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Nic

So Frustrated

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I am having such a bad week. My celiac son Jacob is suffering through this bout of constipation that does not seem to be gluten related. It comes in cycles. One day the pooping just stops and then for upward of a week he can't get anything out and he is in horrible discomfort. My youngest son is testing negative for everything and is gaining upward of a pound a month and eating nothing and his Thanksgiving day pants don't fit. I just found out tonight that my son's (the Celiac) class made pumpkin pie yesterday and they ate it today. He was left out. I didn't read the notice correctly. I thought the teacher was just sending home the recipe so I skimmed it. Well, at the very bottom it said, "we will be eating our pie tomorrow!". Can't believe it. He was so sick this morning and he so bravely went to school and then he couldn't eat pie. I know this sounds rediculous to be harping on but it was just the straw that broke the camels back. He told me and I walked out of the room and cried. It has been one problem after the next since they were born and I just feel like I need a break. Funny how pie could put you over the edge. Sorry to vent, figured most of you would understand though.

Nicole

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sorry to hear about your bad day and please know that you are not alone. :) i have managed to ruin a two layer cake, 3 dozen muffins, 3 loaves of banana bread, and a pan of brownies in the past three days. I'm ready to scream!!!!!! me son somehow got glutened and he had a terrible stomach ache yesterday and then woke up with 8, yes 8, canker sores this morning. Now I'm trying to bake the second batch of brownies. Hang in there!!! I feel your pain.

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Guest nini

{{{{{{{{{{{HUGS}}}}}}}}}}}}} vent away, we all have those moments that just push us over the edge...

mine was the time I had to tell my daughter that she could no longer have Corn Pops anymore...

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I'm sorry Nicole. :(

I know even the best of days can become challenging at times. Take a deep breath and look forward to tomorrow.

Enjoy your weekend.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I have so totally been where you are - some days I want to find a cocoon to hide in or go somewhere else. For me it was something minor that sent me into room bawling - but that was after 6 months of "which kid is sickest and needs to be seen first?" June 2003- Kathryn diagnosed with Kawasaki and was sick the rest of the summer, she was starting to feel better when Matt was diagnosed with diabetes...then the severe celiac symptoms started in Kathryn a month later - and it took several months of a very sick girl before we found out it was celiac, a month after that we found out Matt had high antibodies..in between the blood test and the biopsy, he broke his arm.... ok so you's think cause i had one celiac child and was doing gluten free with her - I'd be like pro - well telling my son was sooooooo hard, we both wept over not being able to eat a cheeseburger at Mcdonalds.

I was in rut for weeks and then it got better...but you can only take so much and ,yes the littlest thing can be the thing that sends you over the edge.

Call a friend, drink some green tea - or red wine of that works better :lol:

Post here and vent all you want. This is a large group of individuals that have been where you are and some are in the same place right now.

And - Kathyrn accidently glutened herself today- ate ketchup chips at school as she didnt read the label carefully. Migraine and tummy ache... then Matt has high blood sugars and has tummy ache secondary to that.

And we all understand if we hear a far off cheer - it will be you when your child has gone one week with normal poop! Certain thing moms with "normal kids" do not get: the joy of normal poop.

Hang in there

{{{{{{{{{{{HUGS}}}}}}}}}}}} form me too


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Added {{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}} from me too.

It's true. The phrase "the straw that broke the camel's back" has poignant meaning to moms, especially moms of kids with health issues. We can handle anything and keep a smile on our face for weeks, months, or even years, but there comes a point where we just can't handle one more freaking thing.

I felt so great after going gluten-free that I didn't have any problem with it. Totally fine. Thrilled in fact. I spent 18 years being sick. Just to find the cause of it and that it wasn't "stress" was so amazing and wonderful for me. But when my kids had to go gluten-free, even though they were eating all my gluten-free goodies, I was SOOO upset about it. There just comes a time, no matter how well you think you're doing, that it all just comes out.

Sometimes it feels silly that you're upset. But it's not. It's not silly at all. You've got a lot sitting on your shoulders and you're doing a great job.

Hugs, (again)

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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You know it is funny, the medical problems started with my second son 4 and a half years ago. This was before I knew my oldest was Celiac he was only 17 months when his brother was born. He was always constipated but nothing severe. Then as he turned 4 everything hit the fan and I said well ok, I have 2 kids with problems. And I handled it in such stride going specialist to specialist. But then this past summer we hit a point where everyone was well. No weird symptoms no problems. For 2 months we were good and healthy (I should really be grateful they got to enjoy their summer) but it gave me a chance to see what it feels like to not have anything to deal with. And now it is back and I think that is why the pie put me over the edge. Hopefully this too will pass soon.

Nicole

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I have to admit I didn't read eveything but it's very hard for Celiac's to get enough fibre. children need 5g's + 1 g for every year of age.

Kiwi is a great way to get a good amount 1 kiwi is 4G's. kidney beans and such is 7 for 1/2 cup I believe.

carrots, unpeeled potatoes, broccoli and stuff like that are 2.

We are slowly starting to introduce flax seed into our dd cereal and all baked goods. starting at 1 tsp at a time until we are at 2tbs..over a 4-5 week period. it can cause the big D if given too fast. We saw the dietician again this week this is why I know it...I didn't going in. I thouhght fiber was added to everything..MY BAD!!!

I know how you feel, we've all been there. vent as much as you need.


Char

Emmah 4 years- Celiac , gluten-free October 2006

Leigh-Ann 7 Years- Gluten lite

Gary- possible celiac

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I have to admit I didn't read eveything but it's very hard for Celiac's to get enough fibre. children need 5g's + 1 g for every year of age.

Kiwi is a great way to get a good amount 1 kiwi is 4G's. kidney beans and such is 7 for 1/2 cup I believe.

carrots, unpeeled potatoes, broccoli and stuff like that are 2.

We are slowly starting to introduce flax seed into our dd cereal and all baked goods. starting at 1 tsp at a time until we are at 2tbs..over a 4-5 week period. it can cause the big D if given too fast. We saw the dietician again this week this is why I know it...I didn't going in. I thouhght fiber was added to everything..MY BAD!!!

I know how you feel, we've all been there. vent as much as you need.

Hi, he takes Yummi Bear Fiber supplements. He is taking the maximum amount which is 4 bears and is equal to 1200 mg of fiber. How does that compare to the needed amount of 5g's? I am not good with g's and mg.

Nicole

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Hi Nicole, Oh my god I totally know how you feel. I had one of those days yesterday. My son tested negative recently so we are trying dietary response. We are still only grappling with the diet and its so so so hard to keep upbeat about it. Sometimes I really feel that if he were diagnosed 'officially' it would somehow make it easier to be rigid about things... my husband and I are fighting about it a bit recently and two days ago he said he wasnt sure were we doing the right thing with the diet as our son was so miserable with the bread (the bread is a big issue lately... ive tried so many different recipes and mixes and they are all pretty naff.. even with the advice ive been given on this board but im not the worlds best cook so its not good - and the loaves you buy in shops are manky altogether so they are a big no no!) so I cried and cried and then relented and said 'fine but him back on the normal bread then'. I felt like such a failure...

Well last night his behaviour was unbelievably bad. He was so cross and irritated. He walked into our sitting room and started to try and knock over the furniture he was in such a temper. That might have been the worst we've seen.. It broke my heart. It was (I felt) definite gluttened behaviour. I was partly relieved that my husband had seen it and he agreed to give the diet another go but it didnt stop me crying and crying for the rest of the night. The sobbing just wouldnt stop!! It was like having the baby blues just after having a baby! you know that time when you just start crying for no reason and cant stop for hours?? And I too feel like Ive been dealing with this day in and day out for the last five years...

Sorry for ranting too... I guess the reason Im telling you all this is so that you can rest assured that you are not alone. It might feel like you are alone... god knows I do!! It is hard to get support from family and friends without the scepticism... but you will get support here. This is a great board... and if nothing else, a listening ear is always at hand... I know how you feel and I hope that things get a bit better...

All the very best,

Liz (Ireland)

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I am So sorry that you are having such a crummy few days!! I do feel your pain and I hope that things start looking up for you!!

Happy Thanksgiving!!


Mom to:

Riley 8 -Tourettes, OCD, ADHD

Cooper 6 -Celiac dx'ed Dec. 2005

Jake 4- Resolved Verbal Apraxia, Coordination disorder and Sensory Integration Disorder

Sutton 3- Speech issues and sensory integration disorder

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Hi Nicole, Oh my god I totally know how you feel. I had one of those days yesterday. My son tested negative recently so we are trying dietary response. We are still only grappling with the diet and its so so so hard to keep upbeat about it. Sometimes I really feel that if he were diagnosed 'officially' it would somehow make it easier to be rigid about things... my husband and I are fighting about it a bit recently and two days ago he said he wasnt sure were we doing the right thing with the diet as our son was so miserable with the bread (the bread is a big issue lately... ive tried so many different recipes and mixes and they are all pretty naff.. even with the advice ive been given on this board but im not the worlds best cook so its not good - and the loaves you buy in shops are manky altogether so they are a big no no!) so I cried and cried and then relented and said 'fine but him back on the normal bread then'. I felt like such a failure...

Well last night his behaviour was unbelievably bad. He was so cross and irritated. He walked into our sitting room and started to try and knock over the furniture he was in such a temper. That might have been the worst we've seen.. It broke my heart. It was (I felt) definite gluttened behaviour. I was partly relieved that my husband had seen it and he agreed to give the diet another go but it didnt stop me crying and crying for the rest of the night. The sobbing just wouldnt stop!! It was like having the baby blues just after having a baby! you know that time when you just start crying for no reason and cant stop for hours?? And I too feel like Ive been dealing with this day in and day out for the last five years...

Sorry for ranting too... I guess the reason Im telling you all this is so that you can rest assured that you are not alone. It might feel like you are alone... god knows I do!! It is hard to get support from family and friends without the scepticism... but you will get support here. This is a great board... and if nothing else, a listening ear is always at hand... I know how you feel and I hope that things get a bit better...

All the very best,

Liz (Ireland)

Hi Liz, we have seen that behavior too. With my son he becomes very physical with other people as well. Usually in the form of play but my goodness, he is like a bulldozer. I am also sorry that you too are going through hard times. That is why I got right on the computer yesterday, all parents can understand how it feels to watch your child suffer.

Nicole

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Guest nini

Lizgreehy, have you tried the EnerG Light Tapioca Loaf yet? My daughter and I are in love with this bread for sandwiches. She's 6 1/2 and she says this is the best bread she's tried AND the first time I gave her some she thought I gave her gluten bread by mistake. The trick with any gluten-free breads is you HAVE to warm them in the microwave for about 20 seconds or until just warm and soft otherwise they aren't that great.

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Lizgreehy, have you tried the EnerG Light Tapioca Loaf yet? My daughter and I are in love with this bread for sandwiches. She's 6 1/2 and she says this is the best bread she's tried AND the first time I gave her some she thought I gave her gluten bread by mistake. The trick with any gluten-free breads is you HAVE to warm them in the microwave for about 20 seconds or until just warm and soft otherwise they aren't that great.

Nini - does the tapioca light taste the same as the regular tapicoa? I can only find the regular kind in my stores that I use and it really is his favorite but I am wondering if the light is somehow less dense.

Nicole

1000 Mg's in a G.

Nic, How old is your son?

He is 6 years old. If this comes up twice I am sorry, I tried it once and then replied to Nini and that one showed up but not my reply to this question. So I did it again.

Nicole

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Nic, how was your day today, How is Jacob?

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Nic--have you thought about the fact that he may also be intolerant of something else, like corn, soy, dairy, rice, nightshades. Gluten itself gives me diarrhea, yet corn, soy, rice cause constipation for me--some nightshades cause constipation, yet tomatoes give me diarrhea. Also, check everything, shampoo, soaps, lotions, anything that his hand touches that may get into his mouth. His age tends to put their pencil in their mouths, their crayons, anything.

I understand the distress in your mind too. I have been gluten free for 5 yrs and in the last 3 yrs all of the other intolerance's have popped up. Yesterday was extremely hard for me. Not only did I get something last week that caused constipation (I still have not figured out what), I was on the couch yesterday (Thanksgiving) with a blankey and heating pad all day with severe stomach cramps and in tears for much of the day, mourning food. All the ads on tv about holiday meals--mashed potatoes, turkey, stuffing, and gravy--I wanted it all so bad and I can't eat any of it anymore. There is too much fat content in turkey for me, I can't eat beef anymore and I have been afraid to try pork again.

I wish you luck, keep your chin up.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Nic, how was your day today, How is Jacob?

Sandy

Hi, Thanksgiving morning he woke up at 6:15 and the runs to the bathroom started from there. He would try to go, shaking and sweating, and then after like 15 minutes give up and go lay down. 5 minutes later he was running to the bathroom. He is always on Mirolax (stool softener) and fiber so after about 3 hours of this I gave in and gave him a laxative which I usually try to avoid. Well after about an hour the runs to the bathroom stopped and he seemed to feel better even though he had not pooped. Well 6 hours later, just as the box had promised, he finally went. So thank goodness, about 6 days of not pooping including 3 days of severe suffering, he finally feels better.

As for being intolerant to other foods, I have never challenged any other food and his RAST test came back negative for everything. The reason I have always thought it was not food related is because his diet is very much the same every week. And he can poop fine for about 2-4 weeks and then it just stops. You can see it coming too. It is like 1 day he only goes a little and then the next day his behavior is crazy and then you go into this. Well, hopefully we will get a break now. I hope you all had a nice Thanksgiving.

Nicole

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Nicole--I still would not rule out another intolerance--that's what happens to me. Constipation does not happen over night. Now that he has finally gone, now the cycle will start over--that's what constipation does. It has to build up in your system, then you have the pain. I would try eliminating one group of foods and see what happens. Only my opinion though.

I feel bad for the little guy, it's just not fair.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Guest nini

Nic, yes the light Tapioca loaf is LIGHT! It's a lot less dense than the regular loaf's all you have to do is hold a loaf in your hand and feel how light it is...

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Nicole--I still would not rule out another intolerance--that's what happens to me. Constipation does not happen over night. Now that he has finally gone, now the cycle will start over--that's what constipation does. It has to build up in your system, then you have the pain. I would try eliminating one group of foods and see what happens. Only my opinion though.

I feel bad for the little guy, it's just not fair.

Without getting personal, does this cycle sound similar to what you go through? For example, yesterday he finally went some, but I knew more would be coming. Then today, flood gates open and its massive diarrhea. If it continues the way it always has, after today he will poop pretty normal for about a couple of weeks or so and it starts again. The odd part is that this summer I started giving him acidophilus and I also started giving him Lactaid products as one doctor suggested that maybe it is a lactose problem. The GI said he doubts it is lactose because that causes diarrhea not constipation. I tried it anyway because of the diarrhea he gets after the constipation and for the whole summer he was fine. The doctor also said that people swear by acidophilus when they first start using it for constipation but then it tends to stop working after a while. Once summer was over it all started again. I have stopped the lactaid products because by the end of the summer if I took the lactaid away for a day nothing would go wrong so I assumed I was wrong on the lactose problem but did keep him on the acidolphilus which I believe is now doing nothing. Any ideas on lactose or does it seem like an unlikely suspect?

Nicole

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((Nic)) I am sorry that Jacob is feeling so crummy! I have been put over the edge by many things at times too.

My 7 year old dd has many allergies and reacts to things differently. The gluten seems to cause the tummy aches, constipation or D, and throwing up. The other allergies seems to cause eczema. Her milk allergy is to the protein in milk (casein).

She has been gluten free since last October and I just had to totally eliminate bread for a few months so she could "forget" what wheat bread tasted like. Now she likes her bread that I make.

Wish I could help you!


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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The GI said he doubts it is lactose because that causes diarrhea not constipation.

Actually another case of: it cant be....when maybe it is..

My son whom we recently discovered is lactose intolerant gets consitpated from milk, his sister Kathryn had classic symptoms - nausea, diarrhea. Doctors had been suggesting Matt wasnt eating enough fiber (when he was - beans, raw veggies, fruit, drinking water)...

Constipation in reaction to food intolerance would not be apparent for several days so - at least for us - we never made the connection til my daughter went lactose free and a light bulb went on - I said : hey Matt, you up to an experiment to find out of lactose is causing your "problem" ? So he had lacteeze (same as lactaid, different brand) and reduced dairy.

A week went by and Matt comes to me and whispers - mom , I havent had to change underwear all day! :) Since then we have the occcasional problem but related to him "holding it" til he gets home, rather than going at school.

His symptoms were - constipation and "skid marks" on his underwear [stool soiling].

*diarrhea following a periiod of constipatiion is not uncommon, it is a physiology thing = the colon has been at a standstill for several days then suddenly it gets moving again, and it takes a day for it to get back to its rhythm and the lining of the intestine would be irritated as well. Even more common if laxatives were used.

Man is the only mammal that drinks milk after being weaned, it's quite normal for the adult human being to NOT produce an enzyme usually needed in infancy.

Constipation or diarrhea are common symptoms in pets who are being fed cheese or cow's milk. Yes dogs love cheese and cats will drink milk but its not good for them, they like it cause of the fat content. These are also the same animals that roll in dead things, eat mice or lick each others butts so they are not known for their dietary discretion :lol::lol:

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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As the room mother of my son who was diagnosed with Aultisum... but is sensory challenged... I cooked chicken soup for the kids ... ( I read all the ingredients ... and made sure the none were wheat ( my little secret) But ... my baby 1 year old is the reason I am here. I can see that this is going to be a big problem... school parties. IN the next month I am going to be baking gluten free. and trying to come up with stuff that is gluten free.

Thanks to Kibbie .. I really think I would have just died.....

and for all the people here... thanks .... It is hard. I hate this disease. No one understands how scary and hurtful this is... hurtful for the kids eating some thing they want to eat to fit in...... and scary when they start getting ill. But I get it . here is a big hug............................................... for you ................................................ Your not alone. We will have to figure out a gluten free pumpkin pie.... so he can bring his own....

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Nicole

He is 6 years old. If this comes up twice I am sorry, I tried it once and then replied to Nini and that one showed up but not my reply to this question. So I did it again.

Nicole


Char

Emmah 4 years- Celiac , gluten-free October 2006

Leigh-Ann 7 Years- Gluten lite

Gary- possible celiac

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