Is This Another Possible Symptom?

[floridanative]

Those of you who know me know I finally gave up in trying to convince my sister to test her son for Celiac as she has an idiot GI that thinks if she doesn't have it, her son can't either. While WE all know that is ridculously untrue, it's hard to convince people not to trust doctors. So the possible symptoms (that I knew about before) are he has lactose intolerance, he is little (I think smaller than his sister at same age) and he had 11 cavities at the dentist right around his 3rd b-day in Feb. Now I've just found out from my Celiac Mother who babysits the kid often that he is always hungry and always eating and she can't understand why he's not any bigger than he is. Is this another possible sign of Celiac? I know I can't ask my sister to test him again, but my Mother might be able to coerce her to do so eventually.

[Ursa Major]

Yes, it is another possible symptom. If he isn't absorbing nutrients because of damaged villi, it makes sense he would be hungry all the time. One of my grandsons is the same way, same symptoms, always, always hungry, but my daughter won't listen to me, either. It is soooooooooooo frustrating! I hope your mother gets through to your sister. It is so hard to see another member of your family suffering needlessly, especially a little child.

[jerseyangel]

Tiffany--

Yes, that is a symptom. He's not absorbing, if he's Celiac, and his body is sending "signals" to send in more of what it is lacking.

[eleep]

The "where does all that food go?" issue was a big joke in my family for years, but now I think we're all having second thoughts about it!

eleep

[Nantzie]

YES!!! I was constantly hungry before I went gluten-free. I was either eating, or actively forcing myself not to eat. If I wasn't overweight and worrying about gaining more weight at the time, I would have been eating all the time.

My 4yo daughter was also constantly hungry. It didn't occur to me to worry about it because they say that kids go through food things because of growth spurts. But then, when I was watching a show about it and they said not to worry about it too much because they don't need a whole lot of food, and their stomachs are the size of their fist, I just stopped because my skinny daughter was sitting there eating her fourth package of peanut butter crackers. That's when I put two and two together (finally) and realized that something was very wrong with her digestion. So I finally ordered her test kit from Enterolab, which came back positive.

You'd think having it myself would have made me notice this earlier...

She's been gluten-free for about a week or so at this point. The first thing that I noticed was the she wasn't waking up starving. It used to be that as soon as she opened her eyes in the morning she'd want to go downstairs and eat. If I hadn't already taken a shower by the time she woke up, she would throw an absolute fit because she had to wait to eat breakfast. Now, I'll hear her playing in her room for a while before she wakes me up. So now, the first thing she thinks of when she gets up is TOYS, and not FOOD. Much more normal I think.

Nancy

[floridanative]

Yes - going through Mother is the only way I think the kid may get tested. It's like talking to a brick wall with my sister. It's already hurt our relationship someone and I've only mentioned it a few times over 7 months but of course, that's a few times more than she cares to hear it.

It will be interesting to see how my niece fares this year at school. She was out so many days last year due to viral infections, they had to pay for her to graduate. I think it was just for 13 extra days but still it was a free program as long as you showed up. Maybe the son doesn't have Celiac and she does - if there is a virus accross town, she gets it. Doc explains it away that she was not ever in daycare and so the exposure to germs is new to her. Well if her brother doesn't get sick with virus' all the time next year, then that theory won't hold true. And why doesn't the brother get sick every time she does anyway? He is always exposed to her when she's sick.

Oh Nantzie - you were writing as I was so I am editing this. I'm so glad you figured that out about your child. Now I'm even more worried. My Mother is coming for a visit in October and I am going to print some of this info for her to read. I am also going to ask some people in my support group to tell me about their kids because my Mother doesn't trust message boards so the more amo I can share (esp. from people I've actually met0 the better. I need to convince her so she can convince my sister. But I really want them to get the new test for the kid - the saliva, blood and urine test? I have not heard anything about it coming out and Dr. Rudert says it's slated for release in 2006. No way she'd do Enterolab - at this point anyway.

Nantzie, if you don't mind my asking - why did you go through enterolab? Is that how you were dx'd?

[Nic]

I saw this with my son after I thought he was gluten free (turned out he wasn't, misscommunication with Chinese take out ). We would call it the feeding frenzy because he would go from one thing to the next and it was weird, it was almost like the more he ate the more he wanted. Once the frenzy stopped he would be ok for a while.

Nicole

[Nantzie]

Actually I pretty much figured the gluten thing out on my own. At the time though (not any more) my husband thought I was a hypochondriac and that I'd finally gone off the deep end thinking that I had some bizarre disease. So I went through enterolab because the blood tests and biopsy are so unreliable. I did actually get the blood tests and biopsy, which were all negative. But my symptoms that I'd had for years, some for most of my life, all went away after even just a few days of being gluten-free. By the time my biopsy came back negative, my husband was already fully on-board with my gluten-free diet.

The reason I did Enterolab was because they will do your genetic tests for $150. I figured that if I did that, I would know for sure if I was even capable of having it or not. Just wanted to make sure I was barking up the right tree. When that came back as having double DQ1, and I found from other people's posts and sig lines that DQ1 came along with classic symptoms along with pain and neuro/psych symptoms, along with my trying days of gluten-free along the way (with every day being gluten-free being a day I could actually move), I knew that I had it. I didn't do any of the other tests on myself. I did the genetic tests on my kids as I could afford it; they didn't have symptoms at the time. They both came back with double DQ1. So I knew that if they started having symptoms it would need to be ruled out. But when my daughter started having more and more symptoms, I did the $99 gluten stool test for her, which came back positive. I took her test results to her pediatrician and printed out all of the information Enterolab has on their accredidation and the doctor's resume. He told me that since Enterolab is an accredited lab he trusts that their results are accurate, and he gave me a referral to a ped GI, which we have an appt for in mid-Sept. I didn't wait for the appt to put her gluten-free. I don't see the use of the endoscopy at this point. Knowing my negative test results, and knowing that she has the same DQ1-type symptoms I've always had, as far as I'm concerned she's positive for it.

The fact that some of her symptoms have started going away already, is another mark in the positive column.

A couple of days ago I think we both got glutened. I know I did because I was irritable and headachey. Jenny was whiny, tearful and beligerant with her little brother. The combination of the two of us was just not fun for anyone.

I just sent off the same $99 gluten stool test for my son. He has some symptoms, but not as bad as Jenny got. He also acted like he might have gotten glutened along with us the other day. Every time Jenny came near him the other day, he'd screech like a veloceraptor (remember them from Jurrassic Park?), which would make shooting pains go through my head, which would make me yell at Jenny for making him scream, which would make her cry, which would send pains through my head, etc., etc., etc. Not a fun day.

This is so hard because there are so many instances of false negatives on the blood test or biopsy, and people like me who don't have any positive traditional tests at all, who find through their own decision to go gluten-free that they definitely have a problem with gluten. I was actually in so much pain there toward the end that I would have bet money that I would be in a wheelchair within five years. Now, I'm totally fine. I move furniture around, run around the yard with my kids, etc.

It's hard to explain to people who think doctors are all-knowing, all-seeing, super-humans that doctors don't know everything, and medical science is a work in progress, that even if they get these tests done and they come back negative, that they can still have celiac.

One thing you might try is to get the genetic test done through Enterolab. A lot people won't argue with genetics.

I've got family and friends who have symptoms too. Nobody has gotten tested though. And most of them saw how sick I was and how quickly I got better. And they're still not getting tested. They won't even try just not eating gluten for a few days. I don't get it. I really subscribe to the theory that gluten is like a drug. People don't like it when you mess with their drugs.

Nancy

[floridanative]

I've got family and friends who have symptoms too. Nobody has gotten tested though. And most of them saw how sick I was and how quickly I got better. And they're still not getting tested. They won't even try just not eating gluten for a few days. I don't get it. I really subscribe to the theory that gluten is like a drug. People don't like it when you mess with their drugs.

Nancy

[Lauren M]

Oh my goodness, that was certainly me, pre-diagnosis! I was absolutely ravenous (for bread and pasta, of all things). I think that it was really ironic that I craved what was, more or less, poisonous to me. This type of eating culminated in a severe bout of pancreatitis, and then a Celiac diagnosis.

On the subject of relatives in denial - I totally sympathize. My aunt is a type 1 diabetic w/ "IBS" and the enamel on her teeth is wearing out, but she won't be tested. She said that she doesn't want any more dietary restrictions. I can't even get my parents to be tested. I just worry about them. But in your case, I can't imagine a parent not having their child tested?? It's a simple blood test! It must be so frustrating and heartbreaking for you.

- Lauren

[floridanative]

[ It's a simple blood test! It must be so frustrating and heartbreaking for you.

- Lauren

[Nantzie]

It took me a while to get my daughter tested for the stool test. But as soon as I had that realization, like DUH! She's having symptoms! I was right on it.

But when her results came back positive, even though I was expecting it, it made me feel so sad and so guilty that I had done this to her. It's so illogical. I'm thrilled that I got diagnosed and my life has improved 100-fold. I'm an active member and have no problem encouraging people on here. But that positive test result kind of kicked me in the stomach for some reason. I think part of it was that her symptoms hadn't gotten awful -- yet. But the diarrhea started to get really bad, especially the last few weeks when we were waiting for the results. I think because she's my child and I want nothing but rainbows and sunshine for her every day of her life, it's hard to think about her having to deal with this for the rest of her life.

But she also won't have to deal with what I had to deal with growing up - Poor memory and concentration, not being able to follow / remember lectures in school, exhaustion, nightmares, insomnia, depression, anxiety, bad grades, feeling stupid, no college opportunities, limited career choices, and bad relationships because of low self esteem due to all the problems I had.

So, any inconvenience that she has during her life pales in comparison to what it would be like for her if I didn't get her diagnosed early.

Nancy

[queenofhearts]

I just wanted to post because there is hope, I think, that you'll get through eventually. From the moment I was diagnosed, I was almost certain my sister was Celiac because she has a whole slew of symptoms, not all the same as mine, but definitely fitting the profile. I mentioned it to her then & she brushed it off... I brought it up maybe once or twice more, again no response. But yesterday as she was describing her horrible lactose symptoms I just had to bring it up again, & lo! She told me she'd get tested at her next physical. It's not until November, but at least she said she'd do it! I think it might be the answer to her prayers, so I'm very happy about it.

[floridanative]

Nantzie - thanks for sharing your feelings.....I understand and think maybe my sister wants to think this can't happen to her kid.

queenofhears - that is so wonderful about your sister! Even though mine did get the blood test and they were negative, I highly suspect one day she'll test positive and if that happens, I think she'd demand her kids be tested as well.

[gfp]

The "where does all that food go?" issue was a big joke in my family for years, but now I think we're all having second thoughts about it!

eleep

Floridanative

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[Jodele]

The "where does all that food go?" issue was a big joke in my family for years, but now I think we're all having second thoughts about it!

eleep

My family said that I had a wooden leg, that where I put all the food. I would wake up in the middle of the night and my mom would make me something to eat. I was always hungry and I started school I weigh 23 lbs at age six. and I just found out that I have celiac and I am now 33yrs.

jodele

[Terri-Anne]

My son is 6 years old, tall for his age, and a healthy looking lean, not skinny looking and not chunky looking. He used to have considerable symptoms with wheat ingestion, and was taken off wheat for 3 full years, from around his second birthday until last summer. Celiac tests came back negative, and allergists tests also came back negative. Re-introduced a piece of bread in allergist office expecting a multitude of symptoms within 30 minutes. When none appeared, we all concluded that he must have outgrown an allergy to wheat, so I excitedly put him back on a regular wheat filled diet.

One of his symptoms was insatiable hunger when he was accidentally slipped some wheat.

While he currently has NONE of the symptoms he used to have with wheat-accidents, he does seem to have an excessive appetite for a six year old.

Please tell me whether you would consider this excessive hunger:

Breakfast at about 9 am-peanut butter and jam sandwich

Snack at about 11:30-bag of chips

Lunch at around 12:30-Kolbossa Sandwich

-Meat pie

3:30 pm-Kolbossa Sandwich

6:30 pm-FOUR pieces of pizza

10 pm- Yes I know this is terribly late for a six year old to be up, but his cousins were here and it IS the summertime-Crying because I won't let him eat before going to bed, insisiting he is HUNGRY!

My spidey-senses are just a wee bit alerted, as the amount he eats just doesn't seem reasonable to me.

What do you think?

[Nantzie]

Spidey senses... That's so cute!

Yes. I think that that's a lot of food for a six year old. And for him still to be hungry... If you think about the actual size of his stomach, and then visualize the sheer volume of four pieces of pizza compared to how small his stomach must be... That was the realization I had with the peanut butter crackers. I still have no idea where they all went.

The pattern that you're describing is kind of what I saw too. A PB&J sandwich for breakfast (that's what my daughter used to eat for breakfast too!), then a snack not too long later, then a snack after that, and on and on, until a ravenous dinner and continued hunger after that. It was like the longer the day went on, the more hungry she became.

But on the days when she'd eat my gluten-free crackers and cheese for breakfast, then gluten-free taquitos for lunch, and a snack of gluten-free chips (Cool Ranch Doritos) for lunch, she'd eat a normal sized dinner. If I started the day off with gluten, it was all over. She'd be eating constantly. And once I gave her gluten, like chicken nuggets for lunch, it revved up her appetite.

BTW, if you get Pamela's Amazing Wheat Free Bread Mix, it works REALLY well with PB&J. It smells SO good while it's baking. Like real bread. It even works great for just bread and butter, hot out of the oven, or sandwiches. You don't have to toast it to make it taste good. Very close to wheat bread. Amazon sells a box of six packages for $20. Mmmm....

Nancy

[Nic]

BTW, if you get Pamela's Amazing Wheat Free Bread Mix, it works REALLY well with PB&J. It smells SO good while it's baking. Like real bread. It even works great for just bread and butter, hot out of the oven, or sandwiches. You don't have to toast it to make it taste good. Very close to wheat bread. Amazon sells a box of six packages for $20. Mmmm....

Nancy

Nancy,

Is this one just a mix you can mix in a bowl and pour in a bread pan? I know some recipes require a bread machine. We had tried the Gluten Free Pantries Sandwich Bread mix and it was good but still a little dense and fell apart easily during storage. How is Pamelas?

Nicole

[Papa-Hen]

Yes. I was always hungry, especially for breads, cakes, cookies, pizza, etc.

Thank God it wasn't alcohol I craved so much, or I'd be a real mess.

I, too, had many cavities. I also had back spasms. My guess is that I didn't absorb calcium well. These have not been a problem since I've started taking a calcium/magnesium supplement. My dentist was even impressed that my teeth were so hard.

Best wishes,

- Henry

[elonwy]

When I was a kid and would stay over at friends houses, they would call my mother and complain "Why didn't you tell me she ate so much?" I was a short under-weight little vacuum. Funny how those cute stories from childhood can come back and make you think "hmmmm, yep had it back then too."

Elonwy

[Nantzie]

Nicole,

Yep, it has hand mixing instructions on the package. I also noticed that on this box of mix, the packages just say Pamela's Wheat Free Bread Mix. No "amazing". It's the same thing. So if you go looking for it, it may say it either way.

It holds together totally fine. In storage too.

Nancy