New Dx 2 Teens

[maximoo]

Hello: I am a 47 yo mother of 2. I'll start with my youngest. My 13 yo dghtr hasn't been growing for the past yr or so. She is 4'7 & 75 lbs. The primary sent her to an endocrinologist & for a bone age x-ray which turned out that she is equivalent to an avg 10 yr with plenty of room to grow. The endo ran 11 different blood tests-one being a celiac panel & her antibodies were high--33 (ranges 0-19 negative, 20-30 weak positive & over 30 strong positive) Everything else was normal except for vit D. She has been put on 1000 units a day. No anemia or other concerns. Never any bloating, diarrhea, or other GI problems. No headaches, no joint pains--nothing--just the slow growth, oh yeah & her hair hasn't been growing either & has been breaking. We then went to the pediatric GI & I demanded blood test be redone. This time her # was 42. He also ran an IBD test which is negative. He said that he wants to do the biopsy. I knew he was going to say that but I didn't expect him to talk about Crohns. He said that in the first 2 yrs of Crohns stunted growth could be a symptom & he wants the biopsy to check for it. I don't think this is a good reason to put her under anesthesia since she has no GI symptoms. I asked if I should put her on a gluten free diet & he replied not yet wait till the biopsy is done. I am not completely convinced that I should subject her to this procedure. She is a very nervous irrational paranoid child & she will be devastated if she went for an endoscopy.

So I ask you experienced parents for your opinion.

Now onto my son. He is 16 is 5'6, and about 115 lbs. He is growing but slowly. He didn't have a major growth spurt like many of his peers but rather a slower steady growth pattern. Anyway he was born prematurely at 30 wks gestation. He was dx'd with mild autism (pdd-nos at age 6.) He is high functioning & in all mainstream classes. Never had any GI symptoms whatsoever, but has always been a picky eater.

So after the 2 positive blood tests for my dghtr I decided to have him tested and he is positive too. His # is 19 (range 1-11 negative, 12-17 weak positive, over 17 high positive) I might be a little off on the #s but anyway primary said he is positive & should see the pediatric GI as well. I set the appt for later this mth. I remember reading different articles over the years that suggested a gluten free diet can help reduce autistic symptoms. I never took much stock in it. Anyway here we are now & I am rethinking that. I also do not think I should subject him to an endoscopy.

I decided that I should probably just start a gluten free diet for both of them & see how it goes.

Any opinions would be appreciated.

Now here is an interesting question the the pediatric GI asked me. He asked if I was Irish. I said well mostly (ancestors are pure blooded Irish) He said that 1 in 250-300 Irish people (& descendents) have celiac. Wow I thought. I've done a lot of reading on celiac lately & some studies suggest a high prevalence in the Irish. My mother died at age 54( over 20 yrs ago) from colon cancer. After reading so much I truly do wonder if she had celiac too, and I wonder if I have it as well. I will be tested soon. One article I read said that mthrs with celiac are @ 3x greater risk for having an autistic child. So maybe there is some truth to that.

Anybody else agree/disagree with this? If it is true then I feel every Irish person should probably be tested at an early age.

So as you all can see I have a lot on my mind. I do not believe everything I read & enjoy learning from other peoples experiences I eagerly await any & all opinions, ideas & suggestions.

Thank you.

[kareng]

I just want to make sure that you realize that biopsying for Chrohns is not the same as for Celiac. celiac is an endoscopy ( top part of intestines) Chrohns is the colonoscopy. If you put her thru it ( it isn't too bad, just the day of not eating) make sure you are getting it all done at once.

Something to consider- without an official diagnosis of Celiac, your kids have no chance of getting gluten free food in a college dorm situation or at the high school. Many colleges won't even try with the dx. Some will not make you pay for the food you can't eat.

[maximoo]

I just want to make sure that you realize that biopsying for Chrohns is not the same as for Celiac. celiac is an endoscopy ( top part of intestines) Chrohns is the colonoscopy. If you put her thru it ( it isn't too bad, just the day of not eating) make sure you are getting it all done at once.

Something to consider- without an official diagnosis of Celiac, your kids have no chance of getting gluten free food in a college dorm situation or at the high school. Many colleges won't even try with the dx. Some will not make you pay for the food you can't eat.

thx for the reply. GI doc said he just wanted an endoscopy not colonoscopy. He said he can tell if Crohns is present with the endoscopy. (?) And thx for the heads up about the school lunch situation. Another thing to deal with.

[mushroom]

thx for the reply. GI doc said he just wanted an endoscopy not colonoscopy. He said he can tell if Crohns is present with the endoscopy. (?)

Since Crohn's is a disease of the bowel and an upper endoscopy can reach only the top part of the smalll intestine, I am not sure quite how he is going to be able to see it

As far as having the endoscopies performed on both children, it really is not a particularly invasive or stressful test. I do not know if your children have fears of medical procedures, but this one is one they willl not even remember after it is done and it can provide useful information. They do not give general anesthesia, only a sedative and a medication that makes them forget it. However, if you feel strongly about this can you discuss with the GI putting them on the gluten free diet and having him agree that if they show positive response to the diet he will give them the diagnosis?

Your daughter's paranoia and anxiety (neurological manifestations of celiac are common) may well resolve on the gluten free diet. And your son's autism as you suspect may also respond well and his eating habits improve.

The other course of action you could take would be for all of you to have the genetic testing for celiac disease. If you were all positive that would be a strong indicator that it is celiac disease (not diagnostic, but persuasive )

[rosetapper23]

Okay, I'm going to go out on a limb here and disagree with my fellow posters. It doesn't mean that they're wrong--I just disagree. If you read a lot of posts on this forum, you'll see that there are two schools of thought on having the endoscopy. One of the top experts in the world, Dr. Alessio Fasano, has spoken at numerous conferences on this topic, and even he feels that an endoscopy is not always necessary. He has stated that the endoscopy frequently results in a false negative because of the inexperience of the doctor or pathologist, the fact that biopsies have been taken from areas that aren't damaged, or because the scope is not long enough to reach the damaged areas. He has said that as long as there are symptoms, a positive blood test, a positive genetic test (which you could have done rather than an invasive endoscopy), and the symptoms return once gluten is reintroduced, an endoscopy is not necessary and the person should be assumed to have celiac. Personally, I would suggest placing both children on a gluten-free diet. After a few months, reintroduce gluten--if they truly do have celiac, they may have a very bad response to its reintroduction. You'll then have your answer.

I think it's interesting that you describe your daughter's personality in such vivid terms--at the many conferences I've attended that included speakers who discussed children's behavior who cannot tolerate gluten, the marked personality traits of a child with celiac are just as you described. Young children are oftentimes described as anxious and clingy. Older children are oftentimes described as anxious, paranoid, ADHD, depressed, etc. My son became extremely anxious, depressed, and paranoid after his celiac was triggered at age 11. All of that resolved on a gluten-free diet when we discovered he had celiac at age 15. His growth had slowed after age 11--he fell from the 110% percentile to the 80% percentile. He was supposed to end up somewhere between 6'5" and 6'8"; but even though his growth increased on the gluten-free diet, he ended up closer to 6'4".

As for school lunches and food at colleges, that can vary. Personally, I would NEVER trust a school to serve decent, gluten-free food to my young child because I'd fear cross-contamination. Also, many children don't wish to appear "different." Had I known about my children's celiac when they were younger, I would have packed gluten-free food for them--even then, I didn't make them eat cafeteria food. When my daughter attended Stanford University, she was the restaurant manager at one of the dorms--luckily, the sole child with celiac that enrolled as a freshman that year was placed in my daughter's dorm. No "note" from a doctor had been required, and my daughter was able to accommodate the student's diet with very little trouble. My daughter, unfortunately, refuses to follow a gluten-free diet--she doesn't yet feel sick enough, she says, to change her whole life. My son, however, is 24 and must follow the diet closely, or he becomes extremely ill and breaks out in DH on his face, feet, and hands.

Quite frankly, I've been so disenchanted with doctors because of the long road to my diagnosis, I don't trust them to interpret the tests properly or to understand that an endoscopy doesn't necessarily work for a diagnosis. Do what you feel would be in the best interest of your children.

[mushroom]

Okay, I'm going to go out on a limb here and disagree with my fellow posters.

Quite frankly, I've been so disenchanted with doctors because of the long road to my diagnosis, I don't trust them to interpret the tests properly or to understand that an endoscopy doesn't necessarily work for a diagnosis. Do what you feel would be in the best interest of your children.

I don't think you and I are in any disagreement here. What is best for the child is definitely the goal. If getting the diagnosis is the best thing for the child I was suggesting ways she could get it. You must surely know that I have no more love for doctors and their procedures than you do

[Mizzo]

Here is my $.02.

An endoscopy is NOT very invasive my 7 yr old had it done and It was harder on me than her. BTW my mother had it done as an adult and again, not invasive.

We only got the dx note because of the Endo. and we NEEDED that note .

I DO NOT allow the school to feed my child because I don't trust the cross contamination factor BUT because of the DX note i am able to get my DD's homemade lunches heated up in the teachers lounge. Giving us twice as many lunch options.

NOTE: school cafeteria's cannot heat up food brought in by a student because it is against health code.

Also, as I found out recently when traveling you may need a note to take gluten-free food. You can still NOT take liquids, gels, fruits, veggies and cured meat ( they asked me about ham and salami I do not know why?) but I was told by my travel agent

to keep the note handy so they did not take my boxed product or premade frozen foods. I took the note and had it ready and needed it at customs in the caribbean.

If you can get an endo done quickly I would do it. Better to have it done now then to go gluten-free and have to go back on gluten for 3 MONTHS to have the test later if you needed to.

Good luck with whatever you do.

[cahill]

Hello: I am a 47 yo mother of 2. I'll start with my youngest. My 13 yo dghtr hasn't been growing for the past yr or so. She is 4'7 & 75 lbs. The primary sent her to an endocrinologist & for a bone age x-ray which turned out that she is equivalent to an avg 10 yr with plenty of room to grow. The endo ran 11 different blood tests-one being a celiac panel & her antibodies were high--33 (ranges 0-19 negative, 20-30 weak positive & over 30 strong positive) Everything else was normal except for vit D. She has been put on 1000 units a day. No anemia or other concerns. Never any bloating, diarrhea, or other GI problems. No headaches, no joint pains--nothing--just the slow growth, oh yeah & her hair hasn't been growing either & has been breaking. We then went to the pediatric GI & I demanded blood test be redone. This time her # was 42. He also ran an IBD test which is negative. He said that he wants to do the biopsy. I knew he was going to say that but I didn't expect him to talk about Crohns. He said that in the first 2 yrs of Crohns stunted growth could be a symptom & he wants the biopsy to check for it. I don't think this is a good reason to put her under anesthesia since she has no GI symptoms. I asked if I should put her on a gluten free diet & he replied not yet wait till the biopsy is done. I am not completely convinced that I should subject her to this procedure. She is a very nervous irrational paranoid child & she will be devastated if she went for an endoscopy.

So I ask you experienced parents for your opinion.

Now onto my son. He is 16 is 5'6, and about 115 lbs. He is growing but slowly. He didn't have a major growth spurt like many of his peers but rather a slower steady growth pattern. Anyway he was born prematurely at 30 wks gestation. He was dx'd with mild autism (pdd-nos at age 6.) He is high functioning & in all mainstream classes. Never had any GI symptoms whatsoever, but has always been a picky eater.

So after the 2 positive blood tests for my dghtr I decided to have him tested and he is positive too. His # is 19 (range 1-11 negative, 12-17 weak positive, over 17 high positive) I might be a little off on the #s but anyway primary said he is positive & should see the pediatric GI as well. I set the appt for later this mth. I remember reading different articles over the years that suggested a gluten free diet can help reduce autistic symptoms. I never took much stock in it. Anyway here we are now & I am rethinking that. I also do not think I should subject him to an endoscopy.

I decided that I should probably just start a gluten free diet for both of them & see how it goes.

Any opinions would be appreciated.

Now here is an interesting question the the pediatric GI asked me. He asked if I was Irish. I said well mostly (ancestors are pure blooded Irish) He said that 1 in 250-300 Irish people (& descendents) have celiac. Wow I thought. I've done a lot of reading on celiac lately & some studies suggest a high prevalence in the Irish. My mother died at age 54( over 20 yrs ago) from colon cancer. After reading so much I truly do wonder if she had celiac too, and I wonder if I have it as well. I will be tested soon. One article I read said that mthrs with celiac are @ 3x greater risk for having an autistic child. So maybe there is some truth to that.

Anybody else agree/disagree with this? If it is true then I feel every Irish person should probably be tested at an early age.

So as you all can see I have a lot on my mind. I do not believe everything I read & enjoy learning from other peoples experiences I eagerly await any & all opinions, ideas & suggestions.

Thank you.

You say you will be tested soon, endoscopy or blood test or both???

If you test positive then genetic testing is a very good option

[rosetapper23]

As for a "doctor's note," when needed, I have used my son's blood tests. People don't know that an endoscopy is considered the "gold standard." You have the positive blood tests; therefore, you have your proof for the need to take gluten-free food with you when flying on an airline. I don't know if schools need more verification than that.

[kareng]

You say you will be tested soon, endoscopy or blood test or both???

If you test positive then genetic testing is a very good option

I don't think you need genetic testing if you are positive for Celiac. Its $200+ that most insurance won't pay for. I don't need genetic testing to prove I have pale skin & freckles.

Usually genetic testing is done for relatives that have a negaive blood test. This helps them to know if they need to keep testing every few years.

Open Original Shared Link

Sorry. That sounds harsh. Just want to save her a few hundred bucks.

[srall]

I am not as knowledgeable as the other posters...a lot of this I am figuring out on my own. I seem to have done much more research than our doctors. Just a couple of interesting things. I do have a friend who is Irish, who has celiac disease and an autistic child. I haven't heard those specific stats before, but I do know one person who fits the bill.

My own daughter is tiny, and has only started growing and catching up to her classmates since going gluten free last fall. She also has massive anxiety and is extremely clingy when she's eating something she's not supposed to, (which also includes dairy and corn.) I also notice if we are lax about vitamins, esp vitamin B the anxiety and tantrums creep back. Her hair is also a mess...doesn't grow and breaks off. I'm still waiting for this to resolve.

As far as eating in the schools, I am with the other poster about never trusting the schools to feed her. Especially with the corn and dairy allergies. In fact I'm bracing myself for the fact that she may have to live with us while she attends college, or will have to have her own apartment rather than live in the dorms. I can't imagine spending all that money for school, and then having her get glutened before an exam, or deal with that level of anxiety when also trying to deal with classes and living away from home for the first time.

[maximoo]

@mizzo--well I think I'll start with a blood test. I don't think I have any symptoms tho sporatically I have intestinal trouble. could be a sign could not. Idk. Thanks for the traveling tip!

@rosetapper My dghtr growth curve fell form the 10th-25th pctile to off the chart. That is what compelled the primary to send her to the endocrinologist.

To everyone: I didn't realize I would need a Dr/s note for those situations. I will see if Dr will give me a note w/o the endoscope. Doesn't hurt to try.

I did not know that paranoia/anxiety is a symptoms as well. I always say she is a 'drama queen" but I'm sure she can't help some of it. That would explain a lot however my husband has some paranoia too. I think he should be tested as well. `He is 56 yo No signs or symptoms that I could put my finger on tho he does have some autistic tendencies but was never dx'd. As I go thru this process of learning I'm sure many things will become clear for me & us as a family.

Keep the info & suggestions, ideas coming I have so much to learn!

[cahill]

I don't think you need genetic testing if you are positive for Celiac. Its $200+ that most insurance won't pay for. I don't need genetic testing to prove I have pale skin & freckles.

Usually genetic testing is done for relatives that have a negaive blood test. This helps them to know if they need to keep testing every few years.

Open Original Shared Link

Sorry. That sounds harsh. Just want to save her a few hundred bucks.

sorry, I guess I though if the OP tested positive that the genetic testing would be a good option for the children.

[kareng]

sorry, I guess I though if the OP tested positive that the genetic testing would be a good option for the children.

This gets so confusing sometimes....whosit tested positive, what sit is negative...

I think the kids are positive. If she & hub test negative, the genetic test might be an option for them. Just wiegh the risks of having a positive genetic test out there. Probably the fact that I have had my boys tested for the antibodies is enough to exclude them from most branches of the military. Hopefully, it doesn't mess up the oldest trying to get his own health insurance. He is going to college out of state and if he can establish residency, it will save us a lot for the last 2-3 years.

On a happy note Hub is cooking BBQ sauce burgers on the grill - one of my favorites!

[cahill]

This gets so confusing sometimes....whosit tested positive, what sit is negative...

I think the kids are positive. If she & hub test negative, the genetic test might be an option for them. Just wiegh the risks of having a positive genetic test out there. Probably the fact that I have had my boys tested for the antibodies is enough to exclude them from most branches of the military. Hopefully, it doesn't mess up the oldest trying to get his own health insurance. He is going to college out of state and if he can establish residency, it will save us a lot for the last 2-3 years.

On a happy note Hub is cooking BBQ sauce burgers on the grill - one of my favorites!

I get confused some times and sometimes I am not as clear as I could be with what I am trying to say

Burgers on the grill , yummy

[maximoo]

Ok I never thought of the military angle (well I am glad for that) or the insurance and that they might be excluded or have to pay higher premiums when the time comes. I am learning so much today!

[sb2178]

On the other hand, having the baseline endoscopy can show you how much damage has been done. If they don't recover or respond well to treatment, it can be useful to be able to compare that to repeat biopsies. It's a little old school, and most people respond well, but might be nice to have as a back-up. I'm sort of in favor, as Crohn's can show up as a false positive in celiac testing very very rarely. While they can overlap, if celiac shows up in biopsy, it's almost definitely not Crohn's.

It's nowhere near as invasive as a colonscopy. Just a 12 hour fast, and a slightly sore throat afterwards (great excuse for chicken soup, rice pudding, and ice cream).

I agree the genetics in the kids are pointless. They'll come back positive. Parents, might be worth it, so you know who to keep an eye on. Adults are often "silent" or lacking obvious symptoms, so both you and you husband should have the screening bloods drawn.

The old school thought was that the Irish did have more celiac disease, but that seems to be changing as testing becomes more widespread. Maybe the recent elevation in rates showed up there first? Or they found more one day, and then the whole "you find what you're looking for" aspect kicked in. The current stats are around 1% in European and Euro descendents. Parts of Asia are lower, but Africa seems similar. I haven't read anything about South America.

BTW, Crohn's can be in any part of the intestine. It's just usually the worst in the later part of the small intestines or part of the colon.

[shadowicewolf]

Hello: I am a 47 yo mother of 2. I'll start with my youngest. My 13 yo dghtr hasn't been growing for the past yr or so. She is 4'7 & 75 lbs. The primary sent her to an endocrinologist & for a bone age x-ray which turned out that she is equivalent to an avg 10 yr with plenty of room to grow. The endo ran 11 different blood tests-one being a celiac panel & her antibodies were high--33 (ranges 0-19 negative, 20-30 weak positive & over 30 strong positive) Everything else was normal except for vit D. She has been put on 1000 units a day. No anemia or other concerns. Never any bloating, diarrhea, or other GI problems. No headaches, no joint pains--nothing--just the slow growth, oh yeah & her hair hasn't been growing either & has been breaking. We then went to the pediatric GI & I demanded blood test be redone. This time her # was 42. He also ran an IBD test which is negative. He said that he wants to do the biopsy. I knew he was going to say that but I didn't expect him to talk about Crohns. He said that in the first 2 yrs of Crohns stunted growth could be a symptom & he wants the biopsy to check for it. I don't think this is a good reason to put her under anesthesia since she has no GI symptoms. I asked if I should put her on a gluten free diet & he replied not yet wait till the biopsy is done. I am not completely convinced that I should subject her to this procedure. She is a very nervous irrational paranoid child & she will be devastated if she went for an endoscopy.

So I ask you experienced parents for your opinion.

Now onto my son. He is 16 is 5'6, and about 115 lbs. He is growing but slowly. He didn't have a major growth spurt like many of his peers but rather a slower steady growth pattern. Anyway he was born prematurely at 30 wks gestation. He was dx'd with mild autism (pdd-nos at age 6.) He is high functioning & in all mainstream classes. Never had any GI symptoms whatsoever, but has always been a picky eater.

So after the 2 positive blood tests for my dghtr I decided to have him tested and he is positive too. His # is 19 (range 1-11 negative, 12-17 weak positive, over 17 high positive) I might be a little off on the #s but anyway primary said he is positive & should see the pediatric GI as well. I set the appt for later this mth. I remember reading different articles over the years that suggested a gluten free diet can help reduce autistic symptoms. I never took much stock in it. Anyway here we are now & I am rethinking that. I also do not think I should subject him to an endoscopy.

I decided that I should probably just start a gluten free diet for both of them & see how it goes.

Any opinions would be appreciated.

Now here is an interesting question the the pediatric GI asked me. He asked if I was Irish. I said well mostly (ancestors are pure blooded Irish) He said that 1 in 250-300 Irish people (& descendents) have celiac. Wow I thought. I've done a lot of reading on celiac lately & some studies suggest a high prevalence in the Irish. My mother died at age 54( over 20 yrs ago) from colon cancer. After reading so much I truly do wonder if she had celiac too, and I wonder if I have it as well. I will be tested soon. One article I read said that mthrs with celiac are @ 3x greater risk for having an autistic child. So maybe there is some truth to that.

Anybody else agree/disagree with this? If it is true then I feel every Irish person should probably be tested at an early age.

So as you all can see I have a lot on my mind. I do not believe everything I read & enjoy learning from other peoples experiences I eagerly await any & all opinions, ideas & suggestions.

Thank you.

I'd say yes she has it due to the fact of the blood test among other things. I had a high positive (39) and am going to (shiver) get an endoscopy. However, as far as i'm concerned, i have it and have adjusted my deit accordingly. It has helped with the GI issues but blah i still have some other problems (this is 2 weeks free of gluten).

I also wanted to mention that an endo can give a false negative because well the small intestans are like 20 feet long and looking for damage is slightly hard.

I have aspergers and also have heard of that connection and the fact that going gluten free 'helps' somewhat. I hope so.

Anyway, i understand what you are going through completely. You are not alone in this. Its just so hard. Chin up! There are much worse things in the world, this is nothing more than a speed bump in the long run

[maximoo]

OP here. I've been reading many other threads & what I noticed was some posters saying that once they went gluten free they became sensitive/more sensitive to gluten when it was accidently ingested. Since my kids are not having an GI problems I wonder if going completely gluten free is the correct thing to do. Maybe just cutting gluten way down while still allowing a little to go thru would be better? I wouldn't want to go 100% gluten free (which is hard to do at first anyway) only to make things worse in the long run by causing new symptoms if they come into contact with gluten in any form. I mean I've seen people writing things like they need separate cookware, utensils, & that they can get sick just by kissing someone who just had a donut, etc. I realize these are the more severe cases, and I hope my kids would never get to a stage like that. I'm not even sure if they could as those people's cases were severe to begin with (?) Idk, its all new to me. For right now I want my dghtr to grow so I think going gluten free will be a tremendous help but does it have to be 100% or would gluten "lite" be sufficient and good for her in the long run (?)

Please keep the comments & ideas coming.

Ps I can seem to make the font large. Can somebody help?

[srall]

OP here. I've been reading many other threads & what I noticed was some posters saying that once they went gluten free they became sensitive/more sensitive to gluten when it was accidently ingested. Since my kids are not having an GI problems I wonder if going completely gluten free is the correct thing to do. Maybe just cutting gluten way down while still allowing a little to go thru would be better? I wouldn't want to go 100% gluten free (which is hard to do at first anyway) only to make things worse in the long run by causing new symptoms if they come into contact with gluten in any form. I mean I've seen people writing things like they need separate cookware, utensils, & that they can get sick just by kissing someone who just had a donut, etc. I realize these are the more severe cases, and I hope my kids would never get to a stage like that. I'm not even sure if they could as those people's cases were severe to begin with (?) Idk, its all new to me. For right now I want my dghtr to grow so I think going gluten free will be a tremendous help but does it have to be 100% or would gluten "lite" be sufficient and good for her in the long run (?)

Please keep the comments & ideas coming.

Ps I can seem to make the font large. Can somebody help?

I've always heard that if you are not sensitive to gluten and you don't eat it for even a few years, and then reintroduce it, you won't react. If you eliminate gluten, and then are accidentally glutened and have a bad response, that means you are gluten intolerant and gluten is damaging your body. I do think for some people there are benefits to going "gluten lite," My husband is almost entirely gluten free at home, but I know he eats some outside the house. He has lost some weight and is, well...less gassy. But for my daughter and myself any amount of gluten is evil. And the fact that being off gluten has made us have even more serious reactions just proves to me that we should not have been eating it in the first place. I think it's too damaging to the body to keep eating it (if you are celiac or gluten intolerant) and being extremely diligent about cc is just your lot in life. But it beats feeling like crap (or worse) every day.

[kareng]

OP here. I've been reading many other threads & what I noticed was some posters saying that once they went gluten free they became sensitive/more sensitive to gluten when it was accidently ingested. Since my kids are not having an GI problems I wonder if going completely gluten free is the correct thing to do. Maybe just cutting gluten way down while still allowing a little to go thru would be better? I wouldn't want to go 100% gluten free (which is hard to do at first anyway) only to make things worse in the long run by causing new symptoms if they come into contact with gluten in any form. I mean I've seen people writing things like they need separate cookware, utensils, & that they can get sick just by kissing someone who just had a donut, etc. I realize these are the more severe cases, and I hope my kids would never get to a stage like that. I'm not even sure if they could as those people's cases were severe to begin with (?) Idk, its all new to me. For right now I want my dghtr to grow so I think going gluten free will be a tremendous help but does it have to be 100% or would gluten "lite" be sufficient and good for her in the long run (?)

It's an autoimmune disease. A little will still cause your body to make antibodies and start attacking itself. Your kids will continue to be malnourished and have stunted growth.

I am being "mean" because my son has a friend whose mom never had her be completely gluten-free. Her mom is almost 6 foot tall. The daughter isn't 5 foot. Until she decided at 17 to be completely gluten-free, she felt awful all the time and had some mental health issues. It's too late for her to grow but the kids don't say she is " crazy" anymore. Her bones will continue to be full of holes from the calcium that couldn't be absorbed. If i had known this girl & her situatuin sooner, i would have reported her mom for child abuse/ medical neglect.

Your kids have a very few years at their ages to grow and fill in their bones. Please help them to become healthy adults.

[maximoo]

@ Srall so you are saying that if you weren't sensitive to gluten b4( going gluten free) then if you accidently ingest some, or purposely eat some then you won't have new reactions? . You were sensitive b4 but didn't realize it, but realized how sensitive you were after you went gluten-free & then ingested some gluten? So in yr case all gluten is evil but not in yr husbands b/c he was never as sensitive & you/dghtr? If he is eating gluten outside the home what does his blood test show? is there any damage to his intestines?

@ Karen I don't think ur being mean. I came here for knowledge & will give all comments consideration. I am new at this.

Well as far as I know there are no holes in my kids bones. Their calcium levels were normal (tho I thought 4 sure my dghtrs would be low) The only deficiency found was vit. D, not iron or anything else. Vit D deficiency is a very common in the general population. I am aware that any gluten can cause damage as I have read that several different times from several different sources. But nothing is an absolute in the human body (A recent story of a 3 yo missing part of his brain is learning & growing normally which baffles top Drs around the world!) I am an avid watcher of Mystery DX & and the human body is extremely complicated & no two people are alike. I was merely thinking if "gluten lite" is an option based on others people experience of becoming so gluten sensitive that they need different cookware. Idk if it is, but again no two people are alike so I need to find out but I guess the only way to find out is to try it & have my dghtrs blood retested to see what her #s are. But if that's gonna keep her short then I won't go that way. Its a learning process and I am the pupil.

Anybody else out there have any experience with "gluten lite? Does it help? or is the notion of "gluten lite" ridiculous?

[shadowicewolf]

You cannot just go 'lite' with Celiac. Gluten will completely and utterly destroy your small intestans over time to the point where the vili will not come back leaving the body melnourished and struggleing to survive.

After going off it, reactions to gluten can be worse. It can also 'show up' during a blood test due to the fact that the antibodies would once again be present.

Honestly, i wouldn't want to risk the health of my intestans over a 'lite' diet.

[mushroom]

Vitamin D is even more important than (or just as important as) calcium in maintaining bone structure. Lack of D is usually what causes osteoporosis.

[suziq0805]

OP here. I've been reading many other threads & what I noticed was some posters saying that once they went gluten free they became sensitive/more sensitive to gluten when it was accidently ingested. Since my kids are not having an GI problems I wonder if going completely gluten free is the correct thing to do. Maybe just cutting gluten way down while still allowing a little to go thru would be better? I wouldn't want to go 100% gluten free (which is hard to do at first anyway) only to make things worse in the long run by causing new symptoms if they come into contact with gluten in any form. I mean I've seen people writing things like they need separate cookware, utensils, & that they can get sick just by kissing someone who just had a donut, etc. I realize these are the more severe cases, and I hope my kids would never get to a stage like that. I'm not even sure if they could as those people's cases were severe to begin with (?) Idk, its all new to me. For right now I want my dghtr to grow so I think going gluten free will be a tremendous help but does it have to be 100% or would gluten "lite" be sufficient and good for her in the long run (?)

Please keep the comments & ideas coming.

Ps I can seem to make the font large. Can somebody help?

Someone that has celiac disease must be on a gluten-free diet or damage will be done to the body (whether or not they experience symptoms). In my understanding someone with non-celiac gluten intolerance could eat gluten and

may experience discomfort but no actual damage is occurring. Going gluten free is hard at first but you get used to making sure food is cut on a separate cutting board, separate utensils are used in cooking and so on. If you do not do this you are putting your children at risk for many complications (conditions associated with vitamin deficinies, increased cancer risks). Like a previous poster said, this is an auto-immune disease. So ANY amount of gluten will cause damage because once gluten enters the body, the body produces antibodies and the damage begins. Some people have symptoms of this happening and others don't. But regardless of the presence of symptoms, damage is still being done. At some point they are bound to accidentally get "glutened". No parent likes to see their kid sick when that happens but maybe it could be a good reminder of why they can't eat gluten. If they are on a strict gluten free diet and understand/comply with it when you are not with them they shouldn't get accidentally "glutened" much at all. And I think it's better to risk a bad reaction to gluten than to put them at a higher chance of developing serious complications or cancer.