• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
tiffanyk

Questions About Blood And Endoscope Testing On My 4-Year-Old

Rate this topic

Recommended Posts

My almost 4 year old has chronic constipation since birth so I finally got our pediatrician to try to figure out what's wrong. She had some blood work come back in January with a positive ttg (77.8). The rest of the labs were normal. She had labs done again in May with another positive ttg (50). We finally got an appointment with a pediatric GI, who was horrible, last Tuesday. She just had a endoscope biopsy on Friday. The drs said that "everything looked normal."

We live in a very small community in western Canada. We actually had to travel 4.5 hours to Vancouver to see the pediatric GI and to have the biopsy, therefore information, education and medical professionals knowledge is extremely lacking.

I would like to know if my doctors blood work is a confirmed Celiac, or what those numbers actually mean. No one seems to be able to tell me. I want to start a gluten-free diet but I don't know if I should wait for the biopsy results (could be up to 4 weeks) or can I start now?

Can someone point this confused mommy in the right direction?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


My almost 4 year old has chronic constipation since birth so I finally got our pediatrician to try to figure out what's wrong. She had some blood work come back in January with a positive ttg (77.8). The rest of the labs were normal. She had labs done again in May with another positive ttg (50). We finally got an appointment with a pediatric GI, who was horrible, last Tuesday. She just had a endoscope biopsy on Friday. The drs said that "everything looked normal."

We live in a very small community in western Canada. We actually had to travel 4.5 hours to Vancouver to see the pediatric GI and to have the biopsy, therefore information, education and medical professionals knowledge is extremely lacking.

I would like to know if my doctors blood work is a confirmed Celiac, or what those numbers actually mean. No one seems to be able to tell me. I want to start a gluten-free diet but I don't know if I should wait for the biopsy results (could be up to 4 weeks) or can I start now?

Can someone point this confused mommy in the right direction?

The leading researcher for celiac uses this following criteria in testing:

 

Positive blood test

Positive biopsy

Positive genetic test

Symptoms of celiac

Symptoms go away on the gluten free diet

 

Four of the five are enough for a positive diagnosis according to him (i'm sure another member knows of the doctor i'm talking about, I cannot remember his name at the moment).

 

As of right now, feel free to do the diet.

Share this post


Link to post
Share on other sites

I got my 2 year old's endoscope Wednesday and everything "looked fine"

Biopsy results showed different. So you never know. I know it takes longer there in Canada but we had full biopsy results Friday afternoon.

Share this post


Link to post
Share on other sites

Do you happen to know the normal reference ranges for those labs? Are they 0-20 like out here in Alberta? If so, his tests are rather high and that makes it less likely it is caused by something else. A positive tTG IgA can also be caused by diabetes, chronic liver disease, thyroiditis, and I believe Crohn's and colitis, but the tests are usually not much above normal when caused by something else. 91-99% of the time, a positive tTG IgA is caused by celiac disease.

This report has more info on the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

From what I have seen, most celiacs do not have damage visible to the naked eye. Most damage is found in biopsy,but there is a chance the damage could be missed if it is patchy.

Unless you are thinking of requesting more lab tests, which I don't think is necessary because you have a positive tTG already, she is done with celiac testing so she could move ahead with the gluten-free diet. If your entire house is going gluten-free, you should have the rest of the family tested first because it is a genetic disease.

You could also request nutrient testing for your daughter. Celiacs are often low in B12, D, calcium, ferritin, iron, potassium, and zinc. She can be gluten-free for those.

Dairy is sometimes an issue for celiacs for the first few months. If you don't notice a lot of improvement on the gluten-free diet, you might want to remove dairy from her diet for six months or so.

Best wishes. I hope she feels great soon.

Share this post


Link to post
Share on other sites

here's the link Shadowicewolf was referring to:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292448/

 

pg. 9 and 10 is where they talk about the diagnostic criteria with the 4/5 rule.

 

it's authored by Alessio Fasano who is considered the top celiac go to doctor and Peter Green who's also top notch.  Hope this helps!

 

 

The leading researcher for celiac uses this following criteria in testing:

 

Positive blood test

Positive biopsy

Positive genetic test

Symptoms of celiac

Symptoms go away on the gluten free diet

 

Four of the five are enough for a positive diagnosis according to him (i'm sure another member knows of the doctor i'm talking about, I cannot remember his name at the moment).

 

As of right now, feel free to do the diet.

Share this post


Link to post
Share on other sites
Ads by Google:


My daughter's endoscopy also looked normal during the procedure, but biopsies confirmed celiac. Her tTG-IgA was 65 the week before (and DGP tests were positive too). Our pediatric GI does not give Marsh scale ratings for young children, but he said that her intestinal damage was clear in the biopsies but not as widespread as he'd expect given her blood test numbers. We went gluten-free immediately after the tests were done and had already seen very significant improvements by the time we got the biopsy results five days later. Good luck!

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
      108,911
    • Total Posts
      943,459
  • Member Statistics

    • Total Members
      67,053
    • Most Online
      3,093

    Newest Member
    JAcooks44
    Joined
  • Popular Now

  • Topics

  • Posts

    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
  • Upcoming Events