Discussions with other parents of kids or babies with celiac disease. http://www.celiac.com/gluten-free/index.php Thu, 09 Feb 2012 22:18:43 +0000 60 http://www.celiac.com/gluten-free/topic/89796-how-long-until-distended-belly-goes-away/
My daughter has been gluten-free now for almost 2 weeks (will be 2 weeks tomorrow). She is still complaining of tummy pain. Today she complained several times so I checked her belly, and it is still very distended, and rock hard. Is this something that just takes time to dissipate? Or should I suspect she is getting glutened? Or maybe some other issue is going on?

Thanks,
Alissa]]> Thu, 09 Feb 2012 22:18:43 +0000 http://www.celiac.com/gluten-free/topic/89796-how-long-until-distended-belly-goes-away/ http://www.celiac.com/gluten-free/topic/89768-pale-stools/ I kind of linger around here, and don`t really post a lot, because i`m still learning and not diagnosed. However, i`m starting to worry, with all i`m learning. I`m being screened, and looking at my toddler in a whole new way! Here`s her `symptoms`
-Irritability (She`s usually pretty happy go lucky, but sometimes is just a grouch. I haven`t done a food journal to see if there`s anything to it, however have trialed cutting out dairy to no avail.)
-Distended belly (She seriously looks like she has a beer belly! Cute, but worrisome)
-Greyish stools....This one is most concerning to me!
-slow weight gain as an infant...she`s in the 75% now and seems to be thriving...but.....

Let me know what you guys think! Again, I`m being screened, have had a negative biopsy x2, however am pretty convinced...and if she has it, i`ll be 100% convinced I do too! (My dad has Celiac)]]> Thu, 09 Feb 2012 04:48:43 +0000 http://www.celiac.com/gluten-free/topic/89768-pale-stools/ http://www.celiac.com/gluten-free/topic/89748-son-with-possible-celiac-and-fecal-impaction/ Finally...here is where I need help....This damn "specialist" doesnt have the test results, she will have to find them and get back to me..WHAT?!...meanwhile I have figured out that almost 18g of his daily fiber intake comes from WHEAT..while I am waiting from someone to get back to me we are craming him full of gluten, surely that can not be right...I have started him on gluten free, waiting for referral to new GI...if this is truly Celiac, should going gluten free reslove his impaction?
Thanks for letting me get it out...frustrated and angry...any help would be appreciated.
BTW, altho he is not "small", he is always tired and hungry & has "pains"...which I previously attributed to the fact that he was a growing boy, but seeing as how he is a triplet and his brothers aren't like that I am now thinking this also is a symptom of what is wrong....]]> Wed, 08 Feb 2012 19:02:51 +0000 http://www.celiac.com/gluten-free/topic/89748-son-with-possible-celiac-and-fecal-impaction/ http://www.celiac.com/gluten-free/topic/89726-diffrent-stages/ Wed, 08 Feb 2012 02:59:57 +0000 http://www.celiac.com/gluten-free/topic/89726-diffrent-stages/ http://www.celiac.com/gluten-free/topic/89701-food-therapy-is-anyone-kids-in-this/
I was informed by a friend who is also a PT that there is such a thing as food therapy (like ot, pt etc..) does anyone use this to increase their child's vegetable diet. My 8 yr old is pretty stubborn about veggies and although I have increased her repertoire to include green beans and the occasional broccoli stems (no florets) so now she eats 4 veggie, she gags and throws up anything else. I believe a lot of it's mental and stems from her pre-gluten-free, in lots of pain days.

So does anyone use this form of therapy?

I don't need advice on how to pretty up or cover up a new veggie I have done it all !!!!!

Maureen]]> Tue, 07 Feb 2012 17:19:57 +0000 http://www.celiac.com/gluten-free/topic/89701-food-therapy-is-anyone-kids-in-this/ http://www.celiac.com/gluten-free/topic/89692-what-were-your-kids-symptoms/
We did an experiment for the past 2 weeks we gave her gluten free food and she put on 2 lbs. Then over 4 days she lost the weight again once back to a normal diet. Weird? Also another question if i wanted to have her blood tested and had recently given her gluten-free food for two weeks what would be the appropriate time to wait to have it done so it would show up positive if she had it. Everyone told me if you on it a few weeks it will come up negative. Sorry for the long rant just seeking advice and new to this.]]> Tue, 07 Feb 2012 13:33:25 +0000 http://www.celiac.com/gluten-free/topic/89692-what-were-your-kids-symptoms/ http://www.celiac.com/gluten-free/topic/89676-suddenly-craving-veggies-after-going-gluten-free/
So we've been gluten free for 2 weeks now (with a few missteps along the way. It's a learning process!) He normally is an extremely picky eater and the only thing I could get him to eat on a regular basis was my homemade whole wheat bread and oatmeal. It's all he wanted sometimes 3 times a day and since I want him to grow I just made it as healthful as I could and let him at it. How disheartened I am to learn that possibly I was making everything harder for him! Oh, the guilt!

I have read that sometimes people who cannot tolerate gluten actually crave it which would be the case with him. Now I wonder if the cravings were drowning out his bodies ability to crave what it actually needs. For the past week he has eaten more vegetables than I have ever seen him eat. He will ask me for raw veggies if he sees me chopping them to prepare soup! He also at two salads at dinner tonight! I cannot even begine to describe how crazy it is for him to do that.


Do I chalk it up to coincidence or is this something that could reasonably be a result of the diet change?]]> Tue, 07 Feb 2012 02:52:16 +0000 http://www.celiac.com/gluten-free/topic/89676-suddenly-craving-veggies-after-going-gluten-free/ http://www.celiac.com/gluten-free/topic/89642-she-grew/ the head of the gastro dept said our daughter had no issue with gluten and to keep her on a normal diet, we ignored the moron and in the last 2 weeks she has gone from a 7.5 to 9 in shoes and grown 1 inch! Mon, 06 Feb 2012 05:29:29 +0000 http://www.celiac.com/gluten-free/topic/89642-she-grew/ http://www.celiac.com/gluten-free/topic/89636-kid-allways-hungry/ My son complains that the gluten-free foods are not filling and is always hungry. What can I give him so he feels full, is he missing something in his diet that he needs. He is a very picky eater as-well. Any suggestions would be helpful. Mon, 06 Feb 2012 02:18:43 +0000 http://www.celiac.com/gluten-free/topic/89636-kid-allways-hungry/ http://www.celiac.com/gluten-free/topic/89564-gluten-allergen-free-kids-shampoo/
Does anyone know what shampoo is allergen & gluten-free for my babies?

Thanks,
Erin]]> Fri, 03 Feb 2012 06:52:25 +0000 http://www.celiac.com/gluten-free/topic/89564-gluten-allergen-free-kids-shampoo/ http://www.celiac.com/gluten-free/topic/89562-stomach-stuff/
Last week on Thu., she came down with the big D. I kept her home from school. There was no school on Fri. I had a Drs. appointment in another city so I took her with me. We were there for long enough that she missed dance class. She didn't appear to be sick that evening. In fact I had to insist that she use the toilet. We had gone to lunch earlier with my parents and I knew she hadn't used the toilet in 5 hours! This hasn't been a big issue lately but it sure was when she was younger. The mere fact that I would tell her to use the toilet would make her not use it. It was a control thing. And she wound up with UTI's and bladder irritation because of it. As it turned out she did need to go. But there was no D.

We went grocery shopping in still another city. Came home. Had dinner. She had a salad that was going to expire that day. Perhaps not the best choice but her stomach seemed okay then.

Next day we celebrated my brother's birthday. We ate at the same place where we had lunch the day before. We eat there at least once a week and they are very careful with our food. We have never had any issues eating there, ever. We also do not order exactly as is from the menu. They make food special for us, no matter the issue. My mom has been on some wacky diets over the years. If all she can eat is chicken and spinach, they will make her that.

On the way out of that restaurant, we stopped into Garlic Jim's. Asked if their Taco Pizza could be made gluten-free. We were told that it could but that they couldn't put the nacho chips on the top because they contained gluten. So I went ahead and ordered one. We have had their pizza several tims before with no problems. Daughter even commented on how happy she was that they were being so careful with our pizza. We sat in there while they made it and the gluten-free part was mentioned severals times. We took it home to eat the next day. I now will not recommend this because they do put lettuce on it and it gets a bit wilted. Better to have it fresh. Anyway...

Sunday we did our usual shopping. Costco then Target. We did have a sample at Costco. It was Boursin cheese spread on gluten-free rice crackers. We bought a box of the crackers. At Target we had an order of French Fries (they're baked), nachos and popcorn. All things we've eaten before with no problem. And we didn't eat all of it. Just a little taste of each thing. Works out better when my husband is with us because he'll eat what we don't.

Came home and ate the pizza but quite late for us because we really weren't hungry.

Around bedtime, daughter began complaining of loud noises coming from her stomach. I couldn't hear it but she said it was bad. Then she grabbed the pukey bowl thinking she might puke. She didn't. Instead it came out the other way. She said it was the worst D she had ever had. Only then did she tell me that she had in fact had some D on Fri. and Sat. but it had been minor.

She moaned and groaned all night and said her stomach hurt. I kept her home from school on Mon. But I had to go for a mammogram. I took her in there with me and then we went downstairs to the Walk In Clinic.

Dr. there diagnosed gastroenteritis and said from the sounds of her stomach she was about to have D again soon. Which she did. Also said it was unlikely she could go to school the next day but she should be fine by Wed. If not she needed a followup with her pediatrician.

She thought she was better on Tues. Had a normal bowel movement. So we ate the rest of the pizza. But then 2 hours later she had D again! Part of me thought maybe it was the pizza but it would have had to be cross contamination because we were both sure the crust was the gluten-free one. But that wouldn't explain the D on Thu. because she didn't eat the pizza then.

I sent her to school on Wed. even though she wasn't feeling well. She had a math test to make up and the end of the semester had gotten changed due to a week of snow and subsequent school closeure. But then the math teacher had to go break her arm and need an operation so she wasn't there. The teacher's aid said Angela could take the test on Fri., tomorrow. I had told Angela if she got sick in school to go to the nurse and then call me to come home. Well she did get sick but didn't call me! She continued to have D all night.

And now today? More D. all day. I did call and try to get an appointment with the pediatrician but he can't see her till Mon.

She is still suffering. Complaining of stomach pain and nothing seems to help. The printout given to me by the Dr. said to have her eat her normal diet, perhaps adding starches if she wanted them. I looked on the Internet and they are no longer recommending the BRAT diet because it causes zinc deficiency. There was mention of something called CRAM. Similar but with added cereal. But most sources said to eat the normal diet, just avoid fried foods, spicy foods and foods with a lot of sugar. The Dr. did tell her to drink Pedialyte and the paperworkd she gave us said to drink watered down Gatorade.

So I am frustrated. She doesn't want to eat. Not anything. She is drinking. She is overweight and if this causes some weight loss, it's fine from that aspect. But she looks so horrible. Black around the eyes and pale skin. And she feels miserable.

So what would you do if you were me? Keep her home and then take her to the Dr. on Monday? At this point I don't even care about the math test. I just want her better. My mom said I should take her back to the Walk In clinic tomorrow but I'm afraid if I do that they might wind up getting mad at me for not doing what they said.

I don't know what to think that it is at this point. She was in contact with my eldery parents, my brother and SIL, their son and his girlfriend. The only one of us who has had D is my dad but he has additional medical issues and my mom said he isn't eating what he is supposed to. Or taking his meds like he is supposed to. And when he fouls those things up, he gets D. I am used to that with him. So I don't think his is related. I am thinking if it were gastroenteritis or food poisoning, someone else in the family would have gotten it.

What to do? What to do?]]> Fri, 03 Feb 2012 05:04:50 +0000 http://www.celiac.com/gluten-free/topic/89562-stomach-stuff/ http://www.celiac.com/gluten-free/topic/89543-experienced-mom-advice/
does anyone have advice on Activities/camps/groups for Northeast Ohio Celiacs. Also, I need advice on how to send him for playdate in the future and how to send him to preschool this year. What mistakes have you learned from? ANY GOOD ADVICE PLEASE!!! thanks



My son was just diagnosed with Celiac Disease. his levels were >139 so he did not need a biopsy.
My son was a prefectly healthy, normal baby. He has always been alittle smaller since birth. But my husband and I are thinner people and so is the rest of our family (No history of celiac). Up until a week before my ds 2nd birthday, he had not been sick! then he got a nasty case of the CROUP and ear infection (September 2011). the cough went away with steriods but the appetite decreased and his energy level spiraled down as well. We went 2.5 months in and out of the dr. for constipation. They even did 2 ultrasounds to see if there was a block. nothing... so the dr. said, It's just a case of the constipation and put him on miralax. He continued to lose more weight and become unhealthy looking:( People were very worried! then the Croup came back again (december2011)!! I sat and cried to the nurse at the dr. office when i learned that even after all my efforts, my 2yr old was only 23.8lbs and not growing... She told the dr. and he came in and said we were going to do some testing. He took 4 stool samples for parasites, sceduled test for Cystic fibrosis, celiac disease, thyroid and what ever else he recommended. The Dr. called us at 630pm on a friday night and gave us the results. He said start gluten-free right away. In 4 days of gluten free our son gained 1.5 lbs. We got into the PED GI with childrens hosp the following wednesday. So far our son has gained weight, has energy, and you'd never gues anything was wrong! I asked to be tested for Celiac because i would like to know what side of the family it came from so the other children can be watched closely for signs. But they said my isnurance won't cover the test. Why Not? And -Casey in Ohio-]]> Thu, 02 Feb 2012 15:03:32 +0000 http://www.celiac.com/gluten-free/topic/89543-experienced-mom-advice/ http://www.celiac.com/gluten-free/topic/89530-is-this-antibiotic-gluten-free-i-cant-find-info/
It is by West-ward pharmaceuticals and the tutti frutti flavor is making me nervous.

Anyone have experience with this one? CVS didn't know. Website: nothing.

Thanks!]]> Thu, 02 Feb 2012 04:19:55 +0000 http://www.celiac.com/gluten-free/topic/89530-is-this-antibiotic-gluten-free-i-cant-find-info/ http://www.celiac.com/gluten-free/topic/89516-what-to-do-for-pain/ At the moment he has a prescription for hycosamine(SP?). It helps a little with his pain. He was given librax by another doctor, it worked really well, unfortunately wasn't covered by the insurance! However, we are thinking of buying it out of pocket, just to get some relief. Does any one else use this! Hopefully soon we will be savvy/careful/educated enough so that he isn't exposed to gluten. But in the meantime if he gets gluten even in cross contamination he is in bed for the better part of two days in pain off and all day! And the rest off the time he lives in fear of eating in case the pain starts again! It makes play dates or time at grandparents, eating out etc almost impossible!!
So that is a little background to his story...the question is- if you have a child with severe pain, what are your pain management strategies??? As the stomach started to heal did you notice a little better tolerance to cross contamination issues, or will the pain always be like this??? Also we have a trip coming up that includes a long flight----any suggestion for eating while we travel!! I will pack snacks etc, but thought it would be helpful to know some kid friendly frozen meals that I could take and have a stewardess microwave for us??? Thanks in advance!!]]> Wed, 01 Feb 2012 21:54:44 +0000 http://www.celiac.com/gluten-free/topic/89516-what-to-do-for-pain/ http://www.celiac.com/gluten-free/topic/89497-proud-of-my-9-year-old/
Today the 9 y.o. came home from school and told me that she and her friend Allie, who sit next to each other, are in the habit of sharing a bit of their desserts with each other. (it's a small private school and they bring lunchboxes and eat at their desks.) She handed Allie a hunk of her homemade gluten-free macaroon ("yum" said Allie) and Allie handed DD a hunk of her cookie. DD put it down, intending to eat it in a minute, then said, "Hey! Are you trying to poison me?" She was pretty proud of herself that she remembered and resisted.

This from the girl who told me she was going to run away when we went gluten free. I mean, she was kidding, but sort of not...?

I'm also loving that my 16 y.o.'s boyfriend and his family have been very sweet and supportive. He's a nice, respectful kid, and is educating himself about it. His mom, who thinks my daughter is the bee's knees, has already called me to ask what is safe and what is not, and is stocking up on safe foods for DD to eat while over at their house.

Now if only I could get my own family interested, and get them to get tested!]]> Wed, 01 Feb 2012 06:56:19 +0000 http://www.celiac.com/gluten-free/topic/89497-proud-of-my-9-year-old/