Possible Silent Celiac With Possiblle Celiac Son Needing Advice

[annarboramy]

Hi. I'm new to this site and I'm seeking advice. My 17-mo. son hasn't gained weight in over six months. After doing some reading, it began to dawn on me that, not only might he have celiac, but that I might as well. The thing is, I feel fine. However, when I was kid, I could not eat wheat, barley, or oats. My mom, when interviewed, said the doctor never said celiac - he just called it an "intestinal immaturity." I would have diarrhea whenever I ate grains, but around seven or eight, I just seemed to grow out of it.

The more I research about celiac, however, the more it seems there is a family history of it. All my fathers' brothers had associated diseases and died in their sixties, and my father just passed away (66) in February of esophogeal cancer, even though he never smoked or drank and was pretty healthy. I also have some cousins with clusters of symptoms that may indicate celiac.

So... here are my questions (sorry about the preamble):

1. My son has no symptoms except for failure to thrive and occasional (recently) very loose stools or diarrhea. I went a weekend gluten-free, and his stools changed quite a bit, but I resumed gluten when I read that he needed it to test positive. I am desperate to go gluten-free. RIght now, I'm actually hoping he is celiac because at least it would be an answer to his thinness. We just got blood drawn today for testing. Should I just go gluten-free - let him put on weight (if this is indeed the answer) and then get a biopsy done later after letting him eat some gluten (he doesn't seem to really react all that much)? I feel right now like all I want to do is get him to gain weight - and I shudder at the thought of a biopsy.

2. Once I'm done breastfeeding (during which time I'll be squeaky clean for sure), how pure should I be if I'm diagnosed? Again, I have no reaction to gluten now that I've ever noticed and I feel pretty good. I'm willing to never eat bread products again, but if the occasional malt vinegar sneaks into something I eat in trace amounts... is it like I've never gone gluten-free at all? I want to avoid all the health problems my uncles and my father had later in life if I can!

3. Is there a good resource or group for silent/latent celiacs? I can find very little research on it.

I really appreciate any direction more knowledgeable people can give me on these questions. From the reading I've done over the past few weeks, it seems to me that the medical community in the US has yet to catch up with the reality of celiac, so I don't know if I even trust my doctor or even pediatrician with some of these questions.

[AndreaB]

If you want to have a biopsy done you can't go gluten free. It will mess up the results of the biopsy. If the blood test comes back negative you do have another option if you want to spend the money. My family, except infant son, went through enterolab for testing. They can only tell you if you have an intolerance, but it's still gluten free for life. They need 1/2 cup stool sample to do the test. Check out their site Open Original Shared Link and see what you think.

Secondly,

If you have celiac or gluten intolerance it is gluten free for life. You need to be very careful about ingesting gluten. I am one that never had symptoms to speak of. I did have joint pain that I recently noticed went away when I went gluten free. Now if I get glutened, I have a short term reaction, usually clearing up within 24 hours. Another poster posted about it taking 3 weeks for your system to get over a glutening.

I'm sorry, I don't know of groups out there, but maybe someone else does.

I highly recommend enterolab if you don't want what they call the "gold standard" diagnosis (which is biopsy).

Welcome. You will find a wealth of knowledge and a great group of people here.

[lovegrov]

It sounds to me like you had celiac as a child, which means you still have it. You should be tested.

As long as eating gluten isn't incapacitating your son, I wouldn't take him gluten-free until all the testing is done.

The resources for silent or latent celiacs would be the same resources for anybody else with celiac. If you do go gluten-free, you might discover after a while that you will start reacting to gluten mistakes. That's what happened to me.

richard

[Nantzie]

I just posted a topic about why kids used to be told they grew out of celiac that sounds like your situation. I was going to post it here, but I figured a lot of people might be interested in the topic, so I started a new one.

Here's the link -- Open Original Shared Link

Okay, your other questions --

I've been gluten-free for over six months, but the kids thing is new to me, so I'm just learning too. From what I understand, blood tests and biopsies can produce false negatives in kids especially, because not enough damage has been done to show up on the tests. I chose to go with Enterolab, which is a private lab that specializes in gluten intolerance and other dietary intolerance issues. Instead of testing blood, they test stool. They send you a test kit in the mail and you send it back. The test they do detects the same thing they're looking for in your blood, but it shows up much more reliably in your stool. I trust them, and even my daughter's pediatrician trusts them. The best thing is that you don't have to be gluten-free to get tested. They say that they have found that they'll get a positive result even six months to a year after a person goes 100% gluten-free. Whereas with blood and biopsy, you have to be eating the equivalent of three slices of bread a DAY for three months for the tests to be accurate (ow, cramp!) . I couldn't do it. Once I figured out myself what was causing my problems, I had a hard time even making myself eat it at all, much less that much every day. So I would seriously consider going with Enterolab. When I got positive results for my daughter, I brought the results to her ped, and he referred her to a ped GI for follow-up. I was lucky with that. I was giving it an 80% chance going into the appt that he didn't know anything about it. Turns out he knew quite a bit.

As far as you being latent/silent and going gluten-free, that's something that you won't know until you try it yourself. Some of us were eating gluten without obvious reactions or even suspecting that gluten was a problem before we found out about celiac. Some start getting obvious reactions to gluten only after going gluten-free. But then there are a few who still don't get reactions. I remember one member in particular who had a positive biopsy and was only tested because a relative had been diagnosed with it. She had no symptoms at all. She said that she had a hard time because she didn't get a reaction from it, so didn't know when she had accidentally ingested gluten. Because she knew for sure (biopsy) that the gluten was damaging her, it worried her a little. Although she was thankful she didn't have the symptoms most of the rest of us do, she kind of also wished she knew somehow when she accidentally got some. My reactions only last for a few hours, but sometimes my skin reacts and that can last three weeks.

Well, welcome to the board. Read the archives, ask questions and make yourself at home.

Nancy

[annarboramy]

Thanks everyone for your advice!

The update is that my son's blood test came back negative. I'm not sure what to do now. His height and weight have rebounded a bit, which is good news (he's up from the 1st percentile to the 5th for weight, and from the 50th to the 85th for height). Now we're scheduled for a CF test - "just to rule it out." The CF doesn't really concern me (it's pretty rare) - I'm still worried about celiac. My son just doesn't eat that much gluten - he's never liked bread products, aside from the occasional noodle (and gluten through breastmilk), so I just don't know if he's been eating enough gluten to test positive anyway.

I am going to try to get the blood test myself as soon as possible - have been calling my doctor, but haven't connected yet.

I thought that, if I tested positive, that would determine whether I went ahead and pushed for a biopsy for my son.

I'm tempted though, even if there are negative results all around, to go gluten-free both of us for a trial period, and if he starts really putting on weight and something miraculous happens to me (though, as I mentioned, I feel pretty good, but maybe my psoriasis or carpal tunnel goes away or I suddenly can remember my students names better!), invest in the Enterolab tests for us both - as I understand it, we can still have some results there even after being gluten-free for a while.

Just wondering if that sounds like a good game plan, or if anyone has other recommendations. We meet with the pediatrician Fri. for checkup and immunizations.

Thanks everyone for your help and advice.

[daffadilly]

I personally would not recommend biopsy for a child. That is why I love Enterolab.com you can just get the genes test $168.00 & worth every penny. That also gives you defense against any family that will be sure to have something critical to say. You can also test for gluten sensitivity & dairy.

I think almost all kids come up negative on the blood test. I think especially if they are small.

The gluten-free diet is the real test to see if he is gluten intolerant & I think you have already seen that if you cut out gluten his stools immediately get better, poor little guy, no telling how bad he really feels. & yes one tiny little bit of gluten is enough to make him sick for weeks. That is why these kids do not want to eat, plus their tummy just hurts.

re you as a child, yes they used to teach that it was a childrens disease & you outgrew it. (& a lot of school nurses & doctors still believe that) - at least there were some savvy old doctors that had to use their head & was able to diagnose it, & maybe he was treating some more of your family & he knew that their kids had it also. these days doctors just run tests & write prescriptions. believe me there are plenty of angry 50 year olds that have a lifetime of damage that are really upset with being told that they did not have it anymore. Sometimes the symptoms get better at puberty, & some women report how great they always felt when they were pregnant, I think it has somehing to do with the hormones, but not sure of all the technical stuff. You are probably getting damage & will start to have more symptoms in the near future if you are not gluten-free.

Since you are not sick (but nursing...) you could continue to eat gluten & get a blood test, but if they do not run the right tests or even if they do it could come back negative. If you do that, I would not bother with an endoscopy, I would just get the gene test, that will tell you if you have the gene or genes.

at your age it would not even matter if you do not have damage, with your history & family history& your son & if you have the genes, well you can't get much plainer than that.

I would like to say that I think you are really smart for putting it all together & checking on the internet.

[annarboramy]

That's interesting,daffadilly, about women getting better during pregnancy. I wouldn't say that I felt great during pregnancy like some women, but my psoriasis completely went away. I read an abstract of a study in which 30 of 35 psoriasis patients who also had the celiac antibody had drastic improvement of their psoriasis symptoms under a gluten-free diet, versus no change in the control group (I forget the numbers) who were psoriasis patients without the antibody. After my pregnancy, though, my psoriasis has gotten a lot worse (usually it's just on my elbows, but now patches appearing everywhere and it's really itchy!!).

Well, I will talk to the pediatrician on Friday and get her advice. She is pretty open-minded. But I think Enterolab is definitely in my future whatever she says.

My little guy actually eats a ton and is a sunny-tempered fellow. His only symptom is failure to thrive and occasional loose stools. But perhaps other health problems might be related too - allergies and asthma.

I've been wondering why an official diagnosis is so important to me. That may be why I've been resisting Enterolab. I don't think I'm a hypochondriac, but I was convinced for a while I had psoriatic arthritis and had blood work done only to find out it was carpal tunnel. But considering 20% of psoriasis patients have psoriatic arthritis and I had the symptoms right at the typical onset period, it doesn't seem too crazy. But my husband is a little suspicious and wants me to stop spending so much time on the internet - he thinks I get myself all worked up. Ultimately, though, he's really supportive, especially if I have research abstracts to back me up. (He's a medical editor, so he's always asking me my sources.)

I just feel like I want the official diagnosis in my corner for future battles, not with my family, really, but maybe with schools and teachers and summer camps... Also, I really do think there are numerous people in my extended family who have it, and I'd love to get them all tested and feeling better (probably a fantasy, but still). Even though intellectually I have a lot of suspicians about the medical establishment, especially in the US where, if you can't put a cure in a pill it ain't worth researching, I still want official validation.

Okay, enough venting. Thanks again!!

[Nic]

I'm still worried about celiac. My son just doesn't eat that much gluten - he's never liked bread products, aside from the occasional noodle (and gluten through breastmilk), so I just don't know if he's been eating enough gluten to test positive anyway.

Hi, I just want to point out that my son has Celiac and I thought he was completely gluten free for just over a year. He still had some symptoms that no one could figure out so the doc ran blood work to make sure there are no gluten antibodies. The test was normal. Come to find out on my own that there was a miscommunication with the Chinese take out place we use. They told me there was no soy sauce in the fried rice and there was. I went in to read the ingredients, wheat was the second one. So my son has been eating a small amount of gluten 2 times a month (thats how often we eat Chinese) for over a year and the test showed no antibodies. My insurance company insists that we use one particular lab as we have a PPO. From what I am gathering, you can't trust every run of the mill lab for good results for this. I don't know why.

This is the same lab who kept returning results to my doc that my other son has a high Calcium level. With all of his developmental problems we ended up on a wild goose chase looking for the cause. They thought William Syndrome, sent me to an Endocrinologist and a Genetisist. Come to find out during a hospital stay for an unrelated problem, his Calcium is normal. Tested it again at the hospital, still normal. But at my lab it is too high. Go figure, I don't trust my lab that well obviously.

Nicole

[queenofhearts]

Something you might want to consider is that Celiac has all sorts of stealth symptoms, & if you go fully gluten-free for a while, you may find relief from symptoms you didn't know you had! I recommend you take a look at the Unexpected Positive thread... you'll see it's not just digestive issues.

Open Original Shared Link

Best to you & your son. I hope you get some answers.

Leah

[betsy7]

My son and husband were both diagnosed recently. It started with a similar situation -- failure to thrive in our 1 year old son.

We did our first celiac disease test on my son through Quest labs at approx. 15 months and it came back equivocal -- not negative -- not positive. Our pediatrician said test again in a year or two. But, we went to a gastro and several weeks later he was tested through Prometheus labs and tested positive. It may have been differences in labs - or it may have been that his celiac disease was just starting to "kick" in... who knows. My husband was tested at the same time, and, much to our surprise, came back positive. My husband's endoscopy results were positive for Celiac, but our son's only showed some markers, but not enough for full diagnosis via endoscopy. I've heard/read that it's often difficult to diagnosis kids under the age of two.

We didn't wait until our son got worse (he was really not growing in height). His doctor at Columbia Pres. in NY believes that he definitely has it -- so we went Gluten free right after his endoscopy. He hasn't gained a significant amount of weight, but has grown approx. 3 inches in three months since starting the diet -- 18 months - 21 months. Normally, children don't grow this much at this age -- they've already done their major spurt. His constant mushy poop went away as well. We're working on his weight gain, but he's picky and very, very active (never stops running around). So, that may take some time.

My advice would be to have both you and your son tested through Prometheus (you may want to run it by your insurance company before to make sure they'll cover it - it's pretty expensive). Prometheus can test not only for celiac disease, but for the genes/genetic markers (not sure which) that are responsible for celiac disease. If the genetic test is negative, then I don't think that you can have it.

Hope this helps.