Asymptomatic Celiac Disease?

[Veghead1234]

I apologize if this has already been asked. I didn't see anything about it. My daughter was diagnosed with Celiac disease a year and a half ago (she was 9 at the time). She had no symptoms at all, other than that she wasn't growing. They suspected celiac after a blood test, then confirmed it with an intestinal biopsy. 

 

My question is, do any of you not have symptoms? Or did you not realize they were symptoms until after diagnosis? If you didn't have symptoms before, do you now notice any since being gluten free for a while?

 

Since she's a kid, my daughter might not be very sensitive to symptoms if she has any. The only symptom I've noticed is gas (she has less since going gluten free). But the lack of symptoms makes it really hard to know if we are getting hidden gluten at restaurants (which we don't go to often, but do once in a while) or in foods at home. Her blood levels have gone way down, but aren't back to normal according to the doc 18 months after starting the diet, so it makes me wonder. She is growing again, like a weed, so I know it's better. I just don't know how to be sure her diet is completely gluten free. I'm also not sure what they are testing for, but hers was at 11 last time and the doc said it needed to be under 4.

 

By the way, I am new to posting on this forum, though I have been looking things up on the site since my daughter's diagnosis. It was just easier to make the whole household gluten free than to worry about cross contamination, so we are all gluten free by association. It's nice to meet you all!

[cyclinglady]

Welcome to the forum!   Please take full advantage of everyone's wisdom and advice on Celiac Disease and Gluten Intolerance.   I have found it to be invaluable and such a comfort! 

 

I guess you could say I was asymptomatic.  I went in for routine colonoscopy and the gastro reviewed my chart.  He said that because I had anemia and Hashimoto's thyroiditis, that I  could have Celiac Disease.  I had no abdominal symptoms at time and since I have a another genetic anemia, my GP doc overlooked my amenia (out-of-range) hemoglobin.  The thyroid problem was diagnosed over 15 years ago.  The diagnosis was a complete shocker since my husband's been gluten free for 12 years.  Really?  Both of us?  What are the odds?  

 

I can say that between the time I did the blood test and endoscopy, I did start to develop abdominal symptoms -- but then I ate a loaf of bread a day, not to mention the cupcakes, cookies, etc!  It took me about 6 to 7 weeks to eliminate the abdominal symptoms after going gluten free.  After that no more symptoms except when  I recently got glutened at a restaurant and got pretty sick!  So I think that the longer I have been away from gluten, my reactions to it are increasing.  I had been worried that I wouldn't really be able to tell if I accidentally got glutened.  That's not an issue for me anymore.  So, I understand your concern about accidental glutening.  

 

What a great family to be supporting their daughter/sister!  Our house is gluten free too (a few packaged items are gluten that my daughter takes to school (e.g. Smuckers PB & J sandwiches).  

[psawyer]

Welcome to the community.

Restaurants are tricky. But at home, everything you buy will have a label with the ingredients listed. You need to learn how to read and understand them.

In the US and in Canada, wheat is an allergen whose presence must be clearly disclosed using the exact word "wheat."

Rye doesn't hide. It is clearly labeled and found only in places you would expect, in breads like rye and pumpernickel. (And whisky, but distillation renders the finished liquor safe.)

Barley is sometimes listed as "malt." That is the exact word "malt" and does not include other ingredients containing the letters M-A-L-T such as maltose and maltodextrin. It could possibly be hidden in "flavors," but that is not at all likely. Malt is an expensive ingredient which the company will be proud to brag about--there is no reason to hide it.

Yeast extract can be produced using barley. To me, it is not a concern, because the yeast extract (the ingredient) does not contain detectable gluten using the most sensitive tests available today. The ingredient then forms a very small part of the finished food product. Most experts set a limit of 20 parts per million (ppm). With yeast extract, we are talking about parts per billion in the finished product.

There are a number of companies, including giants like General Mills, Kraft and Unilever, who will always clearly disclose any gluten-grain presence. There is a more complete list Open Original Shared Link. If you don't see barley, rye, oats or wheat named on their label, it isn't in there. Don't worry that some of the information is old--ingredients change all the time, but company disclosure policy does not. In my thirteen years on the diet, only one company has retreated from their disclosure policy--Hershey.

[GFinDC]

Hi Veghead,

 

Yes, there are some members who don't have symptoms.  Not having symptoms is known as silent celiac,

 

It will make things more tricky.  You might find it simpler to eat mostly whole foods, and avoid processed foods.  Try to stick with foods that have minimal ingredients lists.  3 ingredients is great, but a few more sometimes is ok.  It's best if all the ingredients are actually food too, not chemicals of some sort.

 

Once she has a stable, safe diet, the only trick is to make sure anything added to her diet is safe.  Anything she eats needs to be a known safe food.  Don't forget that everything counts, including vitamin pills and meds and drinks.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Veghead1234]

Thank you for the replies! It has been a challenge without symptoms, since we just don't know whether she's been "glutened". The hidden barley is one that really chaps my hide. It doesn't seem like a big inconvenience for the manufacturers to just list barley, you know? We don't have symptoms to let us know if something hidden is causing intestinal damage, so it would be really much easier to see it on the label.

 

I think maybe my daughter has symptoms, but just doesn't recognize them because they seemed normal to her for all her life. I was thinking that after we get her levels all good and her intestines healed that I might give her a big Krispy Kreme (which was her favorite) and see if she notices symptoms. Would that be really irresponsible to do? Could it set her way back? I thought it might be a way that we could figure out how she feels when she eats gluten (plus give her one last glutenous treat).

 

By the way, does anyone know what the antibody is that the doctor is measuring that's supposed to be below 4? I've seen some acronyms for stuff, but the normal range was under 20. Also, I heard about a drug they are developing to allow celiacs to eat gluten sometimes without symptoms or intestinal damage. I don't think it would replace a gluten-free diet, but might be a way celiacs can "cheat" without getting sick. I don't know much about it, though. Has anyone heard of this and have information? My daughter has heard this and gets really excited, but I would think it could be 10-20 years before something like that gets approved and available.

[eers03]

I am considered atypical (non-symptomatic) celiac.  It took years for mine to show itself.  I could eat a pizza and not double over in pain or spend my evening in the bathroom.  I am very active.  I noticed my body not recovering from workouts as quickly, I stayed ridiculously thin for a guy that is 5'11.  My stools were a little on the looser side but nothing noteworthy.

 

Me, my family, my friends just always thought I had a REALLY fast metabolism.  Turns out I am Celiac and was malnourished.  My liver enzymes became elevated and my bone density is below average.  

 

No real symptoms for years but it finally started catching up to me over time with the symptoms mentioned above along with quite a list that I am not even mentioning.  On a gluten free diet, my liver enzymes plummeted. 

 

So, could I cheat and eat something with gluten without vomiting?  Yes.  Is it a good idea to cheat once per month?  Absolutely not.  I wish I could recall the study but there was research out of Europe that revealed eating 1 cheat meal containing gluten once per month increased your mortality rate over the long term (several years) by 600%.

 

I may as well start smoking cigarettes if I'm going to eat gluten once per month.  It would be about as safe or safer.  

 

I am really sorry your daughter is having to deal with this but I am really grateful for you and her that you figured it out early.  The younger, the better for purposes of healing.

 

Good luck.

[Veghead1234]

"So, could I cheat and eat something with gluten without vomiting?  Yes.  Is it a good idea to cheat once per month?  Absolutely not.  I wish I could recall the study but there was research out of Europe that revealed eating 1 cheat meal containing gluten once per month increased your mortality rate over the long term (several years) by 600%."

 

Whoa! That is a serious statistic! That makes me rethink my idea to "test" my daughter and see if she notices symptoms.

[Lavell]

I just got diagnosed through an endoscopy yesterday. I never ever thought I would have celiac. I was having issues with reoccurring alopecia and thyroid issues (kept going hypo and hyper in a months span). While testing for those issues, celiac came up. I never noticed any reactions or anything that would have pointed me to a gastro issue. I went gluten free for a month and a half before the doctor told me I needed to eat gluten for a few weeks before the endo. I did notice every time I had wheat products I felt bloated and uncomfortable for an hour after but then I would be perfectly fine. I was so sure the endoscopy wouldn't show anything abnormal...

Turned out my intestine looked horrible and the villi were completely destroyed. The doctor said he didn't even need the biopsy results and could tell the moment he saw my intestines that I had celiac. Crazy!

[TGK112]

I was asymptomatic. It was discovered after a blood test since I was losing bone density. It was then confirmed with an endoscopy. In retrospect, yeah I was a bit bloated and yeah I had lost some weight. I was quite nervous at first - since I never had any real reaction to gluten - I didn't know how well the diet was working. I had a follow up blood test and endoscopy after 6 months - which showed much improvement. The antibody which I think you are referring to is Transglut IGA - which is suppose to be between 0-3. The first time I was tested , mine was at 19. Six months later, it was 4. I will be tested again after a year - hopefully by then it will be a bit lower. Having a follow up gave me a great deal of peace of mind - since I felt that I personally was such a poor barometer for gluten.

[T.H.]

My daughter was asymptomatic, too, at first. She was diagnosed at age 11.   She was only tested because we'd just had the second diagnosis of celiac disease in the family and were testing everyone. All we knew was that she was tired and she had been slowly growing more emotional and anxious over the previous few years. She HAS developed gastro symptoms now (she's 15), but in a way, it's just allowed us to confirm that some things we THOUGHT were symptoms actually are, because they correlate with the gastro trouble.

 

If it helps, here's what some of them were for my daughter:

1) mood change. She'd get much more anxious and/or panicky over problems. Frustration tolerance would drop like a stone and she'd start worrying about everything. In bad cases she's have an anxiety attack or a few days of depression-like behavior.

 

2) sensory changes. This one has been SO weird. She gets more sensitive, I guess I'd say, to light and sound. Bright lights bothered her eyes more, sounds were too loud and hurt her ears more.  Sometimes taste would change a bit, where things tasted more bitter or sour than they should. The behavior changes we notice are that she'll start complaining more about music or the TV being too loud, she'll try to avoid her food more or complain more about the taste, that sort of thing.

 

3) Exhaustion - she gets MUCH more sleepy. It's like trying to wake up a kid who was sedated, trying to get her up in the first few mornings after she gets glutened. And sadly, she can ALSO get worse insomnia, so she's more tired but can't sleep. 

 

 

Just as an aside - did the doctor mention to you that it's recommended that you and any other children you have be tested for celiac disease too? And retested periodically if you test negative (every few years or if you develop symptoms). Close relatives to celiacs are in a higher risk category, where something like 1 in 22 have the disease. And considering that your daughter's case had no outward symptoms, periodic testing sounds like it might be of benefit, you know?

 

Take care, and good luck - it's hard to keep track of it all when they are at this age!