Pros And Cons Of Testing

[devell]

hi, All I've been reading through recent threads and enjoying all the learning. My daughter has not been diagnosed because we're hesitant to have her tested -- she'll be four in November (part of our concern is her age and what we've heard of inaccurate results); we also were told by two different insurance companies that they would not cover her if she was officially tested.

We have her on a gluten-free and lactose-free diet. We discovered her sensivity/allergy when she was 18 months old and her growth 'curve' had gone from 50% down to 1% in nine months. She also broke her leg, which is rare in small children. WE started with removing gluten from her diet but didn't see huge results -- when we also cut out milk (we actually use Lactaid milk), there was enormous improvement. She had the typical pot belly and skinny limbs, and she's had diarrhea from day one. Now, two years later, her diarrhea is much less (maybe once a month rather than daily), and her belly looks more normal. Also her mood is completely changed -- she used to cry and whine all the time (and seldom slept); now she's a very happy, teasing, mischievous child who usually sleeps through the night. So we think there's definitely an allergy present -- we just aren't sure if we need to test. Do any of you more experienced types have opinions? Thanks!

[Guest j_mommy]

As an adult I wanted to know....my parents never questioned what was wrong with me as a child and young adult(There may not have been much they could have done all those years ago anyway). But you have a positive dietary response with your child!!!! Which is a diagnosis in and of it self!

Also....to be tested she would need to go back on gluten for a period of time for the tests to be true!!! Do you want to go through that????(Note it was important to me to have an offical diagnosis)

If you choose to do testing you could go through entrolab, if insurance is a problem.

Good Luck with whatever you choose!!!!

[EBsMom]

....we just aren't sure if we need to test.

That really is a tough question! My dd was gluten free before we realized what the testing process was all about. I was so thrilled to see her feeling better that I said "NO WAY" to putting her back on gluten to pursue an official celiac disease diagnosis. She had an overwhelmingly positive dietary response to eliminating gluten, and later, dairy, and she continues to improve now, 3 months later. We did have her tested through Enterolab, and that confirmed what the dietary response had already shown us - she has a problem with gluten and casein. If I could go back and do things over, I'm truly not sure what I'd do. On one hand, I think it would be great to have a formal diagnosis, so that dd would never have any question in her mind about the need for the diet. Of course, pursuing a diagnosis and actually *getting* one are two different things. We could have gone throught the blood tests and the biopsy, only to be told "No celiac disease." (It happened to a friend of mine, and it's happened to plenty of people on this list.) Also, dd was able to get on with her life....her energy level was dropping by the day, to the point that she could barely get through a 2 hour gymnastics practice. She actually did a gymnastics camp this summer (after being gluten-free for 1 1/2 months) and made it through 4 1/2 hour practices, 4 times a week....there's NO WAY she'd have been able to do that while still eating gluten and deteriorating the way she was. But, someday the decision not to pursue formal testing might bite us - or more likely, her - right on the you-know-what! I'm fully aware of that. The only advice I can give is to give it some deep thought, make a list of the pros and cons....and then go from there. No one has to give you permission to keep your dd on the diet, thank goodness!

Good luck to you!

Rho

[devell]

Thank you both for responding! The only reason we continue to wonder about testing is simply to know how serious her allergy is. We'd be surprised if she's actually positive for Celiac as no one else in the family has it. In fact, although my mom has some carb issues (and mild fibro myalgia), my daughter is the only one with food allergies on either side. I thought I heard somewhere that Celiac usually has to come from both parents -- is that correct?

anyway, I appreciate hearing both sides. Diet has much a huge improvement, but we're pretty sure she's still getting some gluten here and there -- OR, after reading many of these threads, perhaps it's the casein. Her diarrhea hasn't totally disappeared, and she still gets the pot belly and complains of a tummy ache from time to time (on a weekly basis, though usually she just has to use the bathroom and she'll feel better). Is the only milk-type drink other than soy that's gluten-free the rice or almond milk? She's not a big fan, unfortunately.

[Nic]

Thank you both for responding! The only reason we continue to wonder about testing is simply to know how serious her allergy is. We'd be surprised if she's actually positive for Celiac as no one else in the family has it. In fact, although my mom has some carb issues (and mild fibro myalgia), my daughter is the only one with food allergies on either side. I thought I heard somewhere that Celiac usually has to come from both parents -- is that correct?

anyway, I appreciate hearing both sides. Diet has much a huge improvement, but we're pretty sure she's still getting some gluten here and there -- OR, after reading many of these threads, perhaps it's the casein. Her diarrhea hasn't totally disappeared, and she still gets the pot belly and complains of a tummy ache from time to time (on a weekly basis, though usually she just has to use the bathroom and she'll feel better). Is the only milk-type drink other than soy that's gluten-free the rice or almond milk? She's not a big fan, unfortunately.

Hi, Celiac DOES NOT have to come from both parents. You only have to have 1 gene, coming from 1 parent, to have it. Some people do get blessed with 2 though. And the parent does not have to have disease too, my son has it and we do not. I assume I am the one carrying the gene because my father has the disease too as well as my aunt and then some distant cousins. With a disease like this your really can't truly say there is no history of it because so many people go undiagnosed or don't relate their symptoms to food. Did she improve at all after you made her gluten free or only after you removed the lactose? Since she still has some symptoms I would remove milk all together and start from there. And that would mean all milk, even to cook with. My son didn't like the soy or rice milk either at first. Now he drinks the rice milk, which I turn into chocolate milk, at every meal. He uses it plain in his cereal and I cook with it in place of milk and everything comes out either the same or pretty close to it. We did get a positive diagnosis on the Celiac because I really wanted to be sure and I wanted to have a leg to stand on when getting the schools to cooperate with me. But that is a personal choice. AS far as the insurance companies are concerned, if she is diagnosed while being insured, I don't think they can drop her. Also, I have a pre-existing condition (unrelated to Celiac) and whenever I needed new insurance they always gave it to me but for the first maybe 6 months they won't cover anything related to the pre-existing condition. But, I never had to get insurance on my own, I always got it through a job, so I don't know how it would have gone otherwise.

Nicole

[Guest j_mommy]

Also just wanted to note that Celiac is not a food Allergy!!!

[ENF]

........Is the only milk-type drink other than soy that's gluten-free the rice or almond milk?

We use DariFree, a healthy milk alternative which is made from potatoes.

[Dianne W.]

Her diarrhea hasn't totally disappeared, and she still gets the pot belly and complains of a tummy ache from time to time (on a weekly basis, though usually she just has to use the bathroom and she'll feel better).

My daughter (no food / gluten issues) will also be four in November. She sometimes is too busy playing and will start complaining of a tummy ache. I remind her to go to the bathroom which 99.9% of the time solves the issue.

Thought I'd mention it - agreeing with you that the "full bladder = tummy ache" issue might just be a "too busy to stop and go to the bathroom" thing rather than a gluten thing.

I also was going to mention Vance's DariFree potato milk as a dairy/soy/rice/almond milk alternative.

[devell]

More good things to consider -- thanks! I knew Celiac isn't a food allergy, btw -- poor choice of words on my part

I've wondered if she just isn't relieving herself often enough, and part of the whole testing pros is that we'd then know what was going on instead of continuing to guess. Thank you all so much for your thoughts -- it'll help us decide what's best for us, I know!

[Juliet]

"In fact, although my mom has some carb issues (and mild fibro myalgia), my daughter is the only one with food allergies on either side."

So you know, fibromyalgia can be a symptom of Celiac Disease. A woman who runs the Celiac support group in our area used to also run a fibromyalgia support group before being diagnosed with Celiac Disease. According to her, a very high percentage of people with fibromyalgia (I vaguely remember it being more than 10% of the people with this disease, but don't quote me on this) actually have Celiac Disease instead and the symptoms show up as fatigue, random pain in specific joints, sleeplessness, just like fibromyalgia. With her carb issues and fibromyalgia, your mother may want to do a full spectrum blood screening.

[devell]

That's interesting to hear, Juliet. I've wondered about my mom's sensitivity to gluten since we learned of my daughter's problems...but when I bring it up, my mom isn't interested But my husband has been nervous about the testing because he thinks there's a good chance that my mom is actually either gluten intolerant or has Celiac, which means there's an even stronger chance that our daughter is -- which leads us back to the insurance problems. We're okay with our current insurance, although they're not the best (or the most affordable), and we've talked about changing, but that's where the testing comes in. We'd have to change first with no indications of any problems on DD's part...and then do the testing at a later date.

Yeah, we're still trying to figure it all out!

[happygirl]

Your child would need to be eating gluten for an extended period of time for the tests to be accurate. If she is doing well on the gluten-free diet, I would consider that diagnostic. Anytime I wonder if I still react, I remember the last time I was glutened, and I know its not worth it to go back on it.

[mftnchn]

Just a note, with Enterolab, you have to have been eating gluten in the past year. If it is longer than one year, I don't think it can pick up gluten sensitivity. From diet you already know she is gluten sensitive, so I don't know what that would gain you. You can check genes.

[Nic]

That's interesting to hear, Juliet. I've wondered about my mom's sensitivity to gluten since we learned of my daughter's problems...but when I bring it up, my mom isn't interested But my husband has been nervous about the testing because he thinks there's a good chance that my mom is actually either gluten intolerant or has Celiac, which means there's an even stronger chance that our daughter is -- which leads us back to the insurance problems. We're okay with our current insurance, although they're not the best (or the most affordable), and we've talked about changing, but that's where the testing comes in. We'd have to change first with no indications of any problems on DD's part...and then do the testing at a later date.

Yeah, we're still trying to figure it all out!

Has anyone on this forum ever had trouble getting insurance due to Celiac Disease? I have heard it brought up several times in different thread and it is something I had never thought of. I know with my own pre-existing condition which is a cancer causing illness, I never had any trouble. Just curious what my son may be up against.

[happygirl]

private insurance is one thing, and I can't offer any advice there.

if you have insurance through your employer, its group insurance, and generally, the only qualification is that you pay. I've been on three insurances (some my own, some my husband's)....two private sector companies that offered their employees health care plans, and the federal gov't which offers health care plans. In instances like those, it won't affect if you can "get" insurance or not.

The only possible issue in those instances is if you had a period of time (I think its 63 days or more?) that you didn't have coverage....then, they might add a clause that says "you have to wait X number of days before we treat that condition that occurred during that time." It all depends on your policy...some have pre-existing condition/lack of insurance clauses, others don't.

[devell]

We have private insurance, and although we can keep our current company regardless of testing, if we wanted to change, she wouldn't be covered. But I have heard from friends that insurance through business/work is different.

I do not want to put her back on gluten, so that's pretty much the decider for me. However, I was reading on a few other threads about the stool test -- it doesn't sound like she'd have to be eating gluten in order for that to be accurate -- has anyone had experience with it after being gluten-free for a long period of time?

[taweavmo3]

I have four children, one who is formally diagnosed, and three who are on the diet w/out a positive test. The biggest challenge was putting my 8 year old on the diet without a positive test. He had eaten gluten, and was not keen on giving it up. He agreed to give the gluten free diet over summer, and he realized he felt better. He did cheat a few times, and suffered the consequences. Once I put the diet in his control, and we talked about how his body felt after he ate gluten, cheating hasn't really been an issue since then. This may not be the case when he is a teenager.....but I feel like I've at least given him the knowledge and power to take control of his health one day.

With my daughter.....once she was diagnosed with Celiac, we were pretty much on our own anyway. We had two follow up blood tests to make sure her Ttg levels were down, and that was it. So I really didn't see the point in getting a formal diagnosis in my other children.....I tried the diet with them, and they responded. When they were still having occasional diarrhea, I took out all casein, and that resolved as well. Our current pediatrician hasn't had a problem with me putting them all on the diet, he actually was kind enough to say I probably knew more than him when it came to special diets, and the kids seem incredibly healthy (not even one sick visit this year!).

If your daughter is still having some loose stools, I would take out all dairy if you haven't already. If that hasn't worked, I would try soy next. I was really hesitant to take out soy, since it is in so many things as well.....but it has worked for us.

My kids like almond milk, but there is also Hemp milk that is starting to show up on store shelves. I'm the really picky one when it comes to milk replacements, and I LOVE this stuff. Plus, it is loaded with calcium and Omega 3 & 6.

I say if you see results now, just stick with it. Especially at such a critically important developmental age.....she's meeting many important milestones, and that's hard to do if she's sick all the time. Just ask us.....we are three years into speech therapy, lol!!!! You can always do a gluten challenge later on when she is a bit older and can express to you how she's feeling. That's my 2 cents anyway! Good luck with whatever you decide, it is a really personal decision that is not made lightly. Take care.