Are you celiac aware? FAQ

[BlsdMama]

Ironically my son was "mis" diagnosed with celiac's when he was just itsy bitsy by his pediatrician and a blood test.

 

We took him for a second opinion. That doctor said, "Your pediatrician didn't know what she was talking about." That was EXACTLY what we wanted to hear and we went with that. It's incredibly rare anyway, right. :glare:

 

Maybe not so much...

 

DD #3 began bleeding in her intestines when she was 15 months old. Two endoscopies and a couple biopsies later they told us she had lymphoid hyperplasia (enlarged lymph nodes that were irregularly producing white blood cells) and an area of friability - an area like a soaked sponge, when stool would pass by it would ooze blood.

 

There were a few theories on why it happened (two doctors told me a reaction to a vaccine, an allergist told me a food allergy - most likely milk.)

 

At 36months we removed milk from her diet and the bleeding did stop. She still bleeds off and on but not regularly and not a LOT like when she was little.

 

Keep in mind, we figured child #2 is fine.

#3's bleeding stopped, she's fine.

 

 

Daughter #4 - This is our food allergy queen. We have headaches, itchiness, occasional eczema, a flare around her mouth when she drinks milk, moodiness, stomach aches, severe & often, headaches, brain fog... And, no, she's not a drama queen and she's not faking. I wish. We took her in for allergy testing- no histamine reactions at all. However, we did further intolerance testing and they found problems with eggs, gluten, and nuts. The egg was the big one. MANY of her symptoms go away with egg avoidance.

 

Child 1, 5, 6, 8, & 9 seem to be fine.

 

Many of my children tend to be small.

Child #3 was diagnosed "Failure to Thrive" because she was so underweight.

The ped. wanted to diagnose Ella as well. They aren't in the lower 10% or the lower 5%. There have been times when they simply are NOT on the charts. Rebecca is small-ish but Elizabeth is thin (though not terribly short) and Ella and Sarah are teensy tiny... Sarah is 4 and she weighs about 32lbs and Ella is 2.5 and weighs about 24lbs. They are both on the charts right now, though small.

 

My husband's side has a death due to colon cancer, a father with hypothyroid, and a mother who was all of 4'11" and 95lbs through high school but who now struggles with her weight & diabetes.

 

I'm thinking it is worthwhile to have more testing done for celiac.

Has anyone done genetic testing instead of the less reliable blood testing?

 

We give GF a try off and on but we aren't truly committed just because we aren't sure there is a reason for it and I think if we knew there was we could be committed. GF is very aggravating for me. :(

 

I'm thinking of testing #3, #4, and #7. If those three don't show positive, none of them will.

Edited August 13, 2012 by BlsdMama

[Soror]

We ended up with genetic testing because it got to the point that I was desperate for an answer and couldn't afford to spend money on tests that weren't reliable. Ds has 1 copy of Celiac Gene and 1 copy of interolance, I wish I could remember the exact genes he has now.

 

I was thinking that with the blood tests you are a lot more likely to have a false negative than a false positive but my memory could be faulty, I do know that the blood tests aren't that great and the biopsy isn't fool proof either.

[athena1277]

Genetic testing can only tell you if you have one of the 2 genes that give you a chance that you will develop CD at some point in your life. For instance we know that ds has one of the 2 genes, but he does not have CD. One day he could develop it and have to eat GF, but for now he's totally fine.

 

Your best bet is a blood test followed by an intestinal biopsy. That's what dd had several years ago and is still the "gold standard" despite other available tests. Be sure that your dc are eating a normal diet before testing.

[bettyandbob]

my boys had genetic testing years ago. dd is biopsy confirmed celiac. Our family went gf since she was only 4. We immediately noticed positive changed in oldest ds (youngest was an infant). So, we kept oldest gf. Genetic testing showed oldest had both markers and youngest had one. After the testing we did a gluten challenge. Youngest did not respond to the gluten challenge at the time. The challenge was 2 months. Our gastroenterologist wanted to continue the challenge for a year on oldest. Oldest was showing some reaction to gluten, but not enough in the blood testing to warrant a biopsy. We didn't want to continue with the challenge b/c ds's behavior was affected (he was 9 at the time). So, he's never been diagnosed, but eats gf. Youngest eats gluten away from home (usually at parties he attends), but now it looks like he may beginning to react to gluten.

 

It is my understanding that even if you test negative, if you have a genetic marker, you can develop it anytime. Adolescence can be a triggering event. Major illness or stress can be a triggering event to developing celiac as well.

[Nestof3]

With my mom, she had no symptoms at all until she was so anemic after an operation that they suspected she was bleeding out. They finally sent a camera down her and discovered her villi destroyed. She never had the blood test.

 

We all have. I have also gone gluten-free for months and didn't notice any difference. But, I don't have any intestinal issues either.

[Soror]

Dawn- I'm sure you're aware but for anyone else the symptoms of Celiac's are far more than intestinal. Ds had major scary behavior issues I get depressed. Celiac is linked to other auto-immune issues as well and also various mental illnesses.

 

Ds hadn't grown in at least a year by the time we had him tested, had constant instant diarrhea and as I just mentioned scary behavior issues. Not just acting out but just some behaviors that were so extreme I don't really like to talk about online. It was a very scary time. It was strictly food for him though and specifically gluten. I don't mention it much because a lot of people wouldn't believe that food could have such an effect.

[BlsdMama]

 

Ds hadn't grown in at least a year by the time we had him tested, had constant instant diarrhea and as I just mentioned scary behavior issues. Not just acting out but just some behaviors that were so extreme I don't really like to talk about online. It was a very scary time. It was strictly food for him though and specifically gluten. I don't mention it much because a lot of people wouldn't believe that food could have such an effect.

 

Soy does this for Rebecca. Not scary as in frightening, but scary as in seeing an 8yo with depression and moodswings just leaves you scared for her teen years... Life is going to be SO hard for her. :( She's such a beautiful, joyful, sweet little girl and I can tell you that I am sure I can see she is going to struggle with depression in her life. :( It just doesn't seem right.

 

I. Hate. Food.

 

:(

[Supertechmom]

And the testing does have false negatives. My daughter is a false negative on blood and biopsy but yet can not tolerate gluten at all ever. She is officially labeled " false negative Celiac confirmed through diet" :D And had no allergies at all in anyway. ( i do believe we tried a thousand ways to dx her with allergies) My oldest was barely positive on the blood test. And GI drs are notorious for misdx this in children unless you are dealing with the top specialist in the country. I would trust the ped long before I will ever again trust a GI dr.

 

Our gf trial was so positive and affirming that our children had severe issues with gluten that we've never ever looked back. Our daughter now is regularly in the 15-25% when she used to be about an inch below it ( at some point they stop figuring the percentiles in the negative and just begin using inches). Our oldest, the dr was highly concerned over his growth ( 90% at 2 yrs and predicted to be 5'9, 5% at 10yrs and predicted to be 5'0, 5'1 if he got that tall). Now, at 15 he's up to about 50% and is predicted to hit 5'6 possibly 5'8 as Celiac also delayed puberty and he's just now entered in it.

 

Celiac untreated can create a mess long term wise. I would go gf if I had any reason to think they had celiac.

[BlsdMama]

I think my biggest concern is DH. I suspect we will find that the girls do have the celiac gene and it came from his side. He eats the same diet as us and yet gluten just makes him gain & gain. :( He also craves it. (Well, of course, I do too, lol.) However, he struggles with high blood pressure and is pre-diabetic and I'm hoping if one of the girls show they are carrying the gene, then both of us go and get tested. :)

[Crimson Wife]

There is such a thing as non-celiac gluten intolerance. My youngest DD has that. She had the celiac panel twice because she was off-the-charts small (once at either 9 mos. or 12 mos., and again at 2 1/2 because sometimes testing as a baby can give a false negative). Both came back completely normal. No GI symptoms as far as anyone could tell.

 

When she was diagnosed with autism shortly before her 3rd birthday, I decided to give GF a try. Within 6 weeks, she had gone from <3rd percentile for both height and weight to 25th percentile for weight and 5th percentile for height. She was wearing a size 18 mos. back in December and by April was in a 4T. Our pediatrician says she sees that kind of rapid "catch-up" gain all the time in gluten intolerant kids who go GF.

 

If you've got off-the-charts small kids, I would do a 6 month trial of strict GF even with negative celiac tests.

[MomtoCandJ]

My dn has just been diagnosed through genetic testing along with others I am sure. She has thyriod disease, type 1 diatbetes and has heart problems (she was born with them) and am looking for recipes that we can make for her when she visits us and grandma and grandpa.

[Mom0012]

Genetic testing can only tell you if you have one of the 2 genes that give you a chance that you will develop CD at some point in your life. For instance we know that ds has one of the 2 genes, but he does not have CD. One day he could develop it and have to eat GF, but for now he's totally fine.

 

Your best bet is a blood test followed by an intestinal biopsy. That's what dd had several years ago and is still the "gold standard" despite other available tests. Be sure that your dc are eating a normal diet before testing.

 

Yes, plus I was told by my son's doctor that 30% of the population carries the gene for celiac, so just because you have the gene doesn't mean you have the disease.

 

In our case, my son had a positive blood test and a dramatic response to the diet. The response to the diet was enough for me and we never did the biopsy because I would have had to put him back on gluten for an extended period of time in order to do that. Not worth it!

 

Lisa