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

Suspected Celiac Child

sand19

By sand19
in Introduce Yourself / Share Stuff

Recommended Posts

sand19 Newbie
sand19
Posted

Hello, I'm new to this forum and it looks like I've come to the right place!! My 9yr old Daughter has had stomach problems since she was a baby. Initially we thought it was a problem with dairy but staying away from that has never really solved her problems. Recently things have been getting worse so I took her to our family doc who asked us to follow a strict dairy free diet and keep a food diary. We did this for 4 weeks but found no sig. improvement. She then told us to try and go wheat/gluten free and has referred us to a ped.

She has been wheat free for a month now and is feeling MUCH better. We See the Ped. at the end of this month. I'm not sure what to expect. What sorts of tests are done on children? Is there anything I should be aware of? I have been told that there is a very invasive/uncomfortable test that is done, is this worth it? Are there blood tests that are done? Does an allergy test show anything if there is no skin reaction?

We are in southern Ontario and waiting to get reffered to a pediatrician takes FOREVER. This is why I want to make sure I get all the bases covered when we finally get in there!!

Thanks for all your help, Sandra

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

Celiac.com Sponsor (A8-M):


Rondar2001 Apprentice
Rondar2001
Posted

Hi Sandra,

Welcome aboard. I'm in Calgary so I know the wait can be a long one. First off, be aware that your daughter needs to be eating gluten for any of the celiac tests to come back positive.

Our pediatrician started off with a blood test for the celiac panel, which came back clearly positive, then referred us to a pediatric GI doctor. This wait can be the longest, but with the positive blood work they rank you has a higher priority. We also made sure that we were put on the cancellation list, this cut down our time from referral to diagnosis to about 6 weeks (we were very lucky this way).

We did have the biopsy to confirm the celiac diagnosis. This test was very easy and not scary at all. They had a clinic about a week before, showing us where we would wait and explaining to the different children having surgery what to expect. We showed up at the hospital at 7am, an hour later they took her to the operating room and didn't even put in an IV until she was asleep. 30 minutes later she was in recovery and we were home by noon. We received a phone call a week later confirming what we suspected and made an appointment with the hospital dietician.

Hope that helps and good luck in your journey.

curiousgeorge Rookie
curiousgeorge
Posted

I am the celiac one in our house, but I asked our family doc for the blood work paper work for my kids and hauled all three to the sick kids lab for the blood work. I had it back in a couple of weeks. DD had the highest levels but not quite enough to be considered ceilac. All three are gluten-free now because my kitchen is gluten-free.

sand19 Newbie
sand19
Posted
  • Author

Thanks so much for the info. How long/much gluten needs to be in her system for tests to come back positive? We did a bit of our own experimenting and had her eat regular pasta a few days ago. I feel quite badly because she is still suffering 3 days later!! Can I just keep her gluten free until the day before our Appt.?

Sandra

rinne Apprentice
rinne
Posted
Thanks so much for the info. How long/much gluten needs to be in her system for tests to come back positive? We did a bit of our own experimenting and had her eat regular pasta a few days ago. I feel quite badly because she is still suffering 3 days later!! Can I just keep her gluten free until the day before our Appt.?

Sandra

No, in order for the test to show damage she must continue to damage herself. This is a difficult choice for an adult to make and I am sure an even more difficult one for a parent.

Some doctors will consider a positive change in health as a result of a gluten free diet as clear evidence of Celiac and diagnose it as such. While there may be good reasons for the testing it is not always required.

In my case the wait for an endoscopy was five months and given the pain I was in there was no way I was going to continue to eat gluten.

There are alternative tests available through Enterlab but I have no experience of that testing although many others here have.

And hello and welcome. :)

sand19 Newbie
sand19
Posted
  • Author

Oh Man :( ! Good to know.

curiousgeorge Rookie
curiousgeorge
Posted

I would ask yuur family doc for the blood req. If you go to the outpatient lab at your local childrens hospital (sick kids or London children's) you shouldn't have to pay. I took all three of mine to Sick kids. I don't know how much use a ped will be with this unless its a ped GI doc. Really what you want ASAP is the blood work and any doc can order it. Its about $200 if you pay for it at a non-hospital lab in Ont. It would be very prudent to have the blood work in had when you see the ped isntead of waiting longer. She does need to be eating gluten in significant quantities to get a postive result.

You may just have to do the gluten-free thing yourself. An aquantance (sp) went down this road with her child. The child wasn't growning and they sent the kid off for testing. Wildly positive blood work and inconclusive biopsy and doc said keep eating gluten. I could not convice her that this was BAD for the child. Kid is now a teenager and their growth is stunted and eventuallly this poor child will be full blown celiac, of that I'm sure. If the mother had kept the child gluten-free, this poor kid could possibly avoid all the misery those of us who have been DX as adults have gone through.

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

Celiac.com Sponsor (A8-M):


sand19 Newbie
sand19
Posted
  • Author

I guess I'll just wait for the appt. now. It's on Mon. The closest pediatric GI's are in Hamilton. She is not tiny or not growing, but she just lives with constant stomach cramps, bloating and diarrhea. She ate gluten last week and it took her 4 days to feel back to normal. I'll ask the pediatrician for a bloodwork req. and then make her eat a regualr gluten diet for a few days. Since celiac is autoimmune, I would assume that the body would begin producing antibodies as soon as gluten is introduced to the system. If it is celiac, then a few days of gluten ought to do the trick shouldn't it? My understanding is that the longer you eat it the more damage it causes to the villi in the intestine and that is what you really want to avoid. This is why I want some sort of answer now so that we can avoid too much damage before she reaches adulthood. My husbands cousin was diagnosed as an adult but had to get really sick first before he was accurately diagnosed. I really just want to spare her the pain of having to go through that!!

  • 2 weeks later...
amber Explorer
amber
Posted
I guess I'll just wait for the appt. now. It's on Mon. The closest pediatric GI's are in Hamilton. She is not tiny or not growing, but she just lives with constant stomach cramps, bloating and diarrhea. She ate gluten last week and it took her 4 days to feel back to normal. I'll ask the pediatrician for a bloodwork req. and then make her eat a regualr gluten diet for a few days. Since celiac is autoimmune, I would assume that the body would begin producing antibodies as soon as gluten is introduced to the system. If it is celiac, then a few days of gluten ought to do the trick shouldn't it? My understanding is that the longer you eat it the more damage it causes to the villi in the intestine and that is what you really want to avoid. This is why I want some sort of answer now so that we can avoid too much damage before she reaches adulthood. My husbands cousin was diagnosed as an adult but had to get really sick first before he was accurately diagnosed. I really just want to spare her the pain of having to go through that!!

You need to be feeding her the equivalent of 2-4 slices of bread for 4 weeks for an accurate blood test. It doesn't have to be bread but just something high in gluten. I can understand your reluctance to do this and you need to discuss this further with your peadetrician.

I work for the celiac society in Australia and that is what we tell people who ask.

You can also ask for a gene test for celiac disease. This will not tell you if she is a celiac but it can tell you whether or not she has the gene for it. If she does not have the gene that she cannot be a celiac. If she does have the gene than she possibly could be a celiac. The problem is that 30% of the population have the gene and don't necessarily go on to develop celiac disease.

My daugther has had the blood test for celiac disease. Simple blood test followed by very quick gastroscopy which took all of 10 minutes. No pain, no problems.

It certainly sounds like she could be celiac by what you are saying.

sand19 Newbie
sand19
Posted
  • Author
You need to be feeding her the equivalent of 2-4 slices of bread for 4 weeks for an accurate blood test. It doesn't have to be bread but just something high in gluten. I can understand your reluctance to do this and you need to discuss this further with your peadetrician.

I work for the celiac society in Australia and that is what we tell people who ask.

You can also ask for a gene test for celiac disease. This will not tell you if she is a celiac but it can tell you whether or not she has the gene for it. If she does not have the gene that she cannot be a celiac. If she does have the gene than she possibly could be a celiac. The problem is that 30% of the population have the gene and don't necessarily go on to develop celiac disease.

My daugther has had the blood test for celiac disease. Simple blood test followed by very quick gastroscopy which took all of 10 minutes. No pain, no problems.

It certainly sounds like she could be celiac by what you are saying.

sand19 Newbie
sand19
Posted
  • Author

Thanks, we've since been to the appt. and, yes, we have to get her back on gluten just like you said. It's VERY hard to force a 9 year old to eat what doesn't make her feel good!! She does understand though that it's better to just do it now and get it over with. We've decided to give her the gluten in the evenings when she is home from school, it's easier to go curl up in bed with stomach cramps than to sit through lessons at school!

Just out of curiosity, does anyone know why your system has to be so saturated with it for the tests to come back positive?

Sandra

amber Explorer
amber
Posted
Thanks, we've since been to the appt. and, yes, we have to get her back on gluten just like you said. It's VERY hard to force a 9 year old to eat what doesn't make her feel good!! She does understand though that it's better to just do it now and get it over with. We've decided to give her the gluten in the evenings when she is home from school, it's easier to go curl up in bed with stomach cramps than to sit through lessons at school!

Just out of curiosity, does anyone know why your system has to be so saturated with it for the tests to come back positive?

Sandra

The reason that she needs to be eating gluten is that otherwise the blood test will not be accurate and could give you a false negative. How long did they say that she needs to be eating gluten? Maybe being a child they might agree to less time - a couple of weeks perhaps. I understand how difficult it must be to convince her to eat gluten and know that she will feel bad afterwards.

Perhaps she has been a celiac for a long time and it is a shame that they didn't get onto it earlier with her. Very frustrating for you as a parent. Has her growth been affected? Often celiac kids slow down in growth both in weight and height. My daughter went from the 50% percentile to the 10th but she was 2 years old. As soon as she went on the gluten free diet she bounced back and went back up to the 50% again. She is now 12 years old and a very healthy weight and height.

Good idea to give her the gluten foods in the evening as you said rather than before school.

Good luck with it all.

Did you ask about the gene test? I assume it is available in Canada.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,395
    • Most Online (within 30 mins)
      7,748
    Jessicarenee
    Newest Member
    Jessicarenee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.