Newbie - If Not Celiacs, Then What? +blood Results

[dmchr4]

My 8 year old daughter has digestion problems all her life - stomachaches, diarrhea, headaches, food allergies, lactose intolerance, etc. This summer she even broke out in shingles. She's very skinny and mainly loves to eat bread, pasta, crackers - gluten-filled foods! Anyway, we just got her tested for Celiacs, and these are her blood results:

Antigladian IgA 21 (Positive)

Antigladian IgG 161 (Positive)

tTG IgA 2 (negative)

Based on these blood results, the dr. said she most likely has celiac's and she should go on the gluten-free diet. He doesn't recommend doing a biopsy on a child.

Here are my questions I didn't think to ask:

(1) An IgG of 161 is way above of the normal (of 0 to 19), so if it is not celiacs, then what is it? Can she just be gluten intolerant and outgrow that later? The docter said he saw another child with similar numbers on the first and last one tests, but the second one was only 45 and he suspected celiacs on that child too.

(2) What are the "typical" numbers for celiacs with these blood tests? Is it just anything over the normal range?

(3) If you improve on a gluten-free diet, does that mean it's celiacs or could it be something else?

If she does indeed have celiacs and she feels better on a gluten free diet, that would be perfectly fine with me, I'd love to have her feel good. But I'd also like to know if you can have something else with these symptoms/test results. I guess I'm questioning the doctor saying he's pretty sure she has it, rather than saying if she goes on the gluten free diet and she feels better than she definitely has it. What else could make the IgG so high?

Thanks for any help!

[gf4life]

I would say to try the diet and if she feels better then go with the doctors diagnosis.

There are no "typical" celiac results. That is one of the many reasons it is a difficult diagnosis for doctors to make. The fact that she is positive on two out of three tests is a good indication that the tests may be right. You would have to try the diet to see if it helped her symptoms. It may take a few months for real relief of symptoms though, so don't give up if she doesn't feel better right away. You would also have to account for the almost unavoidable mistakes that are going to happen when you are getting used to the diet. We have all made those mistakes and there is only so much you can do. You learn as you go along. I also did not have my children biopsied. Both their doctor and I did not feel they needed it. The diet was a good test. They all have improved by leaps and bounds. If she improves on the diet, then you can pretty much be assured that it is Celiac, or it's lesser form of gluten intolerance. Either way the treatment is the same, the gluten free diet. And no she won't outgrow it. No matter how many times some people will tell you that their child had than and outgrew it, it just is not possible. It is genetic and you can't outgrow a genetic problem. It can sometimes seem to disappear in the pre-teen/teenage years only to eventually come back in adulthood, usually with different symptoms. This happened to me and I was 31 when I finally figured out what was wrong with me. I have had symptoms since I was a toddler!

God bless,

Mariann

[darlindeb25]

i would love for my daughter to try going gluten-free but as of yet, she refuses--wont give up her pizzas, hot wings, or chicken fingers--i told her she can still have those things, but has to make them herself---she says, "no go charlie" strange you mention shingles--when my daughter was taking drivers training, she broke out in shingles and to this day she still will have very painful ribs sometimes and she is now 22--i am going to mention this post to her---thanks, deb

[gf4life]

My oldest boy, who is now 10, had chicken pox when he was 3 yo. He broke out with a good sized patch of shingles on his abdomen this last spring. It was very painful, but we caught it early and was able to get him on some pain meds for the nerves. This was about a month and a half into being gluten-free.

My middle boy, who is now 8, had chicken pox when he was about 1 1/2 yo. He got small patches of shingles when he was 3, about 3 times. None since. I don't know if it is related to gluten intolerance, but it seems that a large number of us (or our children) have problems with shingles.

My father who is 54 had a horrible attack of shingles last year. He has not been tested and doesn't even want to know about gluten intolerance. "Nobody in my family has a problem with wheat". That is what he told me when I tried to bring up the subject. Well I have two different genes of the same strand that both cause problems with gluten, so he at least is a carrier and has the possiblity of having a problem...

A lot of people don't want to accept that they have a problem with gluten. For me I was happy, not that I had a disease, but that I finally knew what was wrong with me. I had always felt sick all my life. I hated feeling that way. I would rather give up all the great tasting food in the world for better health, although I know we don't have to, there are still plenty of great tasting foods available to us! It is not as bad as it could be.

[tarnalberry]

There isn't a "normal celiac range". If you're above the cutoff, you're positive. I don't see, based on those numbers, any reason to think she's NOT gluten intolerant. Unfortunately, despite whatever symptoms she may experience, you do NOT grow out of gluten-intolerance. If she eats gluten again, she'll do some damage to her intestines. (Of course, accidents happen, and the gut can heal, but someone who is gluten-intolerant should not knowingly consume gluten ever.) The diet takes some getting used to, but it's quite varied and can be very healthy.

[dmchr4]

With the IgG being so high, I assume that means gluten intolerance. I'm not saying I don't think she ISN'T gluten intolerant. I guess I'm just confused because it seems like that if you're positive on these blood tests you've got a problem, so why would it NOT be celiacs. There's an 83% (or whatever) chance that someone has celiacs if you have positive results on the Antigliadian IgA & the IgG, but I just wonder what it means for the other 17%. Yeah, maybe it sounds like I'm grasping at straws (no one WANTS to have celiacs), but I still have to wonder.

We ARE doing the gluten-free diet - she's been on it for 6 days now, and still feels lousy. (stomachaches, diarrhea, headaches, hives) But I know it can take a while, so we're hanging in there.

The other problem we have is that she is an incredibly picky eater. She will only eat bacon, pepperoni and sausage by way of meat, and rarely will eat legumes. She will eat some fruits and veggies but it's not her favorite. She's not too keen on rice or potatoes. So I'm afraid she may not improve if she doesn't get enough to eat on her very limited diet.

I mentioned the shingles because the dr. said it may be related. Shingles is Herpes Zoster and I guess is related to the derma herpa whatever skin condition associated with Celiacs. Interesting that other of you have had children with this problem too - it's rare in kids!

[gf4life]

The celiac rash is called Dermatitis Herpetiformis. But I have never heard of it being related to Herpes Zoster. The only reason it is called herpetiformis is because the rash appears "herpes like" in the way it looks, but not in the actual disease.

I always thought shingles was rare in children too, but I have actually met a lot of people who have had their children break out with it, so go figure. And most of those people are not Celiac and neither are their children, unless they are some of the many undiagnosed...but that is a completely different issue!

[FreyaUSA]

Out of curiosity, did these children that got shingles have chicken pox? Sounds like a stupid question, but I'm wondering if kids that get the chicken pox shot can still get shingles.

Anyway, make certain your daughter has a good multi-vitamin! Other than that, if she's like my picky 10 year old, she will find things she will eat. She may try to make you feel like the meanest mom in the world (but I already have that title, so you can only be runner-up ) but I guarantee, she will eventually eat something. I did find that setting down firm rules really helped. I didn't want food to become more of an issue in our lives than it already was. We have to eat, he has to eat, eating gluten-free is just how it has to be AND he needs to learn to eat well so he can start growing and, hopefully, put on some weight (for some reason sweets are not on his to avoid list. )

What I did was serve just a little (an unintimidating portion) of what we're eating to him (we're all gluten-free so there's no jealousy going on) and he had to try everything. If he ate it all, he could have dessert. If he didn't, he couldn't. I would allow him to get something healthy that he liked (a bowl of cereal usually because I refuse to run a restaurant) but only after trying everything. No dessert afterwards though. If he had a fit about being starved, I would bring out his cold plate of untouched food and he could now try everything (not a microscopic bite either while I gave him a nice accounting about how much better things are when warm) and then he could have his bowl of cereal. If he refused, it was his choice. I refused to feel guilty when all he had to do was eat one green bean! In the beginning he would, of course, often wait till bedtime to complain. I gave him three chances, first time, I let him eat with an accompanying lecture. Second time, told him this was unacceptable (blah blah) and the last time. Third time, he slept hungry (though I did offer to let him eat his cold plate of food, but no chance of cereal.) He goes to sleep hungry now only once every few months, I guess he has to test us to make certain we haven't become manipulatable again. But, he eats many vegis now, really likes beans (go figure), plain meats, etc. A much more varied diet than before!

Granted, he still hates mixed up foods (casseroles, "stuff on a plate" meals) so I try to make certain his food, though it's the same as ours, is in seperate parts (meats, vegis, starches do not touch.) He really hates potatoes (texture problem, not taste) so I'll give him a piece of gluten-free bread with his favorite jam if we're having them for dinner. Someone on another board once said, if you give a child something 20 times, he'll start eating it. I think this is really works (except for true dislikes, but I think these are really few. And, like my son's dislike for potatoes, I think it helps to give a little.)

This is just how I dealt/deal with my picky eater. With restricting his diet like I have to now, I had to take a stronger stance on making certain he eats well. In the last five months he's put on a little weight (went from 10% in the charts to 15%) but he's lost the ultra-pale skin with the sunken, bruised eyes look (thank goodness.)

Good luck in working this diet out. It's not easy, but there are many things harder (or at least that's how I encourage myself some days )

[gf4life]

Out of curiosity, did these children that got shingles have chicken pox? Sounds like a stupid question, but I'm wondering if kids that get the chicken pox shot can still get shingles.

FreyaUSA,

I don't know if any of the other kids who had shingles had the chicken pox or the vaccine. I could try to find out.

For my own kids, my two boys had gotten the chicken pox early on (ages 3 & 1), and then my daughter got the chicken pox from my oldest son's shingles outbreak, only a week before she was due to have the vaccine at her pre-kindergarten checkup.

God bless,

Mariann

[nicolesmom]

dmchr4,

I understand you are concerned about your doctor's conclusions regarding your daughters gliadin "scores". However you are actually very lucky to have such a knowledgeable and open minded physician. My daughter's drs. have stated there is nothing wrong and nothing to worry about, even though her gliadin IgG was 68. Her total Iga was slightly decreased but not enough to be considered a true deficiency. She responds well to gluten-free diet, however her dad refuses to try gluten-free without a dr's order and diagnosis and she spends half of her time with him as we are divorced! So count your blessings!

As to other facors to increase the gliadin IgG, according to the labcorp manual: ...False positives are possible as other gastrointestinal disorders are known to induce circulating antigliadin antibody, mainly Crohn disease, food protein intolerance, and postinfection malabsorption."

Usually the doctor can easily rule out Crohn's and infection by symptoms and a CBC which is usually done along with the celiac screen to check for anemia. That leaves food intolerance. Most probably to wheat, though many celiacs also have intolerance to lactose, and less frequently soy products and/or yeast. Whether these other intolerances would increase the gliadin or if the gliadin is strictly specific to wheat, I'm not sure.

Also, the tissue transglutaminase or ttg-iga will only be elevated once damage has occurred to the intestines. It is possible to be sick or have a reaction to gluten without it actually causing damage. (Similar to the fact that my daughter has diarrhea every time she eats peaches, but that doesn't mean damge is occurring.)

Hope this helps. Keep the faith...

PS Labcorp stands for lab corporation of America and is one of the labs our office uses to test for celiac.

[dmchr4]

My daughter had chicken pox at 2 months old. The shingles occurred twice this summer (age 8.)

Nicolesmom,

The dr. we went to actually has celiacs himself, so he certainly does know a lot about it. But I guess I'm just a bit wary because I almost felt like he's on a celiac disease crusade - meaning I felt like he was saying I feel so much better, you have some of the same symptoms, so it must be celiac disease.

That is interesting to see what the other false positives could be. I know that she does have many many food intolerances. Well, in the meantime we'll just keep on with the gluten-free diet and think about testing the other family members. I'm just actually surprised that my dr. said not to worry about testing them unless they also have symptoms.

Freyausa,

Maybe I just haven't been consistent enough with her, but her eating has ALWAYS been a battle. She has major texture issues too, and will not eat most meats because of it. I'm always afraid I've completely ruined her eating habits and that she'll have an eating disorder when she gets older (if she doesn't already!)

We've tried the "try one bite" thing, but she invariable ends up making herself throwup or screaming for hours on end. (One time she refused to eat a bit of her cheese stick - (that she liked!), made herself throw up, and wouldn't eat cheese again for 5 years.) She will only try something new maybe twice a year. Maybe we just haven't been consistent enough. And yes, I'm definitely in the running for Meanest Mom in the world! I guess I just have to toughen up a bit so I can win the crown. I have been giving her pep talks that once on a gluten-free diet, many people's tastes change and I tell her she'll most likely like more foods when she starts feeling better. I've generally just been allowing her to make whatever she wants for herself for dinner from a list of "acceptable" options (I wrote up a list of easy to make healthy options).

Anyway, you've convinced me to try it again. I think that after she's been on the diet for a month, we will start your method. I'm printing it so I will not forget to be tough. She's the only gluten-free one though, so I'll only make her try the things that are gluten-free!