He Got Gluten...

[cherie012]

Well, it was nearly 2 weeks since being gluten free. And, we got snowed in with the inlaws, so, his birthday cake ended up being regular. He had a small bit of cake, ( icing has gluten too, not the gluten-free stuff) and some breading on his shrimp, and 3 bites of a roll.... And..... Like usual, 3-5 hours after ingesting it, the nasty return of his diarrhea. today is day 2, and it's still coming. He had been having TOTALLY normal BM's before the ingestion.

I guess this is conclusive then? I mean, take it away, he gets better. Give it back, he returns to where he was... I guess on the positive side, my MIL, FIL, and DH all got to see first hand the actual reactions that follow the ingestion, so no more questioning me, or giving me "that little bit won't hurt him" etc...... Wow.

[VydorScope]

Well, it was nearly 2 weeks since being gluten free. And, we got snowed in with the inlaws, so, his birthday cake ended up being regular. He had a small bit of cake, ( icing has gluten too, not the gluten-free stuff) and some breading on his shrimp, and 3 bites of a roll.... And..... Like usual, 3-5 hours after ingesting it, the nasty return of his diarrhea. today is day 2, and it's still coming. He had been having TOTALLY normal BM's before the ingestion.

I guess this is conclusive then? I mean, take it away, he gets better. Give it back, he returns to where he was... I guess on the positive side, my MIL, FIL, and DH all got to see first hand the actual reactions that follow the ingestion, so no more questioning me, or giving me "that little bit won't hurt him" etc...... Wow.

IMO, Yes, thats conclusive. Far more so then the so-called tests that exist. But I am not a doctor, and you should keep that in mind when reading posts here...

[key]

This is the way my son was diagnosed. We read about celiac disease and I knew that had to be what he had. He got better. Tried some two weeks later, got sick again. Like your son he had never had normal stools before.

I got my blood tested later and I had borderline positive blood work after five weeks on the diet. Your family will want you to keep him gluten free. Just from my own experience, getting gluten after going gluten free if you have celiac is torture. My poor son is miserable when he gets it, so try as much as possible from now on to keep him gluten free. I mean don't give him anything that you don't know is gluten free. Just from experience, I felt really bad when I gave him some spaghetti sauce that appeared to be ok, but had spice listed. Well there must have been gluten in it somewhere. I would have called, but sometimes you can't get a number on specialty foods. There are some things you will never quite know about, so I just don't give them to my son.

Good luck and glad you got your answers.

Monica

[cherie012]

IMO, Yes, thats conclusive. Far more so then the so-called tests that exist. But I am not a doctor, and you should keep that in mind when reading posts here...

I am not here asking for a dr's advice~ I am asking for advice from others who have been there done that and could probably write a book. I am a RN and have a little knowledge of where to seek out "real" medical advice both live and on the web, and have access to my son's dr's and thier opinions,and frankly I am at the end of my rope with them, seeing how I am given an onlslaught of meds with nasty side effects for my young son. I mean no offense from this, just trying to state where I am coming from, and where I have been, so that there is no misunderstanding as to what I am seeking out.

This is the way my son was diagnosed. We read about celiac disease and I knew that had to be what he had. He got better. Tried some two weeks later, got sick again. Like your son he had never had normal stools before.

This is what I have thought. In the back of my mind it was my biggest concern before we got the genetic testing, and he has both genes. Then, the trial, it seems to me like this is the key, even though the dr's would rather diagnose it as possible chrons/ulcerative colitis and give meds that can cause brain injury in children under 2. While it is a relief to have some form of an answer, it sometimes seems overwhelming when you start reading labels...

[VydorScope]

I am not here asking for a dr's advice~ I am asking for advice from others who have been there done that and could probably write a book. I am a RN and have a little knowledge of where to seek out "real" medical advice both live and on the web, and have access to my son's dr's and thier opinions,and frankly I am at the end of my rope with them, seeing how I am given an onlslaught of meds with nasty side effects for my young son. I mean no offense from this, just trying to state where I am coming from, and where I have been, so that there is no misunderstanding as to what I am seeking out.

I just worry, cuase i have a tendecny to sound very authoritative, and I do not want anyone mistaking my traingin (in computers and statistics) for a Doctor.

This is what I have thought. In the back of my mind it was my biggest concern before we got the genetic testing, and he has both genes. Then, the trial, it seems to me like this is the key, even though the dr's would rather diagnose it as possible chrons/ulcerative colitis and give meds that can cause brain injury in children under 2. While it is a relief to have some form of an answer, it sometimes seems overwhelming when you start reading labels...

If it was me, and it was back when my son was 18months old, once you got the dx via diet, I woudl never putmy child back on gluten. The links to scary stuff like Autism and Cancer is to real for me!

Personly I would not take those meds either.

[cherie012]

I just worry, cuase i have a tendecny to sound very authoritative, and I do not want anyone mistaking my traingin (in computers and statistics) for a Doctor.

If it was me, and it was back when my son was 18months old, once you got the dx via diet, I woudl never putmy child back on gluten. The links to scary stuff like Autism and Cancer is to real for me!

Personly I would not take those meds either.

I totally understand, and didn't want to sound harsh with my reply~ I mean, IMO and experience, the info is where the masses are, from people who have been there done that, with regards to this stuff. I mean, my brother ( who has graves) asked his dr about this, since my son tested positive for the genes, and his answer was "you're too big to have it, no point in testing". Um, yea. He is 6'3 ( tall) and 130lbs(extremely thin).. OK.

We will be gluten free, at least as much as I possibly can do so. I am still so new at this I get overload trying to read on good/not good. But, it has to be done. He's been so happy, energetic, and sleeping MUCH better than he ever has ( never slept through the night until very recently.) I think that counts for something... At least, I hope it does!

[jerseyangel]

Cherie--Of course it counts for something. I think its wonderful that you're trying to keep your child off the meds. when you feel that the dietary change is what will help him. I think you're doing the right thing. (I have 2 sons of my own) It does feel overwhelming at first--I promise that it does get a lot easier. I agree with the point you made about getting info. from real people who have actually been through this. I have a GI Dr. that I continue to see, but you can't beat the experiences of people who know what you're going through. Its a different kind or reassurance--and with Celiac, hard to find out there. I have gotten so much help here and I'm sure you will find the same is true for you. Ask anything anytime and feel free to PM me also. --Patti

[VydorScope]

We will be gluten free, at least as much as I possibly can do so. I am still so new at this I get overload trying to read on good/not good. But, it has to be done. He's been so happy, energetic, and sleeping MUCH better than he ever has ( never slept through the night until very recently.) I think that counts for something... At least, I hope it does!

Its very hard to get 100% gluten-free for full grown adults (or so ppl seem to think I am..) never mind childern. My son is teething (still, the last 4 molars) so EVERYTHING goes in his mouth. Its a nightmare chasing him around sometime LOL.

Good luck and ask lots o questions here. I can not post as often/mcuh as many do here, but fortunitly many of them are very very knowledgeable and nice!

[Guest nini]

I couldn't get my daughter's Dr.s to dx her with Celiac through the conventional way, they refused to do the complete panel and the ONE test they did was inconclusive, so her Dr. said she just had IBS (a three year old with IBS????!!!) Anyway, I convinced her pediatrician to support me in trying her on the diet since I had a positive dx of Celiac, and within DAYS I had an entirely new child... about a month or so later she swiped an OREO from a friend in daycare and within minutes was in the bathroom with painful diarrhea and they called me to come get her because she was vomiting and in pain... I WILL NEVER PUT MY CHILD ON GLUTEN AGAIN.

IMHO this positive dietary response is a much more conclusive and accurate test than any of the current testing out there that Dr.s have access to. But, the medical community doesn't make any money off of reccommending a diet change so why would they? (Yeah I am a little jaded when it comes to Dr's and pharmaceutical companies) I have to say though, I adore nurses. I think nurses are angels on earth, and I admire anyone who takes on that profession.

[Jnkmnky]

I totally understand, and didn't want to sound harsh with my reply~ I mean, IMO and experience, the info is where the masses are, from people who have been there done that, with regards to this stuff. I mean, my brother ( who has graves) asked his dr about this, since my son tested positive for the genes, and his answer was "you're too big to have it, no point in testing". Um, yea. He is 6'3 ( tall) and 130lbs(extremely thin).. OK.

We will be gluten free, at least as much as I possibly can do so. I am still so new at this I get overload trying to read on good/not good. But, it has to be done. He's been so happy, energetic, and sleeping MUCH better than he ever has ( never slept through the night until very recently.) I think that counts for something... At least, I hope it does!

A celiac has to be 100% gluten free in order to avoid the other auto-immune diseases, future intolerances, additional allergies... poor health.

It is possible to be 100% gluten free. It is essential for a celiac to be 100% gluten free. You and your spouse should have blood work done to determine if either one of you is also gluten intolerant..or at least, sensitive. Tests on young children are often inaccurate. The testing on you two might offer better results and help in identifying your child as a celiac.

[cherie012]

A celiac has to be 100% gluten free in order to avoid the other auto-immune diseases, future intolerances, additional allergies... poor health.

It is possible to be 100% gluten free. It is essential for a celiac to be 100% gluten free. You and your spouse should have blood work done to determine if either one of you is also gluten intolerant..or at least, sensitive. Tests on young children are often inaccurate. The testing on you two might offer better results and help in identifying your child as a celiac.

Mason is already dairy and soy sensitive, with soy being worse than dairy. What I mean by as much as I can is~ right now, I am still learning. I am having some troubles remembering all of the info, and seemingly OK things ~ like a box of cereal bars that SAY "GLUTEN FREE" on them, in fact, is a no no, because it has barley, oats, and another grain in there.

I am near certain I will be the one with a gluten sensitivity~ I have graves. My dad has lupus. My brother has graves. I've had "IBS" since I was 6........ I went to the dr a couple of years ago with unexplained diarrhea, that has been going on for a long time and was told to "stay away from fatty foods" since I had a high quantity of fecal fat..... I have been tested for lupus due to joint pains that migrate, and come and go.. That was negative, thankfully... So, I am tossing around the idea of being tested mysefl, but am kind of gunshy, LOL....

[taweavmo3]

Cherie, just curious what kind of cereal bars you are talking about? Usually, from my experience, anything that is actually labeled "gluten free" should NOT contain wheat, rye, barley or oats. However, something that just says "wheat free" can most certainly still contain rye, barley or oats. So far, my daughter hasn't been glutened with a food item that had the gluten-free label. So, maybe that will make your life a little bit easier if you have one less thing to worry about!

I completely see where you are coming from, I think most people do make mistakes in the beginning. My grocery bill was huge at first, b/c before I learned what mainstream foods were safe, I just bought everything that was actually labeled gluten free. Now, I know what name brands (like Kraft) will list any wheat, rye, barley or oats, and shopping is relatively easy and less expensive. You will get it, and much sooner than you probably think! You'll get used to those 800 numbers, and you can also check here for info, there is always someone who can help. Even our pedi GI told me the best info is from other celiacs, and this website.

Oh, and it is a blessing that your relatives saw Mason get sick. That is the one thing that convinced my husband how serious celiac is, and he quickly became my daughter's strongest advocate. Good luck, and keep us posted on your little boy's progress.

[Jnkmnky]

Mason is already dairy and soy sensitive, with soy being worse than dairy. What I mean by as much as I can is~ right now, I am still learning. I am having some troubles remembering all of the info, and seemingly OK things ~ like a box of cereal bars that SAY "GLUTEN FREE" on them, in fact, is a no no, because it has barley, oats, and another grain in there.

I am near certain I will be the one with a gluten sensitivity~ I have graves. My dad has lupus. My brother has graves. I've had "IBS" since I was 6........ I went to the dr a couple of years ago with unexplained diarrhea, that has been going on for a long time and was told to "stay away from fatty foods" since I had a high quantity of fecal fat..... I have been tested for lupus due to joint pains that migrate, and come and go.. That was negative, thankfully... So, I am tossing around the idea of being tested mysefl, but am kind of gunshy, LOL....

Sorry, but I can't imagine that happening at all. Now, if it said, "wheat free" - that would make sense. Nothing that has barley, is going to say "gluten free". You'll have to double check that box.

You certainly sound like a celiac who has gone far too long with no dx. This is what happens when your immune system is constantly turned on. I recommend the book, "Dangerous Grains" for additional information. You would be doing your extended family a great service by turning them on to the idea of Celiac. Many people who are suffering from some of those diseases you mentioned, find complete relief just by eliminating gluten from their diets. You can find yourself with an actual dx of LUPUS one day that cannot be fixed. However, if you begin to be gluten free today.... you could actually avoid that dx and live a totally different life than you've been living until now. You want better for your son, so really sit down and look into this gluten connection to his health.

[cherie012]

Sorry, but I can't imagine that happening at all. Now, if it said, "wheat free" - that would make sense. Nothing that has barley, is going to say "gluten free". You'll have to double check that box.

You certainly sound like a celiac who has gone far too long with no dx. This is what happens when your immune system is constantly turned on. I recommend the book, "Dangerous Grains" for additional information. You would be doing your extended family a great service by turning them on to the idea of Celiac. Many people who are suffering from some of those diseases you mentioned, find complete relief just by eliminating gluten from their diets. You can find yourself with an actual dx of LUPUS one day that cannot be fixed. However, if you begin to be gluten free today.... you could actually avoid that dx and live a totally different life than you've been living until now. You want better for your son, so really sit down and look into this gluten connection to his health.

Duh. Once again, you guys are correct. I rechecked the box, it states "wheat free" I equated it to "gluten free" Just shows you how lost I can be with regards to diet~ I equated "wheat free" with "gluten free" in my mind, and purchased them on my first gluten-free run. It was a couple of days later before I realized they still had other offenders in them, and removed them from my son's OK cabinent.

Another blessing of the day~ his GI is on board with this now~ He wants weekly updates of diet and stools~ I am SO relieved...

[key]

Hi Cherie,

I am an RN too. My doctors wrote Gluten intolerance on his chart. Which is good for insurance purposes anyway, but they diagnosed him just based on improved weight gain and just seeing him, they could tell he wasn't crabby and fussy constantly. He was engaging and happy! Anyway, my son's tests were all negative for celiac, because he was too young. Around a year. It isn't very accurate at that age. WE were out of town when he got so bad, so he never had a biopsy. I am happy he didn't have it, because they were going to do the colonoscopy too. It sounded horrible to me. He was already so sick. My kids have been through many surgeries and tests, but this one was just too much for me. Not the endoscopy, but colonoscopy. Anyway, you will learn more as time goes on. Try at first to stick to things that are naturally gluten free. We did use alot of soy, but we don't eat meat and he couldn't have dairy for a long time, so it was difficult. I still don't give him milk or cheese. He gets a little sour cream and hidden dairy sometimes.

You sound alot like me as far as your health goes. I would definitely get tested. I had the testing done after I was gluten free for 5 weeks and it was borderline for celiac, so I stayed gluten free. Definitely have the testing done first. But I had the joint pain alot before going gluten free.

Just thought I would share that I just made some awesome sugar cookies that are gluten free. THe idea overwhelmed me, but I figure I better start practicing for later. He has two older brothers and is only 21 months old right now, but eventually he would have wanted some. I took a picture of him eating his homemade sugar cookie with icing and sprinkles!! I am glowing with pride! We have been gluten free for about 7 months and it is still overwhelming at times, but gets MUCH better! YOu can do it.

Good luck,

Monica

[tarnalberry]

actually, even if it says "gluten free" do read the labels. there's been at least two items I've seen labeled gluten free that had oats - one was the Lame Advertisement energy bar that Kaiti posted about a few days back.

[Merika]

I mean, my brother ( who has graves) asked his dr about this, since my son tested positive for the genes, and his answer was "you're too big to have it, no point in testing". Um, yea. He is 6'3 ( tall) and 130lbs(extremely thin).. OK.

Oh my goodness, doctors!!! Too big? He's means too old right? Such Garbage! I was diagnosed at 32. My mother was diagnosed at 59. Many of us are asymptomatic or barely symptomatic as kids yet celiac slowly wears our bodies down until whammo we are in cr&ppy health. And then (if we're lucky) we get diagnosed as adults. Yes, adults!!!

Doctors can be sooo infuriating sometimes.

Merika