My 3yr old's 690 IgA Result

[Kifaya]

My 3 yr old's IgA Result was 690!! This is very concerning as the lab result says 80 is high. Her IgG was also 118.

One week on a Gluten free diet and she is already feeling much better but I would love to know more. Is such a high result rare? Does this mean she has a 99% chance of having Celiac? Her Dr. said the only way to know is to have a biopsy but she is only 3!

Thanks

Sharlene

[GFinDC]

Hi,

If she is doing better on the gluten-free diet that's very good.  Exact antibody numbers are not super important, but that her gliaden antibody levels and symptoms decrease over time is important.

I'd say yes, it is very likely she has celiac based on her elevated antibody levels and symptom improvement on the  gluten-free diet.  Something to be aware of though is that recovery from celiac gut damage is not a smooth upward trend.  Symptoms seem to come and go somewhat randomly at first.  She may do better if she stops eating all dairy and oats for a few months too.

 

[trents]

Did they include tTG in the testing? But I think you have your answer if she is feeling better. Now you need to educate yourself on how and where gluten is found in the food system. You will be shocked at where it shows up, like canned tomato soup (and most other canned soups),  soy sauce, chips, vitamins and supplements. And then there is the issue of cross contamination from the growing, storage, transportation, processing and preparation of food which can inject gluten into food unintentionally. And even in your preparation at home there can be cross contamination from cookware and utensils.

Edited December 14, 2020 by trents

[RMJ]

It certainly sounds like celiac disease.

European guidelines for diagnosing celiac in children allow skipping the biopsy if the TTG IgA is 10X the upper limit of normal range.

https://www.espghan.org/dam/jcr:a82023ac-c7e6-45f9-8864-fe5ee5c37058/2020_New_Guidelines_for_the_Diagnosis_of_Paediatric_Coeliac_Disease._ESPGHAN_Advice_Guide.pdf

Unfortunately, many doctors in the US still like to go by the “gold standard” of biopsies before giving an official diagnosis.  If you don’t have an official diagnosis it can be harder to get people to believe that she has celiac, for example  it will be harder to get schools to cooperate with keeping gluten away from her.

If you do decide to proceed with the endoscopy procedure (biopsies) she needs to be eating gluten.  Otherwise the villi may heal and they may say she doesn’t have celiac.

[Scott Adams]

This article we just published is relevant, so I thought I'd share it:

 

[Kate333]

My heart goes out to you!  I know that sounds scary high, but the good news is: gluten anti-body blood test results sharply, dramatically decline once a STRICT gluten-free diet is started; small children heal MUCH FASTER than adults (as you are seeing with her quick response to the gluten-free diet); and you were lucky enough to discover her condition when she is so very young and can be spared years/decades of GI misery, endless doctor visits, and wondering what's wrong.  Also, her very young age makes it highly likely that she will be able to live a "normal" healthy, long life.  As we speak, doctors all over the world are working on developing vaccines/cure, some of which are even now in early stages of trials. I am so hopeful that they will be able to learn much from studying (and applying) the same high tech methods used in CV vaccine development to celiac disease vaccines.  

BTW, my TTG was over 200 when I was first diagnosed (and I was shocked, depressed).  But it dropped to normal after only 6 months on a gluten-free diet.  The most important thing now is to educate yourself about how to start a STRICT gluten-free diet for her and keep her on it (no exceptions); she cannot resume the old diet or eating ANY gluten once she feels better.  It would just cause a relapse and make her sick all over again.  Also, be sure and get yourself and all family members tested, even if you/they show no GI distress as celiac disease tends to run in families.  

Good luck to you/her on your healing journey!  

 

  

 

 

 

 

[Kifaya]

 I am amazed and comforted by the response to my post.

From what I understand TTG is the important one and if it is short for-

Tissue TransGlutaminase IgA

a normal level is 20 x 10 = 200. 

So 680 seems to be a pretty strong indication of Celiac.

This is start of a life long journey but my daughter won't be alone now we have found you ❤️

Thank you

[Kate333]

50 minutes ago, Kifaya said:

 I am amazed and comforted by the response to my post.

From what I understand TTG is the important one and if it is short for-

Tissue TransGlutaminase IgA

a normal level is 20 x 10 = 200. 

So 680 seems to be a pretty strong indication of Celiac.

This is start of a life long journey but my daughter won't be alone now we have found you ❤️

Thank you

Hi again, Kifaya.  So glad to hear our words are a comfort to you.  We have all been down this path, so you and your precious daughter are not alone. We are here for you!

Just a point of clarity:  a "normal" TTG reading is 15 or less (not 200).  Don't know if you live in the US or Europe, but hopefully, your daughter's high reading will spare her the hassle of getting scoped/biopsied (BTW, all done under anesthesia so she won't feel a thing).  As RMJ noted, many US GI docs insist on an endoscopy after the blood test to "confirm" what most probably already know: suspected celiac disease.  Not sure why the US lags behind on following the European model.  IMO it makes more sense to just skip all that, esp. for children who heal much more quickly than adults.  

And here's to hoping/praying that gluten-free journey will NOT be "lifelong"; I really do believe we will live to see a cure for celiac disease very, very soon and will be celebrating that not long after we celebrate an end to this terrible pandemic!!  If you Google the words "celiac disease vaccines" you will find many articles highlighting the current research efforts.

Here's wishing you and your family a safe, happy holiday and new year!🙂

[DJFL77I]

 

good lord 690? 

normal TTG is   0 - 3

Negative 0 - 3
Weak Positive 4 - 10
Positive - 10+

[DJFL77I]

Were you tested?    

[DJFL77I]

Were you tested?    You might have it too..

How can someone who has only had Celiac for 3 years have such high antibody levels

[RMJ]

The normal range for TTG IgA depends on the manufacturer of the test.  Some are 0 to 3, some 0 to 19...

The units are arbitrary, not a specific unit of measure such as mg/dL, which is often, but not always, how total IgA is expressed.

[DJFL77I]

really..

so that would mean my 13 (tTG) IgA is in range ?   

it says high on my report

[RMJ]

2 hours ago, DJFL77I said:

really..

so that would mean my 13 (tTG) IgA is in range ?   

it says high on my report

It depends on the range of your lab, which should be on the lab report. If it says high it is high.

[RMJ]

10 minutes ago, RMJ said:

It depends on the range of your lab, which should be on the lab report. If it says high it is high.

Also, it is NOT the case that the same amount of antibody is being called positive at one lab and negative at another. The units are arbitrary, not absolute, set by each lab, and can’t be compared.  A given amount of antibody might be measured as 4 lab A units and 20 lab B units.

[Ivana]

On 12/15/2020 at 9:57 AM, DJFL77I said:

 

good lord 690? 

normal TTG is   0 - 3

Negative 0 - 3
Weak Positive 4 - 10
Positive - 10+

No need for "good lord". People are scared as it is. What should I say then, I had over 900 (positive is above 10 according to the lab standards.) I will re take the test next month to see how I am doing. But here where I live, I met people who had like 2000 and dropped to 50 within 6 months. So I am hopeful....

[GFinDC]

12 hours ago, Ivana said:

No need for "good lord". People are scared as it is. What should I say then, I had over 900 (positive is above 10 according to the lab standards.) I will re take the test next month to see how I am doing. But here where I live, I met people who had like 2000 and dropped to 50 within 6 months. So I am hopeful....

Hi Ivana,

Hopefully your numbers will be lower.  Please do ask any questions you might have.  We are glad to help as we all have been through this ourselves.  You may recover faster if you stop all dairy and oats for a few months.  They can be problems from some of us.

[Ivana]

1 hour ago, GFinDC said:

Hi Ivana,

Hopefully your numbers will be lower.  Please do ask any questions you might have.  We are glad to help as we all have been through this ourselves.  You may recover faster if you stop all dairy and oats for a few months.  They can be problems from some of us.

Thank you. I don't want to hijack this thread. I posted here when I was first diagnosed 5 months ago and I found the forum really helpful. However, I have been suffering from extreme anxiety since (I think a combination of diagnosis, covid and other things) so I actually try to stay away from forums that remind me I am sick. I drop by occassionally though. I reacted to a negative comment beacause I think people need encouragement most of all. I hope I will have some good news to share in a month and give some hope to newly diagnosed. 

[Scott Adams]

@Ivana many others are also anxious, especially in countries with high covid-19 rates like the USA. It appears that we are in the "home stretch" with regard to the vaccine that is now being distributed, but in reality we're currently in the most dangerous period of covid. 

On the positive side of really high celiac blood test results, the latest research indicates that you probably don't need a biopsy to confirm the diagnosis. The new blood test standard mentioned in the article indicate that many more people will get diagnosed, as many people are not willing to do a biopsy, so they never get a definitive answer.

[Ivana]

49 minutes ago, Scott Adams said:

@Ivana many others are also anxious, especially in countries with high covid-19 rates like the USA. It appears that we are in the "home stretch" with regard to the vaccine that is now being distributed, but in reality we're currently in the most dangerous period of covid. 

On the positive side of really high celiac blood test results, the latest research indicates that you probably don't need a biopsy to confirm the diagnosis. The new blood test standard mentioned in the article indicate that many more people will get diagnosed, as many people are not willing to do a biopsy, so they never get a definitive answer.

Yes, in my country too it is worse than ever at the moment. It comforts me to know that it is maybe "normal" to feel like this right now, and that my state might improve when things are more normal again. (We even have limited movement between cities). 

Oh, I had the biopsy first (poking inside to see if there was a bacteria or something depleting my iron), which confirmed celiac. Hardly heard of it before! I did the blood test to know what my starting levels are, and needless to say it was another shock when I compared to other celiacs. I am curious about my next results, although I am not inclined to go around hospitals at the momet...

Thank you for your kind words!

[Kate333]

7 hours ago, Ivana said:

Thank you. I don't want to hijack this thread. I posted here when I was first diagnosed 5 months ago and I found the forum really helpful. However, I have been suffering from extreme anxiety since (I think a combination of diagnosis, covid and other things) so I actually try to stay away from forums that remind me I am sick. I drop by occassionally though. I reacted to a negative comment beacause I think people need encouragement most of all. I hope I will have some good news to share in a month and give some hope to newly diagnosed. 

Hi Ivana.  Well said!!  Fortunately, most commenters on this board are very kind and helpful, but I have noticed a few exceptions.  That earlier comment was ignorant and totally out of bounds, even cruel to say to a mother already worried about her young daughter.  It is so important to remember what it is like to first get a diagnosis and to try to be helpful, supportive to each other as we embark on an already stressful journey in life.  Like most of life, the most important thing isn't where we begin but where we end up.   That applies to blood test results.  Mine were in excess of 200 and dropped to near zero in 6 months but it's not unusual at all to take longer. If you stick to a strictly gluten-free diet, I am sure your future blood test numbers will quickly start to drop.  My GI doc said it's more important to look at the overall "big picture" trend as you heal rather than obsess about specific numbers or comparing your healing experience to others'.  And as long as your numbers are progressively trending downward, you should celebrate that success!  It would be so tempting, easy to obsess about, or regret, the many years I was unknowingly sick from gluten exposure.  But, instead, I choose to focus on gratitude for a definitive diagnosis, finally understanding why I was sick for so many years, living in an age of ongoing celiac disease vaccine research, and taking the opportunity to focus on healing and recovery.  

I also see great wisdom in your advice to limit the time spent reading/thinking about illness by surfing Dr. Google, chat rooms and/or watching TV news.  Also important to remember that people on any chat boards, however well-intended, are merely expressing anecdotal personal opinions, not expert medical advice, so important to take them in that context and always consult with doctors. 

IMO stress reduction/avoidance is KEY to recovery because excess worry/anxiety, like G intolerance, can often trigger depression, inflammation, fatigue, and indigestion.  Like you, I am a relative "newbie" still trying to come to terms with this diagnosis and all the nuances required of gluten-free living.  Also, like you, I initially spent far too much time searching/reading the internet, thinking that bombarding myself with a ton of info. and others' stories (including symptom details) would help allay my worries.  But I soon realized it did exactly the opposite and made me feel worse.  So I unplugged, cut back my visits to chat rooms and noticed an improvement in mood.  

Here's wishing you/your family quick healing, a safe, happy holiday season and new year.☺️

  

 

[Scott Adams]

I just want to (defensively!) add that our board is a great place to gather knowledge, we also summarize all of the latest research and other general interest info into articles, and after one gains more knowledge helping others is a great way to: 1) Use your new knowledge; and 2) Help you feel better during this covid times. After all, it's hard to do the usual things you might normally do to contribute and help others. I guess that's why I've been doing this for 25 years now!

[GFinDC]

8 hours ago, Ivana said:

Thank you. I don't want to hijack this thread. I posted here when I was first diagnosed 5 months ago and I found the forum really helpful. However, I have been suffering from extreme anxiety since (I think a combination of diagnosis, covid and other things) so I actually try to stay away from forums that remind me I am sick. I drop by occasionally though. I reacted to a negative comment because I think people need encouragement most of all. I hope I will have some good news to share in a month and give some hope to newly diagnosed. 

Hi Ivana,

Some vitamin deficiencies can cause mental affects.  Our brains are organic and need certain nutrients to function well.  Some of the common ones to watch out for are all the B vitamins and Vitamin D.  B vitamins like B-12 are important for nerve function.  Our brains are made of lots of fat and lots of nerves.  So we can get a double problem by being low on B vitamins and also not being able to properly absorb fats.

You may find your anxiety fades after being gluten-free longer (healing) and especially once any deficient vitamin levels are restored.
 

 

Edited December 17, 2020 by GFinDC

[Kifaya]

Sorry I have not replied for a couple days! I have been running around seeing Drs and arranging tests for myself and family etc.

I have attached my daughter's results to answer people's questions. We are in Australia and it's only been a week so we don't yet know if anyone else in the family has Celiac or Gluten issues. 

Bit about my daughter: 

Born at 27 weeks, She is very small for her age (12 kg at 3 years and 3 months), has always had trouble putting on weight; has some delays particularly with speech, very low Iron and has been fighting constipation for most of 2020.

She had a tendency to get irritable and arch her back at bed time when she first went on solids but the doctors said this was because she was preterm! I am surprised it has taken this long to think of testing her for Celiac now that I have been reading about it! I can only surmise that being breastfed till almost 3 helped hide her symptoms. She has gotten much worse since I stopped. Finally she spent 2 weeks up most of the night with stomach pains and we had all the old tests done again. Plus an X-ray. Plus Celiac FINALLY and here we are...

I have been pouring over the forums and have found a lot of useful info. I've chucked out the garlic powder and am going to whole foods for all the family wherever possible. Buying a separate colander and pot for gluten free pasta. No more Sara Lee Ice-cream or Taco spice kits. Looking for somewhere we can buy gluten-free soya sauce fishes with the blue lids for when we go out atm :-) Will cut out the diary and Oats after Christmas if needed but at the moment I'm keeping them as she has already started to put on weight. Over 1/2 a kg in the week since we cut out Gluten which is Incredible!  She was down to 11.5 kg and now she is back to 12.2kg.

Hope that wasn't tmi LOL Thanks all.

 

[Kifaya]

On 12/15/2020 at 3:52 PM, Kate333 said:

Just a point of clarity:  a "normal" TTG reading is 15 or less (not 200). 

Sorry I wasn't clear here. RMJ said that European guidelines for diagnosing celiac in children allow skipping the biopsy if the TTG IgA is 10X the upper limit of normal range.

My lab report gave 20 as a "normal" reading. So therefore anything over 200 should be enough to diagnose celiac without the biopsy. That is what I was trying to say