that. The best thyroid tests are TSH, Free T3 and free T4, and TPO Ab.

 

 

The titer result is probably from the endomysial antibody test. The titer of 1:160 means that when your daughter's serum was diluted one part her serum and 159 parts diluent, it was still positive. That is a high positive for that test.

Yep, that is high.  The dilution is double every time the test is run. Usually a negative is 1:10 or lower. Positives then go up like 1:20, 1:40, 1:80, 1:160, etc.  They stopped at 1:160 because the EMA IgA was not detected at 1:320... I don't think I've ever seen that actually.

africanqueen99 Contributor
africanqueen99
Posted

Hi Becky! I hit the genetic lottery with 2 out of 3 kids with celiac. And I started out sad, scared, overwhelmed and so obsessively occupied with food. But it gets easier with time. I promise!

Ask anything you want - seriously don't reinvent the wheel. The parents on this forum rock and are insanely helpful!

  • 2 weeks later...
BeckyS. Newbie
BeckyS.
Posted
  • Author

Well I'm back with an update! The biopsy came back with the result we already knew :( The doctor has up set up to see a nutritionist in a few weeks. I'm so happy cause then I may not feel so overwhelmed. Did any of you at first spend hours in a grocery store trying to figure out what is ok and what's not? I'm spending wayyyy more time than I care too ( and money too)!

PS- What syrup is gluten free? ( she hates maple syrup)

africanqueen99 Contributor
africanqueen99
Posted

Yep, hours in a Whole Foods and my cart was still practically empty! It sucked. If you're seeing a nutritionist then you have time to transition. Start with meals you already make gluten-free (or a simply change will make them safe) - ie, steak and baked potatoes and you just need a new seasoning. Bacon and eggs and you just need a new brand of bacon, etc. you will work your way up to the big stuff, but do NOT stress, you'll get there.

nvsmom Community Regular
nvsmom
Posted

Well I'm back with an update! The biopsy came back with the result we already knew :( The doctor has up set up to see a nutritionist in a few weeks. I'm so happy cause then I may not feel so overwhelmed. Did any of you at first spend hours in a grocery store trying to figure out what is ok and what's not? I'm spending wayyyy more time than I care too ( and money too)!

PS- What syrup is gluten free? ( she hates maple syrup)

 

We use Summerland Sweets Blueberry Syrup, but it may not be down in the States. I would imagine that most syrups are gluten-free, but we tend to use berry syrups or maple.

 

The grocery store is tough at first. You'll find your brands eventually - you just need to hang in there for the first few months.

 

Don't forget to get the rest of the family tested, and retested every 2 years, because celiac disease is a genetically linked disease and someone else may have it. Be careful about testing if you are in the military, I think Canada and the States do not accept people with celiac disease, but I'm not sure what they do with those who are diagnosed while already in the service.

 

Best wishes.

BeckyS. Newbie
BeckyS.
Posted
  • Author

Yup that's next on the list is to get us all tested. I have two other girls ages 7, and 4.

Georgia-guy Enthusiast
Georgia-guy
Posted

As for hours in the grocery store, right after I god diagnosed I went shopping at Kroger. Normally spent 30-45 minute for 2 weeks worth of groceries.....that day I spent almost 2 hours and had just over a weeks worth when I decided to call it quits for that trip. The next weekend I went to get another weeks worth and felt like a complete idiot.....they have "gluten free" on the shelf tags for majority of their gluten free products. Moral of my story, I recommend Kroger (or one of their sister stores I'm sure would have the same type of shelf tags) or just checking with an employee at customer service to see if there's anything like that in your grocery store.

nvsmom Community Regular
nvsmom
Posted

....or just checking with an employee at customer service to see if there's anything like that in your grocery store.

That is such good and simple advice! I wish I had thought of it!!  I need a head smacking smiley here...

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