Appetite Picks Up After gluten-free Diet Change?

[guessa1]

Well I just wanted to get some advice on this and everyone here is soooo knowledgeable! I just feel so blessed to have found this forum!

My daughter is almost 22 months, and almost 18lbs. Diagnosed as failure to thrive with no real explanation. We've been to an endocrinologist and had bloodwork done. Pediatrician has mentioned celiac disease about 3 times, but always in the context of "I just don't think it's celiac...." so thus far she has not been tested, but a few wks ago I just felt that something was still not right.

She has had very little to no appetite, no interest in food, gags sometimes while eating, odd stools- sometimes constipated to watery diarrhea to a more solid mush..., pale skin...not just fair complexion, but almost a sallow, yellow. Belly sometimes bloats, but not huge...and she is just so tiny, very clingy to me (mommy).

So suspecting celiac, I have put her on a gluten free diet (started on 2/6/08) so it will be 2 wks on Wednesday since starting this.

My 2 questions are:

1. Do I have her tested? (I've read back and forth pros and cons and how testing under the age of 6 may not be reliable- what do you all suggest?) Oh and yes, I know she needs to go back on gluten before we have her tested, if that's what we do.

2. Did your children's appetites pick up after going gluten free? And if so, how long after? (sorry... that was 3 questions total!) My daughter, I mean has literally picked up her appetite like 75% starting about a week into the gluten-free diet...and I've been keeping a food journal on her, so I know I'm not just imagining it.

Does the body know that this food is gluten-free and encourages her to eat it? It sounds crazy, but it almost seems like she knows somehow that this food might be safe for her to eat!?

Thank you so much for your answers and insights! For awhile our doctor just thought she had silent acid reflux and put her on prevacid (which has made no change over the last 5 months in her appetite). I'm just literally floored....because she's been eating in one meal more than she used to eat in a day or two.

Angela

[NewGFMom]

You've got nothing to loose by making them do the celiac panel. It's very accurate when it's positive. It's one blood test and if you get it done ASAP, you won't have to put her back on gluten to do it. Your primary care doctor can order it. If it's positive, that plus her response to the diet will tell you what you need to know.

My son's appetite tripled after we pulled the gluten. We had to start buying more food! They will start eating more when they feel better. And if the gluten was making them sick, they'll eat more when they feel better.

For what it's worth, your child's symptoms do sound a lot like celiac. A lot of doctors don't understand how freaking common this disease is. There's no reason why a child with GI problems should not get the ELISA panel (4 celiac related blood tests). It should be a no brainer.

Best of luck and welcome!

-Margaret

[dandelionmom]

As for testing, I'm glad we have a formal diagnosis for my daughter. It makes the school and family more cooperative and this way I don't have to wonder if it was something else.

And my daughter did have an increase in appetite, starting about a week into the diet. I think she just felt better; who wants to eat when they feel yucky! We've been gluten-free since July and it still amazes me to watch her eat! Today she tried and enjoyed two new things at dinner and I couldn't believe it!

[CeliacMom2008]

My son's appetite went through the roof. He literally cannot eat enough during his school lunch period sometimes! Where he used to eat a bowl of cereal for breakfast, he now eats cereal PLUS an omlette! I personally think my son's stomach/body has been talking to him his whole life. He never liked breaded anything - chicken nuggets, shrimp, etc. He wouldn't eat buns or sandwiches. We kept trying and trying to get him to eat these kinds of things just for the sake of ease (a sandwich in the lunch used to sound so easy!). It's made dealing with Celiac a little easier, but of course we had finally convinced him PB&J sandwiches, chicken mcnuggets, and such were good! Anyway, I really do think his body didn't want gluten. He still isn't a huge cookie or cake fan, but he likes the gluten free varieties more than their wheat counterparts. But I believe he's had celiac disease for his entire 8 years of life, so he isn't like others who enjoyed wheat foods and then developed celiac disease.

[jplain]

Glad you posted this ~ I was just coming to look for the topic of appetite increase.

On a hunch, I put my 24 month old egg-, dairy-, and soy-intolerant daughter on a gluten-free diet a week ago. The change has been remarkable. Now she can't stop eating...or pooping. But at least it is much nicer poop than before going gluten-free.

At this point we don't plan to get her officially tested. I'm comfortable making this decision without antibody testing, especially considering the very high rate of false negatives in young children. A biopsy is out of the question ~ I personally feel it is too invasive for such a young child and too often inconclusive.

I also have concerns about how the current U.S. health insurance industry treats those with pre-existing conditions. Perhaps I'm being over-cautious, but having experienced job instability in the past year, this is where my comfort level is right now. If an official diagnosis would mean access to pharmacologic or other treatment modalities, it would be a whole 'nother story. However, since the therapy is dietary, I don't feel we need medical approval to trust the changes we see in her diapers and behavior.

But everyone is different. If it would put your mind at ease to have an official diagnosis, go for it! Before you do, think through how you'll handle it if the test results are negative.

I probably will order Enterolabs gene testing for both my kids and myself though, just for our personal information. It might help us decide whether or not all of us should also be on a gluten-free diet. I realize that since the allele frequencies are so high, it is unlikely that she'll end up having zero celiac or gluten-intolerance alleles. I figure that saying she carries one or more alleles should be enough to silence any pesky skeptics.

Good luck!

[guessa1]

Thank you for all your replies. I called my daughter's pediatrician this morning and we are going in for a consult on Thursday to discuss it. I let them know that she had already started a gluten-free diet and asked how long she should go back on gluten if we decided to test. The nurse said "a week". Does that sound right? Who knows how long is long enough?

I mean at this point, even if the results came back negative I would keep her on a gluten-free diet, b/c the change thus far has been really dramatic. (Last night I almost cried, b/c I had NEVER seen her eat so much at dinner). I can't imagine doing the biopsy on her....it's going to be hard enough to get blood from her again (she's already been through that several times, so she knows what's going to happen, poor baby).

My husband really wants to know definitively. I don't know if it's enough for him to just see a change from the gluten-free diet.

Are there special questions i should ask my pediatrician about the testing?

The nurse made it sound like it was just a panel of bloodwork that would be done.

[Worriedtodeath]

We're going thru this with our 20 month old. She is tiny, just hit 18 lbs and we have been put through the ringer since her 12 month well check when it was obvious that her growth was way down. She is right now slightly bigger than at 9 months. Here's our story in a nut shell and I would ask that your husband read this as my husband wanted that definite answer as well. And we went thru everything to get it and still have no answer!!!!!!!

At her 12 month visit - weight and growth slightly above her 9 month visit way off for her. Did two or 3 months of weight/height checks to see if a growth spurt would occur.

Took her off of everything but veggies and fruit and she grew a little. We then pursued allergy testing as I thought it was related to food. Allergy testing came back neg. Allergists started food trials since everyone realized her problems centered around introduction of wheat and wheat based products. Did egg trial, dairy trial and then reintroduced wheat

2 weeks into it, gi problems began. 2 months into multiple poops a day, 3 months into it liquid poop multiple times a day, gi consult was done and biopsy scheduled for when she was on wheat 100 DAYS!!! At this age, they can heal themselves well enough to skew the test in just weeks. And it takes months and months of eating gluten to do enough damage to show up especially in little kids who haven't been eating a lot and barely eat enough to feed a bird as it is.

Tests come back - blood is still negative, biopsy is NEGATIVE except for lactase deficiency, which occurred 3 months into the wheat trial so we know some type of damage is going on.

NOW during this time, my daughter became a screaming little tyke who couldn't sleep thru the night, was losing weight, pale, dark circles under the eyes, extremely tiny, frail like a bird, obviously in pain of some sort, didn't speak or babble at all!! never smiled, never went to anyone but me, refused to let anyone touch her or handle her. Every day she became a little bit worse. Her skin was like sandpaper and flaked off and hurt to touch it because it was so rough. She went into screaming fits and attacked anyone near her and bit anything that stood still. She was a nightmare! I was living a nightmare!

The gi dr was CONVINCED she had Celiac disease. CONVINCED enough to tell us all about living gluten free and we made plans to do so as soon as the biopsy was done. We did. Poops slowed down to about 2-3 a day, she calmed down, and wasn't so unmanageable or frightful. A week later, they called and told us to put her back on wheat as the test was negative and a whole bunch of other things and her real problem was lactose. Take that out of her diet and she would be fine in 2 weeks. We did that. 5 days into they reverted and took her off of wheat since she started pooping 8 or 9 times a day and lost almost 12 ounces.

Now we have been gluten free/casein free for 1 month. She has gained over a pound, is babbling non stop, saying words that anyone can understand, responding to people, smiling!!!, does not thru tantrums, is nice, and overall is happy, happy little girl and a joy to be around.

We have no dx. We have no explanation for her FTT and no reason to explain why she is now gaining weight. Our gi isn't enlightened enough to consider this a Non Celiac Gluten intolerant case or a case of someone who is on their way to becoming Celiac. His thought is she has a wheat allergy restrict wheat not gluten. Our ped says she is a celiac restrict gluten.

After all this, we feel we should have kept her off of gluten and done a challenge when she was much much older since we see first hand just how damaging the gluten challenge was. It didn't just affect her tummy. IT has affected all sorts of mental and milestone developments.

We will probably never know for sure but can only go by the results of the diet.

Good luck

Stacie

[nikky]

because she is so young the tests may not be positive but the blood work is worth a try, or you could keep her gluten free then challenge it when the results will be more reliable

and my appetite (at age 15) went from non existant to uncontrollable, although it is calming down now to a more normal level

the appatite soars because the body is making up for months of effectively being starved because of the inability to absorb nutrients and fat

[guessa1]

I just wanted to say thanks for such detailed replies....they were really helpful. When my husband gets home I am letting him read all these responses so we can make a decision together and of course we will still talk to our pediatrician on Thursday. I'll update you all!

[katifer]

thank yo so oo much for sharing your stories we were diagnosed with Celiac in Nov. my one year old and i---i have been in chronic pain and many other horrible symptoms since i was 11. My little boy is 21lbs but is sooo small compared to our first child---we have been doing gluten-free/CF for the past couple months but we also took out soy, most sugar, and absolutely YEAST. WE had awesome tests done that were clear thaey were genetic tests and because we had symptoms we were told we have Celiac---if you can ask for a genetic test they are very clear--and its just a blood test. oh and my son has started eating more but it is taking some time--and we had to clear ALL gluten out of our house because we kept on getting sick.. thanks again for sharing. Celiac is so misunderstood in this country it makes me so angry for all the children suffering.

[happygirl]

If you do have the blood tests done, here is a list of tests to request:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

from: Open Original Shared Link

"Q: I feel hungry all the time. Is that normal?

Yes, it is very common. Your body is making up for the time it wasn't fully absorbing foods. Hunger levels tend to normalize within the first months after eliminating gluten and beginning a well balanced diet of gluten-free foods."