Could It Be Celiac Disease?

[Becky6]

Hello! I am new here and I am hoping you might be able to help me! My daguhter Belle is 3 1/2 years old. She has never had a formed stool once yet! She had a lot of trouble as a baby with explosive bm's, fussy, lots of gas,exczema and was anemic. It just never went away. Then as a toddler it seemed to get worse. Fast forward to this summer when she was having 10 explosive bms a day. They would smell badly, were liquid and would run down her legs and into her shoes! She also got the worst dipaer rash with sores! We went to her ped, then to a GI. The gi thought celiacs, milk allergy or lactose intolerance. They ran blood tests for all the common allergens and celiacs. It all came back fine. They did not do a stool test though. Then we went to an allergist and they did the common allergen skin testing. All came back fine. They said she is lactose intolerant and said completly remove dairy from her diet. We did and that helped alot! However, she still has 2 really bad diapers a day, constant rashes with open sores, sleeps way more than some one her age and has constant sinus infections that medications don't help. I am wondering if it could be gluten. Would those tests have told us for sure that she couldn't have that problem? She eats a lot of foods with gluten in it. But she also eats several Gluten-free Casein-free products cause it is the only thing I can find in that product w/o milk. She gets horrible gas and stomach aches and her legs ache so bad she cries at night in her sleep! She can't potty train because of all this and she is 4! I am wondering if I should just take gluten out of her diet and see what happens? Could it be gluten and lactose intolerance? MAny people in my family are LI. Please help!! So, what do you think??

Thanks!

Becky

[Jnkmnky]

Young children don't usually show up positive on the Celiac tests. Please forget everything your drz have been telling you. Research Celiac disease on your own. Here at Celiac.com is a good place to start. If a person has celiac disease, the villi in the intestine atrophy to the point of no longer producing lactase enzymes...making the person lactose intolerant. It may take 6-9 months for your daughter's villi to grow back. My opinion, from my experiences... Go 100% gluten free right now. No cheating. You will not see improvement in a celiac unless you are 100% gluten free...cannot emphasize this point enough to a person new to the world of celiac disease. She is young. You should see dramatic improvement in her quickly. She will also need her own condiments--- cross contamination in the form of a *CRUMB* is enough to give her symptoms. She will need her own collandar, her own cutting board, her own mayo, pb, and do not use teflon to cook her food. Gluten can get trapped in teflon. Doesn't cook out. Check her shampoo, lotions, powders. NO OATS. Go dairy free for a few months. Allow her villi to heal. Check around this site for great foods your daughter can eat. Here is our favorite bread site.

Open Original Shared Link

Call all the 1-800 numbers on your foods. Use a sharpie marker to mark cans etc until you memorize what's gluten free and what's not.

https://www.celiac.com/st_prod.html?p_prodi...-01105354351.f0

here is a link to the "safe foods" for a celiac...

Here is the link to the "forbidden foods"...

https://www.celiac.com/st_prod.html?p_prodi...-57105354351.09

My son had leg pain prior to dx. It was severe. Gluten free cleared up the joint and muscle pain right away. It was a great relief to see my child healthy. Even if this diet sounds crazy and you can't believe you may have to actually do this for real.... *I've been there, so I know about the disbelief! * You can do this diet once you see how much of a turn-around your child makes. It's nothing short of a miracle. That's enough to keep any mama going!

[RiceGuy]

Gluten intolerance does certainly sound like a possibility. Just remember that Celiac disease results from the intolerance, so not having the disease doesn't rule out the cause. It is FAR better to catch this early, than to take the "wait and see" approach. Since trying a gluten-free diet is safe, and doesn't require a doctor's permission or monitoring, I'd definitely recommend giving it a shot.

Also consider other possible culprits like soy. Lactose and casein are two different things, but hopefully you already have a good handle on those. Refined sugars can also be a problem, but it sounds like gluten or wheat is more likely at this point.

[cornbread]

Becky, that sounds VERY much like celiac disease! What have the doctors said? If I were you, I would do the following:

1. Order the gluten sensitivity stool test (complete panel, plus gene test) from www.enterolab.com

2. Remove gluten from your daughter's diet and see what happens (it has to be 100% removed though, not just 'less' gluten)

The stool test will show up in a few days, and you will get the results back within 3 weeks. Those results will tell you all you need to know and by that time she will have been gluten-free for a couple of weeks so you will have a dietary test to back up the results.

Good luck and please let us know what happens.

[RiceGuy]

Thank you Jnkmnky for an excellent "Celiac 101 crash course"!

I could not have said it better.

[Jnkmnky]

Gluten intolerance does certainly sound like a possibility. Just remember that Celiac disease results from the intolerance, so not having the disease doesn't rule out the cause. It is FAR better to catch this early, than to take the "wait and see" approach. Since trying a gluten-free diet is safe, and doesn't require a doctor's permission or monitoring, I'd definitely recommend giving it a shot.

Also consider other possible culprits like soy. Lactose and casein are two different things, but hopefully you already have a good handle on those. Refined sugars can also be a problem, but it sounds like gluten or wheat is more likely at this point.

Are you talking about gluten sensitivity? I've read your posts b4 and get a little confused by your explanations.... PROBABLY ME.. Not saying you're a confusing person...I'm most likely the confused one! Dangerous grains authors discuss the spectrum of gluten sensitivity leading to Celiac Disease. Is this what you're talking about? Thanks.

Thank you Jnkmnky for an excellent "Celiac 101 crash course"!

I could not have said it better.

HAHAHA! You posted that ^^^ while I was telling you I was confused! Too funny!

[Becky6]

Thanks for your responses! I have been thinking of trying a gluten free diet for her for a month or so now and I just wasn't sure. Then with talking to a coworker she said I am sure that is what it is that sounds just like me! So, I will start her on one this weekend. She already eats alot of gluten free stuff and soy stuff so it wont be too hard to switch her over. I love kinnikinik too! She gets the donuts and muffins since they are dairy free and she loves that kinda stuff! I just hope this helps! People think I am nuts and say the tests came back fine it is nothing! Well, this is not normal for her! So I hope this helps! again thanks and I will keep you updated!

Oh, does she need to stay away from casein too? At this point I am just not letting her have milk, whey or other things that say milk.

Thanks!

Becky

[Jnkmnky]

Thanks for your responses! I have been thinking of trying a gluten free diet for her for a month or so now and I just wasn't sure. Then with talking to a coworker she said I am sure that is what it is that sounds just like me! So, I will start her on one this weekend. She already eats alot of gluten free stuff and soy stuff so it wont be too hard to switch her over. I love kinnikinik too! She gets the donuts and muffins since they are dairy free and she loves that kinda stuff! I just hope this helps! People think I am nuts and say the tests came back fine it is nothing! Well, this is not normal for her! So I hope this helps! again thanks and I will keep you updated!

Oh, does she need to stay away from casein too? At this point I am just not letting her have milk, whey or other things that say milk.

Thanks!

Becky

I did dairy free for my son at the beg. of the diet. I used oil or Pam at first...added in butter around the third month and he tolerated it. I used Lactaid milk for him for 9 months. When I tested his villi at 6 months, he had terrible stomach cramps and D. I didn't care about whey or Casein. I also wasn't as "in the know" as I am now. I'd go ahead and do the whole thing...dairy free-gluten free-whey free-casein free.... If you can manage it... WHY NOT? Also, I'd like to say that soy is not a miracle food. It is bad for your body. Run from soy like it's rat poison because that's what it is. I know, I know... I sound nuts But I'm not. Soy is bad.

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Have fun watching your child get better!

[RiceGuy]

Are you talking about gluten sensitivity? I've read your posts b4 and get a little confused by your explanations.... PROBABLY ME.. Not saying you're a confusing person...I'm most likely the confused one! Dangerous grains authors discuss the spectrum of gluten sensitivity leading to Celiac Disease. Is this what you're talking about? Thanks.

HAHAHA! You posted that ^^^ while I was telling you I was confused! Too funny!

Well, all the information I've read basically boils down something like this:

Gluten intolerance is characterized by the immune system responding to the presents of gluten. Celiac Disease is the damage caused by the immune response over time, destroying the small intestine, leading to a host of other health issues due to malabsorption and the leaky gut, etc.

The sensitivity is the same thing as the intolerance as I understand it. So it's a bit like when a person is allergic to cats or something. When there aren't any cats around, the person can feel fine. But they still have the allergy, and the presents of any cats would cause a problem. If they see a doctor about it when they feel fine (and of course any good medical facility is animal-free), there wouldn't be any tell-tail signs of a problem. This is why gluten intolerance is hard to detect, as they typically rely on symptoms. If you catch it early, before damage is done, that evidence won't exist either. Every time I went to a doctor about my health problems, they were clueless. If a blood test was done, it was always the same story. They'd say my white blood cell count was high, so I must have a virus. Of course, the recommendation was antibiotics. That only made things worse, killing off good bacteria in the gut, allowing yeast and whatnot to proliferate.

I hope this helps clear things up. I certainly don't want to add to the confusion. If I'm incorrect about anything, I'm sure someone will point it out.

[Guest nini]

to me this def. sounds like gluten could be the culprit. My daughter's tests came back negative or inconclusive for it too, but with her pediatricians support (NOT PERMISSION) I put her on the gluten free diet. within DAYS I had a different child! I used to feel so bad for her that she never had a formed stool, had explosive diarrhea and would have such horrible rashes on her bottom that she was constantly in pain. She was 3 then. She is now 5 and is a very healthy child. The Dr.s can't believe it. She doesn't even get the typical kid sicknesses that go through the schools. The last time she went to the Dr. was for her 5 year well check up, and before that it was her 4 year well check up... she just doesn't get sick anymore! (knock wood!!!!)

Her Dr.s had to accept that gluten was the culprit but they won't go as far as to SAY it's Celiac. (one said to me, well we "know" it's Celiac so why put it in her records???

[katerinvon]

Thanks for your responses! I have been thinking of trying a gluten free diet for her for a month or so now and I just wasn't sure. Then with talking to a coworker she said I am sure that is what it is that sounds just like me! So, I will start her on one this weekend. She already eats alot of gluten free stuff and soy stuff so it wont be too hard to switch her over. I love kinnikinik too! She gets the donuts and muffins since they are dairy free and she loves that kinda stuff! I just hope this helps! People think I am nuts and say the tests came back fine it is nothing! Well, this is not normal for her! So I hope this helps! again thanks and I will keep you updated!

Oh, does she need to stay away from casein too? At this point I am just not letting her have milk, whey or other things that say milk.

Thanks!

Becky

One thing we can all remember, diet does not require a prescription. My daughter has no diagnosis either, but the diet works, so we keep using it.

I would like to echo the caution on soy. The estrogen-like properties may be helpfull (?) for post menopausal women, but they arn't so good for developing girls and premenopausal women.

Karen

[taweavmo3]

Definately seems like it could be celiac disease, she sounds just like my little girl. She is nearly four, and potty trained within three months of going on the diet. It took up until just recently to get her completely trained, but it's finally done! It was impossible to train her while she was still sick.

There is also the chance of a speech or developmental delay, as well as learning disabilities associated with celiac disease, so the sooner you try the diet, the better. Not all kids have this of course, and your daughter may be just fine in these areas. But docs readily prescribe the wait and see approach, not realizing the neuro damage celiac disease can do to a developing brain. Most will say the kids will "catch up", which just doesn't happen without ALOT of therapy and hard, hard work.

So, definately try the diet and see how she does! I have my 18 month old gluten-free w/out a test result. He was also lactose intolerant. Any dairy gives him diarrhea and a bad yeasty diaper rash (bleeding, very painful), so that was enough info for me!

Good luck......I hope your little girl starts to improve!