2 1/2 Year Old Daughter Diagnosed With Celiac Disease (sort Of)

[wmessin]

I would like to get some opinion from this board since nearly everyone has some experience dealing with celiac and/or gluten allergy.

My daughter is 2 1/2 years old. We live in Chattanooga, TN. She's on the smallish side, has never gotten above 23 lbs. which is what she weighs now. she looks thin, but not rail thin. Most people think she's about to turn 2, not three years old when they first see her.

She has quite a history already. About a year and a half ago she began a really fussy stage. Then it evolved to screaming and you could tell something just wasn't right. She looked to be in pain but couldn't yet tell us what was wrong.

My wife and I kept on the pediatrician to figure out what was wrong with her. She seemed to always have gas, and had diahrrea for about 3 months. No poop test ever showed anything. No blood test ever indicated an organ problem.

We got an appointment with a GI specialist in town once she began dropping weight. She had gotten down below 18 lbs. and was completely off the chart at that point. This specialist saw her and wanted to put her on a probiotic and said he wanted to see her back in 6 weeks. I explained to him that I didn't think she could wait that long given her rapid weight loss and continued screaming gassy fits and diahrrea. He repeated that we needed to give it 6 weeks.

We didn't agree with this and found a GI specialist in Knoxville that agreed to see her the next day. After reviewing the history and noting my daughter's weight loss, she immediately hospitalized her in order to run an exhaustive amount of tests, including several scopes, colonoscopy, biopsies, you name it. Every disease was tested. Celiac disease was tested via blood test, panel test, and biopsy. All were negative.

The only definitive finding after all of those tests was the pH probe indicating reflux. The doctor indicated to us that some parasites are sometimes difficult to detect when testing samples and that she wanted to treat her with Alinia.

Let me tell you, Alinia is a wonder drug. Within 3 days she was feeling fine (although scared to death after all of those tests). No more gas, no more diahrrea. Just normal.

Things went well for about a month and then constipation started. She was put on Miralax for that. Then a couple of weeks later the gas and diahrrea came back. After a week or two she was put back on Alinia.

The Alinia again took care of it. We went through this same cycle about 3-4 times over the past year-plus. About a month ago the diahrrea continued again, along with the gas....now with the pain getting very bad for her. The GI doctor during this entire time continued testing with everything, including blood work, coming back negative.

She indicated to us that about 3% of Celiac patients test negative on all current testing practices but still prove to have the disease when placed on a gluten-free diet. She now suspects this to be the case for our daughter. In the meantime, she again went on Alinia and she's gotten better again.

So that's where we are now. We're just now beginning a gluten-free diet for our daughter, which is no small task at 2 1/2 years old. We'll deal with that though.

My question is, given all of this history, we're questioning whether this truly could be a gluten allergy or if there's an environmental problem, perhaps a parasite that just won't go away completely. The reason we question the celiac diagnosis is that Alinia seems to cure her completely of her symptoms for a while. Then a couple of months later it starts all over. But she certainly does get better each and every time with Alinia.

So I ask all of you with experience with things like this, what are your impressions of this situation? My apologies for the length of this story. I just didn't want to leave anything out.

Any feedback would be greatly appreciated. This has been a very scary and bumpy road. And on top of all of that, our poor little girl had to have her tonsils and adenoids removed too!!!

Thanks again,

Wayne

[aorona]

You can always try out the gluten free diet for a month, just to do a test run to see if this makes her any better. If it is not gluten intolerance or celiac disease then I would think that her symptoms would continue to repeat themselves. I am no expert, by my oldest son was diagnosed as celiac after a positive response to the gluten free diet. His blood tests came out negative. There is some research out there, possibly on this website, that blood tests for celiac are not reliable in children under five years old and many times the test can come out negative when they really do have the disease. Things that my kids started off on the gluten free diet were nachos, tacos, apples, hot dogs, ice cream, jello, bananas, cucumbers, just to name a few. My kids were so starved out and picky when we started on the diet, that I basically let them eat whatever they wanted, even if it was nachos and marshmallows all day. Of course, we only let them do this for so long! Good luck.

[Rachel--24]

It certainly cant hurt to try the gluten-free diet with her.

To me it looks like her symptoms are primarily caused by parasites. Kudos to your Dr. for even thinking of it (most do not).

My understanding is that Alinia wont kill off the eggs and so the cycle needs to be repeated several times. My Dr.'s were wanting me on Alinia every 3 weeks during the full moon (this is when parasites are most active).

Alinia is a powerful broad spectrum antiparasitic and so it will do a good job of killing off the parasites...but new ones will continue to hatch from eggs which were left behind. This may be why she continues to have problems and responds well to additional rounds of Alinia.

The other thing is that if she has some underlying condition which is weakening her immune system she may be unable to fight off the parasites on her own...so they continue to be a problem for her. In this case she may also have bacteria overgrowth, yeast or other issues which basically make it difficult for her immune system to keep these

"bugs" in check.

I dont know how often you've had to repeat the treatment but I would continue to treat her during every full moon regardless of whether or not she is having symptoms...for probably up to 6 cycles (at least). If you're treating only when symptoms reappear this most likely means that the eggs have hatched...more eggs are being left behind...and its just an endless cycle until you can get on top of it. Dont wait for the symptoms to come back.

It takes awhile to get rid of parasites and its even more difficult if she has other issues which are putting stress on her immune system.

[Izak's Mom]

Wow - sounds just like an episode of Mystery Diagnosis! I wish I had some key piece of information to offer, but sadly I don't. Seems pretty strange that the Alinia works for awhile, then the symptoms come back..I feel like that's a key piece. Trying the gluten free diet is harmless enough and it would be interesting to see how she does on it. (You have to give it awhile, though). I have a 3 year old (3 this past July) who's been gluten-free since 9 mos. It's not as bad as you think, and in Chattanooga you should have some access to supermarkets that might carry a better selection of gluten-free food. I lived in Murfreesboro for a spell...I think it was Food Lion and Kroger down there? The newer stores should have more items. Also, I swear by Gluten Free Pantry Favorite Sandwich Bread Mix. Get it online via Amazon in 6-packs for a discount - well worth it. Really really easy to make (you don't need a bread maker or anything), and tastes a million times better than any gluten-free bread you'll buy in a store. Good luck with everything, and please keep us posted.

E

[Mtndog]

She sounds a lot like my niece (not blood related to me) who is now 4. When she was 2, she wasn't growing weight-wise, horrible screaming fits, diarrhea. She too tested negative for celiac. Turned out her major problems were horrible reflux (which she outgrew) and lactose intolerance (which she still is).

I STILL suspect celiac for her but her family (she's my sister's oldest) are big Italian pasta, bread etc eaters. She has taken lactose out of her diet which seems to have helped considerably. I keep bugging my sister

You could always try elimination of one major possible allergen/intolerance at a time. Do they know how she may have gotten parasites. Poor baby, hope she feels better soon. :wub:

[Jestgar]

Nitazoxanide also inhibits some viruses and bacteria. One of it's methods is thought to be through inhibition of Pyruvate Oxidoreductases Open Original Shared Link

The after effects could be from some inhibition of the intestinal cells through a related pathway. Cells stop dividing, form stronger cell-cell interactions, no more gluten into the blood stream (but still in the intestine, which can cause diarrhea). Once the Alinia is stopped, cells return to normal, the Miralax clears out the built up cells, her body returns to what it was doing before any treatments.

It could also be destroying a large portion of her normal intestinal flora, which would also lead to constipation.

Trying the gluten-free diet might be tricky, but at least you'll know.

[home-based-mom]

Rachel's advice - as usual is right on. My thoughts when I read your post are the same as they are now. I would try to find out where and how your daughter picked up the parasite. Might you and your wife also have it but your immune systems are dealing with it better than hers is?

I hope she is feeling better soon!

[Darn210]

First of all, let me welcome you to the forum . . . you have found a place full of information and lots of people that are eager to help and offer their opinions.

My own personal experience . . . When my daughter was first diagnosed, I, of course, was looking for some/any other "nonpermenant" diagnosis (parasites being one of them) that it could be instead. Who wants to saddle their child with a life-long diagnosis of Celiac disease which comes with a life-long gluten free diet . . . Oh, yeah, big time denial here. I still followed doctor's orders and put her on a gluten free diet with the intention of proving him wrong later by challenging her. Mind you, even though I wasn't thoroughly convinced myself, I was very strict with her diet. I wasn't going to let my failure to do a good job ruin my ability to prove the doctor wrong. So . . . I didn't even get a chance to challenge her. It happened at school. She had something from the school lunch program that had been gluten free but the vendor changed the product . . . and I was finally convinced.

Now, that's not to say that your daughter doesn't have a reoccurring parasite issue. However, trying the diet will answer the celiac question. I would say the first month is the hardest . . . just because there is so much to learn. It's really not that bad. When I mention it to other people, I get a lot of "sympathy" . . . but we don't need any. . . and I tell them that. I prove it to them by sharing my gluten free goodies/cooking.

Make sure you give the diet a good long try. You may see improvements immediately and some issues may take longer to clear up. My daughter was also diagnosed with gastroparesis (nerve damage in her stomach) at about the same time. The GI thought that it was caused by the celiac disease and would eventually clear up. Although we saw continuous improvement, it did take close to a year before we no longer saw any symptoms of it.

It seems daunting at first . . . but it truly isn't that hard to go gluten free. If you have any questions on products/foods that your daughter loves, let us know and we can provide you with some good alternatives/recipes.

[April in KC]

Welcome, Wayne. I can't say for sure if it's Celiac, but since the gluten-free diet is just as healthy as a regular diet, I think it would be in your interest to try it for a few months. Have you tried shopping at a large health food store yet for a better selection of gluten-free foods? In the better stores, they will have an aisle or two and a freezer case dedicated to gluten-free foods...animal cookies, waffles, pizza crusts, etc. (Of course, you should buy a cheap dedicated toaster and a couple of pans for her stuff...it really can be that sensitive...)

Sorry her diagnosis has been so difficult. Her symptoms could very easily fit Celiac.

Also - you might consider getting the Celiac genetic screening. If she has HLA-DQ2 or HLA-DQ8, it would at least make Celiac Disease seem much more likely. If not, you might be able to focus on other disorders. 95% of North Americans with Celiac Disease have HLA-DQ2. There are others with the same gene who do not have Celiac, but at least it is something to look at. It's something your physician can order, or you can pay about $100 to have the gene test done privately.

My oldest son was 6 when diagnosed with Celiac. His brother was 3 and had many of the same symptoms, but lacked the positive blood tests. We put him on a gluten-free diet, anyway, and had great results.

[April in KC]

A few food ideas...my little ones like Kinnikinnick animal cookies, Rice Chex cereal, Dora the Explorer Cereal, fresh fruit, applesauce, meats, Kinnikinnick pizza crusts (which can be microwaved for an easy meal), Hormel "Natural Choice" lunch meats (which are labeled gluten free). Tinkyada gluten free pasta is good. I add olive oil to gluten free toast for more calories. Avacadoes are great for fats if she will eat them (my kids won't). Most GI docs recommend initial 6 weeks dairy free as well as gluten free until the villi are healed, but once dairy is okay, then you can add in some dairy treats like cheese, yogurt, and Kozy Shack puddings (also labeled gluten free). You can use Almond milk as a sub for regular milk in the meantime.

Our youngest son had multiple food intolerances in addition to gluten. In his case, a special formula called Neocate is what was required to help him turn the corner. It's expensive and doesn't taste good, but my understanding is they make a "splash" formula for older kids that's a bit more palatable. It's not something I recommend if she respond to gluten free, but it's something to check into if she is still suffering and losing weight down the road. It's all predigested, and contains no whole food proteins for the immune system to react to.

[Mtndog]

Sorry her diagnosis has been so difficult. Her symptoms could very easily fit Celiac.

Also - you might consider getting the Celiac genetic screening. If she has HLA-DQ2 or HLA-DQ8, it would at least make Celiac Disease seem much more likely. If not, you might be able to focus on other disorders. 95% of North Americans with Celiac Disease have HLA-DQ2. There are others with the same gene who do not have Celiac, but at least it is something to look at. It's something your physician can order, or you can pay about $100 to have the gene test done privately.

Because my bloodwork was "borderline" and my biopsy negative, this is how my doc diagnosed me. I have HLA DQ8 and a very strong reaction to gluten. That was enough for her.

There are so many good gluten-free options (as well as foods that are naturally gluten-free)

out there, it's worth a try!

[wmessin]

Thanks to everyone for some very thoughtful responses.

I guess it does make the most sense to stop questioning things, trust the GI and just test the diet and see what happens. I do wonder why there's been no mention of dairy related problems from the pediatric GI though. Judging from the posts on here that seems to be rather typical. I'll ask about that when we follow up in about a month with the doctor.

As far as the genetic testing goes, that also was done on my daughter with a negative result. They've seemingly done every testing with none of it testing positive.

We found a grocery store around downtown called Greenlife that has numerous items clearly marked gluten free. It's all very expensive but at least we know where to look. And I'm also quickly altering my methods of cooking. It's been difficult since my background is mainly italian and new orleans cooking (I'm a new orleans native). But we're changing and trying to make family meals that are gluten free. So far so good.

My daughter was already incredibly picky so that's making things more difficult. But we're trying to stick with it. I'll post an update after we give the diet a chance for a while. In the meantime wish us luck....and for personal reasons keep my family in your thoughts. They are evacuating New Orleans right now and heading up my way.

Thanks again everyone. All information is greatly appreciated.

Wayne

[Darn210]

Wayne,

Check out the Tinkyada (brown rice) pasta . . . comes in lots of shapes . . . and it's great . . . absolutely no complaints from the gluten eaters . . .

Good wishes for your family and everyone else under evacuation orders.

[Rachel--24]

Its unlikely that she would have Celiac without having the genes and with all tests coming back negative....however, this does not mean that she doesnt have a problem with gluten.

She may definately have an intolerance to gluten, or dairy, or soy...they can also be attributed to her possibly having a parasite problem.

Parasites do cause gut inflammation and do tend to cause food intolerances. Gluten and dairy are the biggest problems when the gut is damaged or when digestion becomes impaired.

Good luck with the diet and I will keep your family in my thoughts with regards to the evacuations.

[wmessin]

a quick update on my daughter Ashley's condition.

two days ago she started with some pretty bad stomach cramping and has a slight case of diahrrea again. Normally we never see this so soon after the doses of Alinia. The cramping is keeping her up at night.

Man oh man.....I despise these stomach problems that she's having with no one seemingly able to pinpoint. She's been on the gluten-free diet for a good week now.

We go back to the GI doctor in about a month. If this cramping keeps up we won't be able to wait that long.

[wmessin]

One more note, or actually a question....

The only other thing different that we're doing is that the GI doctor has her taking Flora Q probiotic. We started that just before the cramping started. Is there any chance this could be causing her problems? We sprinkle one capsule on her breakfast food each day.

[jerseyangel]

One more note, or actually a question....

The only other thing different that we're doing is that the GI doctor has her taking Flora Q probiotic. We started that just before the cramping started. Is there any chance this could be causing her problems? We sprinkle one capsule on her breakfast food each day.

It could--I have yet to find a probiotic I can tolerate. I would stop the probiotic and see if she feels better--you should know pretty quickly.