Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New Here
0

20 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!  

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

 

Check out the Newbie 101 thread if you already haven't (http://www.celiac.com/gluten-free/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.  ( http://www.cureceliacdisease.org/archives/faq/do-some-with-celiac-disease-also-have-lactose-intolerance )  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: http://www.celiaccentral.org/ask-the-dietitian/silent-celiac-disease-and-certified-gluten-free-oats/  You can add them back in once symptoms start to really resolve, at least three months wait.

 

The http://www.cureceliacdisease.org/ 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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!!! :)

0

Share this post


Link to post
Share on other sites

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!!! 

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

....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...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,547
  • Topics

  • Posts

    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined