Looking for Advice

[RaRaLorna]

So my 7 year old daughter was just tested for celiac using IGA and TTG IGA numbers, her IGA came up on the high end  of the normal range. OK. Normal....

The part I'm concerned about is the TTG IGA numbers were ASTRONOMICAL, marked as greater than 2500, stating that normal is less than 15.

So with numbers that crazy high should we just re-test the blood work before we go to the GI doctor like the ped. suggested? I mean reading other accounts on here people are saying 200 is SUPER HIGH, so would this even be a realistic number?

Thanks for any input!

[GFinDC]

A retest sounds like a good idea RaRaLorna,

You could also get the other antibody tests done at the same time, called a full celiac panel.

The other tests are

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (ttg) IgA
Deamidated Gliadin Peptide (DGP) IgA
Deamidated Gliadin Peptide (DGP) IgG
Total Serum IgA

[tessa25]

When I was researching celiac there were people with high numbers like that. So it's not unheard of. I'd go to the gastroenterologist.
 If celiac is diagnosed and the gluten-free diet is started those numbers will drop quickly.

 

[RaRaLorna]

4 hours ago, tessa25 said:

When I was researching celiac there were people with high numbers like that. So it's not unheard of. I'd go to the gastroenterologist.
 If celiac is diagnosed and the gluten-free diet is started those numbers will drop quickly.

 

Really? Bummer, I was hoping it was more likely just a fluke botched test or something. 

[RaRaLorna]

Just wanted to update, we did go ahead with another blood test. It came back the same at greater than 2500, normal 15. My husband was adamant that we get the scope done, so we've since done that as well. She has been diagnosed as celiac with her biopsy.  

Now I'm trying to get my husband to understand the reality of cross-contamination. He doesn't think it would be a big deal for her health. I completely disagree based on what members of this forum have written as well as other articles I've read. How do I convince my husband that I need to get all of the glutened plastic storage items out of the house? I would love articles that I can send his way that shine light on the true nature of gluten and celiac. That it's much more than straight up eating a slice of bread and little crumbs are just as dangerous.

How much cleaning out of the kitchen is truly necessary to make the kitchen a safe place for my little girl? We will be getting blood testing done on all of the rest of us soon.

Thanks!

[Jmg]

28 minutes ago, RaRaLorna said:

Now I'm trying to get my husband to understand the reality of cross-contamination. He doesn't think it would be a big deal for her health

Tell him you're happy to accept his viewpoint if he can find one respectable scientific institution's website that will back him up. Give him the list I'll paste below this reply as a starting point. 

When he fails, which he will because the science is crystal clear, point him in the direction of any one such website - University of Chicago has a good one:  

Open Original Shared Link

Quote

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the small intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. Antibody levels take a long time (sometimes more than a year) to normalize after a person has stopped eating gluten. 

The average lay person doesn't understand that it's the bodies own immune system which is reacting, and that to the immune system a breadcrumb can set off a major response. Your husband may be translating his own knowledge of people with mild food intolerances, say to spicy food, and thinking that your daughter's celiac is comparable. It's understandable why he may think so, but he's 100% wrong to do so and there's a wealth of peer reviewed scientific evidence to back that up.

It's also key to explain that the reaction to gluten may present in different ways as your daughter progresses on the diet. Show him this page:

Open Original Shared Link

and ask him to think how he'd feel if a stray breadcrumb manifests on your daughter as a neurological symptom or painful skin rash that may take months to clear up?

I'm sure once he has the right information he'll doubtless do everything in his power to keep her safe. 

If you still have a problem come back, there's a link to a study which talks about increased mortality rates amongst celiacs that slip up on average once a month. I'll find it if you need it, but you shouldn't do once your other half has had a chance to read up on this. 

Best of luck to you all

 

 

Other resources: 

Open Original Shared Link - a collection of questions and answers from a UK based Celiac organisation

Open Original Shared Link - a guide to the diagnostic process from a UK perspective.

 Open Original Shared Link - Advice from the University of Chicago's Celiac Disease Centre 

Open Original Shared Link - Advice from University of California, San Diego Celiac centre

Open Original Shared Link FAQ from Canadian Celiac Society

Open Original Shared Link - screening info from celiac.org

Open Original Shared Link - Testing info from Beyond Celiac 

[cyclinglady]

I think a gluten free household could make a huge difference in your daughter's health, especially with other small children around.  Your other children (and you and hubby) should be tested before going gluten free.  My kid eats gluten.  She just consumes it outside the house (usually at school). 

 

[Ennis-TX]

Going to copy and paste a rant I did quoting multiple people from the community,

"Celiac Disease, people tend to think that it is a diet related issue and just gives us a stomach ache, well its not, A LITTLE IS NOT ALRIGHT! Celiac disease is an autoimmune condition and that means the bodies own immune system attacks itself. So anytime we eat even a tiny amount of gluten, the same immune system that defends us from germs and pathogens springs into action to protect us from the gluten. But the attack on the gluten is misdirected to our own body tissues instead (In my case my nervous system, brain, and intestines). The immune system doesn't give up fighting invaders quickly, it will continue making new antibodies and killing them there gluten critters until the last vestige of the horse they rode in on is gone. And then it may keep producing attacking antibodies for a few weeks or months later just in case. When the immune system can find and destroy germs that are too small to be seen with the naked eye, you know it can react to a tiny crumb of gluten. We could feel the effects within hours or we could feel them weeks to MONTHS after a cross contamination exposure (dipping a wooden spoon from a pot of whole wheat pasta water into a gluten-free pasta pot). We can develop other AI issues and those that occur most often are Hashimoto's Thyroiditis and Type 1 Diabetes and could even develop cancer.

Gluten as we mean it in relation to celiac disease is a protein molecule in wheat, rye and barley, and products derived from these such as Malt, Maltodextrin, Vinegar, Food Starches, the list goes on as to what all it can be found in by other names. And think of it like this, it is a protein, like your blood, do you think you can clean up blood good enough that it can not be swabbed for and picked up by a forensic team? Gluten is the same way with cleaning up, almost impossible to clean a porous surface and just wiping it off does not work"

I take it you have already read the newbie 101 page and a few of the stories here, I have a few links to some places to get foods, brands that make gluten-free versions of processed food staples, etc to make the transition to a gluten-free household easier. Though I would normally just suggest a whole food diet, I think if you use the mindset your just changing brands and only buying gluten-free certified items it will make it easier for the common person.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

I wish you luck and looks like JMG has provided some great resources and information.

[plumbago]

I just want to make sure I understand -- your husband is concerned and wants to get an endoscopy done, but he's not too worried about cross contamination?

[GFinDC]

17 hours ago, RaRaLorna said:

Just wanted to update, we did go ahead with another blood test. It came back the same at greater than 2500, normal 15. My husband was adamant that we get the scope done, so we've since done that as well. She has been diagnosed as celiac with her biopsy.  

Now I'm trying to get my husband to understand the reality of cross-contamination. He doesn't think it would be a big deal for her health. I completely disagree based on what members of this forum have written as well as other articles I've read. How do I convince my husband that I need to get all of the glutened plastic storage items out of the house? I would love articles that I can send his way that shine light on the true nature of gluten and celiac. That it's much more than straight up eating a slice of bread and little crumbs are just as dangerous.

How much cleaning out of the kitchen is truly necessary to make the kitchen a safe place for my little girl? We will be getting blood testing done on all of the rest of us soon.

Thanks!

Hi,

If the whole family is going gluten-free, then it will be simpler.  If not, then you will have a shared kitchen  with gluten eaters.  You'll  have to watch out for cross contamination in condiments like peanut butter, mayo, jam etc.  You'll need separate containers of these foods just for her.  Any shared foods with gluten eaters is risky due to potential contamination.  She'll need a separate gluten-free toaster.  And gluten-free collander.

You can't stir a pot of regular gluten pasta and then use the same spoon to stir gluten-free pasta.

A shared kitchen is possible, and I use one myself.  But I have a separate small refrigerator for my food.  I rinse silverware and dishes before using them.  I also cook my own food and don't trust others to make gluten-free food usually.

You can get Mission brand corn tortillas pretty cheap and they are gluten-free.  Udi's gluten-free bread is available in some stores.  You can also make gluten-free corn muffins etc fairy easy.

The immune system attacks and destroys germs that are too small for us to see without a microscope.  So it doesn't take much to start a reaction.