Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here

BeckyS.

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,919
    • Most Online (within 30 mins)
      7,748
    SB Willow
    Newest Member
    SB Willow
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.