New Dx 2 Teens

[srall]

@ 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?

Assuming that my husband is indeed not sensitive at all to gluten (I have my doubts)...then yes. He could go years without eating gluten and then reintroduce without any issues. He's never had any blood tests or endoscopy because he does not seem to have a problem with gluten. However, I think a lot of people probably are eating way more gluten than is healthy, even if they aren't gluten intolerant. So, in other words, gluten doesn't make my husband ill, but it definitely adds weight to him. The reason I'm not convinced he's not a little gluten intolerant is that he's also less gassy "gluten-lite".

I am 100% agreeing with other posters that gluten-lite is not an option for someone who is celiac or gluten intolerant. And the problem with a gluten intolerant diagnoses is that it is usually self diagnosed through a person doing his/her own elimination diet, which is what happened with myself, my daughter, and actually my mother as well. The blood tests weren't helpful at all in our case because we tested negative for celiac. However if I were to show you before and after pictures of my daughter, there would be no doubt.

Based on the symptoms you describe with your children, I think you should definitely start with the blood test, and if that's inconclusive I'd probably still try an elimination diet with a food journal. I know it sounds daunting, but it honestly took less that two weeks to peg the culprits in my daughter's diet. And as I said before, the difference in this child is night and day.

[sb2178]

Lots to respond to...

1) Calcium levels in the blood do not really reflect done density, which is what you care about in the long term. The body stabilizes blood calcium levels by taking calcium from the bones when it isn't absorbing it through the intestines. I, for example, lost almost 6% of my bone density in a little over the year before diagnosis. That was a total accident of discovery, as I would have never found out if I had not been working in research and training people how to do bone density scans. At my age, I should be losing NONE.

2) Gluten-lite is really only useful for people at risk of developing celiac/gluten intolerance. In that case, it may delay or prevent the onset of the immune process. Once you've got those antibodies flying around in your blood, you're stuck. For life.

3) They have symptoms. It may not be full-on bloody D, but there are health problems which could resolve or improve on the diet. It's also a progressive disease, so their health will almost definitely deteriorate. GI symptoms only could actually be an improvement, from what I'm reading.

4) Contamination happens, but you can avoid almost all of it with some practice. It will help them learn to avoid it, the way that being sick from eating poisonous plants teaches people to not eat them.

[Roda]

From what I can gather from your original post is that both of your kids have had positive bloodwork. There is usually not false positives with these but a lot of false negatives. If you are not done with testing, wanting to get them the upper scope and biopsy, then leave them eating a regular gluten filled diet until it is over. If you are done with testing then I would definately put them gluten free, not just gluten light. With the positive blood work I would say they are celiac. Even if they don't show any reactions there is damage still going on in their bodies. Maybe by putting them gluten free now will help stave off further autoimmune diseases down the road. I almost wish my oldest son (10 yrs old and very small) would show positive on his blood work. He has been tested three times and always negative. I do suspect he has gluten issues and my husband and I are talking about what route we are going to take with him, ie biopy. It is harder for my husband to accept him needing to be gluten free without some kind of proof. He is coming around and I suspect sometime this summer, whatever route we decide, he will be at the very least doing a trial of gluten free. Be glad you have found out now.

[Roda]

Check out this thread.. it might help you especially GFinDC's post.

[Cara in Boston]

Both your kids have positive blood tests. It is likely that they have it.

My son (6) had "unusual" results on his blood tests and no gut symptoms of celiac. He is a kid that requires about 4 adults to restrain him to take a blood test. I was unsure about the endoscopy but the doctor talked me into it. He had an endoscopy and it was positive - so I am very glad we went ahead and got a definite answer.

My husband took him on the day of the procedure because I was home with my other child. When they came back, he said he had a GREAT time and he was all smiles. It was done at Children's Hospital so they were very good at keeping him busy and entertained.

I had one too (after positive blood tests) and it was really no big deal.

The reason we went ahead with my son's endoscopy was that the diet change is for LIFE and if I could get a diagnosis now, we never have to question whether or not we are doing the right thing. He never has to undergo a "gluten challenge". We have documentation for schools, camps, college, military, etc. His medical record will alert future doctors to monitor him for other, related autoimmune disorders, etc.

On a side note, he had also been tested (observed?) several times for a possible spectrum disorder. He has/had some of the behaviors typical of a child with autism (hand flapping, lack of eye contact, hyper sensitive to temp, taste, smell, sound;) although he was never diagnosed. Now that he has been gluten free, many (if not all) of those behaviors have stopped or decreased greatly. I think there is a link for sure.

We are Irish too. Good luck with this. The testing process can be long and frustrating. Ours took about 6 months.

Cara

[maximoo]

Thank you all for your replies & support. I am now convinced that gluten lite would not help in any way & most likely no matter how hard we try mistakes will be made & some gluten will slip thru here & there. I am still learning & getting ready to gear up to have kids go gluten-free. Dr. said not to until endoscope was done, but I am slowly having them try new gluten-free items so when the time comes they'll already have new things to eat. I am still undecided if I should let them have endoscope.

I hate all of this but there are so many worse disorders out there. This is doable. And there is still so much to learn.

[shadowicewolf]

Thank you all for your replies & support. I am now convinced that gluten lite would not help in any way & most likely no matter how hard we try mistakes will be made & some gluten will slip thru here & there. I am still learning & getting ready to gear up to have kids go gluten-free. Dr. said not to until endoscope was done, but I am slowly having them try new gluten-free items so when the time comes they'll already have new things to eat. I am still undecided if I should let them have endoscope.

I hate all of this but there are so many worse disorders out there. This is doable. And there is still so much to learn.

I keep telling myself it could be worse

Keep going!

[maximoo]

Hey Gang: I took DS to GI today for 1st visit (he has high antibodies) and just like with my DD he recommends the endoscope. I asked how many samples do you take and he said 4. Then I asked what length of intestines do you take them from & he said about a 6 in space near the very top. I said well theres over 20 feet why do you take just from the top area. He said the endoscope doesn't go that far around all the curves etc and its not part of the recommendation & it would require a different procedure to test the rest of the gut. OK fair enough but then I said theres still a 20-30% chance of a false negative. He didn't have much of a reply. I said well the only way to manage it is to go gluten free so whether you do endo or not the result will be the need to go gluten-free. He agreed. I asked him for a dx (note) he refused saying he can't w/o the endoscope. He has to follow the standards. I wanted to slap him into the middle of next week! He didn't even say well if you go gluten-free then later decide to do the endo you have to put the kids back on gluten. i wonder how many parents he hasn't told this & then the kid's endo is all messed up(false negative) b/c he didn't say to regluten them. And for those kids that get really sick why would you make your kid sick just to obey their stupid gold standards? Its all such a bunch of bull! QUACKERY if you ask me!

I actually made a appt in 6 mths & he gave me the orders for kids to have a repeat blood test . But really I am thinking what's the point of seeing him? The primary can chk their results every 6 mths.

On a side note I just had my bloods drawn on Sat so I will know soon if I am the culprit of all this. For me I might do the endo & I think theres more of a chance I'd show positive results (not necessarily I know) depends on when it got activated in me (if I have it that is)

Well just wanted to vent a little. I haven't officially had them start gluten-free yet but will soon after I get my results then we might all need to go gluten-free.

I

[bbuster]

My son was diagnosed with Celiac at age 10. He had no GI symptoms, other than he threw up easily when he was nervous. The main thing that prompted me to get him tested was short stature - he was less than 1 percentile for height, and we had ben through about every other possible test.

His bloodwork was positive for Celiac (not super high, but definitely positive) and he did have the endoscopy to confirm Celiac diagnosis. I don't know how nervous he was about the procedure (his dad took him), but I think less nervous than I was. Afterward, he acted like it was no big deal.

He was also 2-3 years behind in bone age, even though his growth hormone levels were normal.

[maximoo]

Hi Buster: Did your DS start to grow after going gluten-free? How tall is he now? Is he the height he should be? Did you ever repeat the bone scan?

[bbuster]

Hi Buster: Did your DS start to grow after going gluten-free? How tall is he now? Is he the height he should be? Did you ever repeat the bone scan?

He did start to grow, but only went from less than 1 inch per year to almost 2 inches per year. He was so far behind, that would not catch him up. We gave it a year after getting his antibodies negative with the gluten-free diet (that took about 6 months). After that we consulted with an endocrinologist, and after a panel of tests she (endo Dr.) said he was a candidate for growth hormones. We decided to do it. He grew 4 inches year 1, 3.5 inches yr 2, 3 inches yr 3 (diminishing rates over time are normal). Without GH his expected height was barely over 5 ft, although his predicted height just based on the height of his mom and dad was 5'9". He just turned 17 and is a little over 5'5" and still growing. Just had a bone scan recently and he is only 6-9 months bone age behind chronological age. He is still doing the GH (shots) and he might stretch out another 1-3 inches at best before he stops growing, but honestly he is around 8-9 percentile now so he is in the normal range and it has helped his self-esteem so much. If you want more info you can send me a message with your questions.

[bbuster]

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.

My son didn't have GI symptoms before diagnosis, and he still does not. That's good and bad. Good in that it's a little more convenient, but bad in that you don't get feedback when he accidentally eats gluten. It takes a long time to learn and incorporate the diet. Mistakes will be made along the way. (I think that's why it took a good 6 months to get his bloodwork from positive to equivocal to negative.)

He does not intentionally eat gluten, but there have been a few times we found out after the fact that he ate something with gluten. I do think there are degrees of tolerance - not saying that any Celiac should try to eat a little gluten, but I think some are more sensitive than others. After getting his bloodwork negative it has stayed there - we tested every 6 months at first, and after 3 negatives dropped back to once per year, and it has stayed negative and his overall health is good.

[maximoo]

OP here.

Good news DD has grown 1 inch since Mar! She is now 4'8 YAY! Feb was when we saw an endocrinologist & she ordered 11 blood tests including a celiac panel & vit d levels. Well I've been given her the extra vit D (and milkshakes 4/5 dys a wk on avg ) since I got the results in Mar & I want to say that's when she started to grow again. She has mostly been gluten-free for the past 2 wks but I know we aren't perfect. She can't wait to reach a full 5 feet and I can see her getting there (and beyond) We are thrilled!

[maximoo]

I measured DD again b/c I swear I can see her growing. She grew another 1/2 in since I last posted. She is now 4'8.5 She sleeps an awful lot & is taking her vitamins everyday. And DS has gained 5 lbs recently. Woo hoo!

[cahill]

I measured DD again b/c I swear I can see her growing. She grew another 1/2 in since I last posted. She is now 4'8.5 She sleeps an awful lot & is taking her vitamins everyday. And DS has gained 5 lbs recently. Woo hoo!

she may be sleeping a lot because she is growing so fast.

My nefuew grew 6 inchs over one summer and all he did was sleep. When my sister took him to the doc the doc said he was sleeping so much because that is when he was growing

[cyberprof]

I measured DD again b/c I swear I can see her growing. She grew another 1/2 in since I last posted. She is now 4'8.5 She sleeps an awful lot & is taking her vitamins everyday. And DS has gained 5 lbs recently. Woo hoo!

That's cool. Congratulations! My son was 15 with a bone age of 12.5 in 2008. 5'3" and 96 pounds and sick all the time. (and...a secret - zero testosterone so no puberty at an age when most boys are done he hates it when I tell people this)

He is never sick now and is over 6'2" and 150 pounds. He was happy to go gluten-free in the hopes that he would grow and it paid off. We did not give him growth hormone because he started to grow ~6 months after gluten-free.

You might want to have your kids take capsuls of Carlson's Cod Live Oil: I read a lot of studies that Vitamins A & D was very importatant for growth and in some cases it was as effective as growth hormone. The milk might not be enough while her GI tract heals.

[maximoo]

They both take vit D supplements in addition to multi vitamin. DD cannot swallow capsules but thanks for the idea. I've tried them in the past & I get a fishy repeating flavor when burping Disgusting!

Some of the gluten-free items have alot more calories than non gluten-free. for ex Udi bagels. I think that's partly why DS gained 5 lbs.

[cyberprof]

They both take vit D supplements in addition to multi vitamin. DD cannot swallow capsules but thanks for the idea. I've tried them in the past & I get a fishy repeating flavor when burping Disgusting!

Some of the gluten-free items have alot more calories than non gluten-free. for ex Udi bagels. I think that's partly why DS gained 5 lbs.

Hmmm... I never get the bad repeating flavor, luckily.

Just FYI, the Carlson's oil comes as both capsul and oil. My son never balked at the lemon flavor.

Glad your kids are getting healthy!

[maximoo]

Measured DD again & now she is 4'9! She is growing 1/2 inch per month! woohoo! gluten-free diet really works.

[cyberprof]

Measured DD again & now she is 4'9! She is growing 1/2 inch per month! woohoo! gluten-free diet really works.

Excellent! Amazing, isn't it?

[maximoo]

UPDATE: DD is still growing but seems to slowed down a bit. She is now 4'9 3/4 and is 78 lbs. That's almost 3 in this yr! Due to school she isn't sleeping as much. I am so proud of her! She is so vigilent in avoiding gluten, even when I falter a little. (we went to Hooters & I didn't ask if fries were gluten-free) She totally called me out on it ! She wants to go on field trip to Disney & started researching herself gluten-free foods @ Isl of Adventure.

She surprised me! I thought she would still try to eat or be laxsidaisical about eating gluten. She is better than me YAY! Oh & she requested that I start experimenting making things for Thanksgiving dinner so she will have many choices to eat.

DS relies on me too much to tell him what's gluten-free but he has mild autism. But once I tell him something has gluten he won't touch it. I'm think of getting him one of those gluten-free apps for the ipod.