Coming Up On Three Months Gluten Free

[Roda]

Well around the 19th of this month it will be three months that my 6 year old has been gluten free. There have been some bugs that needed worked out but all in all we have adjusted. I didn't take him to a GI doctor and went gluten free based on his postitive ttg test and my diagnosis. I did this anyway knowing what the consequences would mean for future and accurate testing. I plan to do a "challenge", not so much for further testing, but more in the sense of the elimination diet. I eliminated gluten for a time and now am going to reintroduce it to see what his reaction is. I didn't see the drastic results after removing gluten in him as some people report, but gradually I have noticed things that have either improved or gone away. Before gluten free he was complaining of random stomach aches for 6 months off and on, I noticed fat in his stool on two occasions (he doesn't need much help any more so it may have been happening more often), a weird obsession with his shoe strings/velcro that would spiral into "melt downs" and a recurrance of his rhinosinusitis. Since gluten free very few complaints of his tummy hurting, the weird shoe thing has gone, and the meltdowns are a lot less frequent. I don't know about the fat since he needs his privacy now. LOL. He has however had one doozy of a sinus infection and strep tonsillitis since. He has a long history with his tonsils up until 2.5 yrs (deffered on having them out..wait and see) and he was good on that until this last year. Will probably now consider getting them out now that he is older. Good news is he has gained significant weight since his last yearly check up. The NP noted to me that he is now in the 50th percentile on both that he was always underweight before. He was 46" and 43# today. I almost don't want to do the challenge but I do want to know what his reactions are going to be. My concern is that if there are delayed reactions my husband might blame something else and say that I'm blaming everything on gluten. I'm not sure how to deal with this or how long I should let him eat gluten. Also I plan on documenting what happens. Should I take this information to the allergist, ped or gi to see if they will diagnose him on his previous test results and dietary response?

[Takala]

Say what ?

I wouldn't do it, but that is just me. It is okay to experiment upon myself, as I am an adult, responsible for my own well being, and I can easily fend off the slings and arrows of people who Have No Idea What They Are Talking About.

But this is a small child with a positive ttg, better health off gluten per your results, and a positive parent.

You need to put your foot down now with your husband. In terms of respecting your family's need to eat healthy for their body types. You can do everything correctly, technically, according the Insurance Reimbursement Gods, and still end up with a test result that says "nothing is wrong" officially while you or your close relatives are obviously ill, yet responding to diet. Of course this creates conflict if somebody feels inconvenienced.

And the professional medical-o-sphere isn't going to give a fig about what you did, with a diet challenge, unless they are ones running the show. It's just the way it is. They will likely angle for a biopsy, and now he'd have to be back on gluten for months.

[Roda]

Now I know I'm not the only one that has done a gluten challenge for a child. Yes, and gluten free he will eventually stay. This is something that my husband and I aggreed on. He has been very considerate and supporting of this for my son. He has even quit bringing things in the house that he used to eat because he does not want to upset him. And I agree you can't blame everything on gluten. for instance two weeks ago his behavior went off and he had a melt down. It wasn't gluten but was strep so I think that is the point he is trying to make. I'm trying to respect his feeling too. I don't expect the challenge will last very long.

[Mizzo]

Well a positive Ttg equals Celiac disease. I am not sure I follow the reasoning for the reintroduction but if you want to be accurate you should see a GI specialist as well. If you are not going to see a GI than you need to be clear on the reintroduction of foods. You should not change ANY thing else ( NO eating out, NO letting anyone else feed him, NO unsupervised events where food is involved etc... etc... ) Also, be fully prepared to accept the results. BTW a true test is not for a "short time" . Even when doing a Endosccopy or blood work they require 3 months on gluten for accuracy. If you give him gluten and he throws up it's a sure bet but that is the rarity and just like healing it may take a little while to see the reaction as gluten and not some outside factor.

Three months gluten free is a drop in the bucket.. It took 3 months for my dd to stop having tummy pains, 2 1/2 months for tantrums and emotional outbursts to stop, and 3-4 months for constipation /diarrhea to stop. Then she started to really heal.

That was with a positive bloodwork and positive endoscopy so I KNOW it's Celiac. Therefore, yes it takes awhile.

It sounds like you and your husband are not sure about the ttg results, and the changes in your son. Really consider going to a GI that is recommended by someone you know or ask around.

Good luck to your child, and you both.

[tarnalberry]

I understand where you're coming from. As a scientist, I think our experiments need to be a little more complete, even if they are on ourselves. As a parent, that includes your kids. We all make decisions that are weight the best of the pros and cons, and - as with other things - that list is going to be different for every individual family.

I hope that you have a safe challenge, and that it gives you a clearer picture, rather than a murkier one.

[T.H.]

Best I can do is relate my own experiences on this one.

- re: doctors? If you find a very, very good doctor, he or she might take the information you gathered and review things and perhaps be willing to make a judgement call on your son's health. I have had one doctor like this in 20 years of trying to find good health with doctors spread across three states. Hard to find the really good ones, sadly. Most doctors will not accept your results. Some will only do medical tests and if something can't be tested, it's not real. Some will not take the word of a patient - a non-professional - no matter what. And some don't seem to like that a patient self-diagnosed...because, you know, we don't have brains at all. Or something to that effect.

- re: the gluten challenge. In a nutshell, I'd say two things: I would keep a detailed food journal of foods eaten and emotional/physical health status and I would wait longer to challenge with the gluten. I have two children who are currently gluten free. My daughter tested positive, my son tested negative, but after some research, I put them both on a gluten free diet. They improved, but, as you've experienced, there were also other issues that continued or popped up periodically. Now, I was diagnosed just 2 weeks before my daughter, and when it was found out that I had food allergies on top of the celiac disease, I changed tactics.

I took the whole family off of the 8 major food allergens (dairy, wheat, eggs, soy, tree nuts, pea nuts, shellfish, and fish). I looked up all the ingredients that meant one of these allergens. And then I kept a food journal - if you are not keeping a food journal, I would really, really recommend it. It make a big difference in tracking down food issues. And if you DO go to an allergist and find a good one, it will be very helpful for them, too.

When I took the kids off the allergens, their behavior improved again. Although because of the food diary, we discovered that the improvement wasn't because they reacted to any of the food allergens we took out. We had to make everything from scratch because of the diet limits, and the CORN additives that are usually in everything were what was doing it. We could track bad behavior back to corn on the food journal. And to apples and a few fruits, for my daughter.

For my son, he was rather like yours: there was no dramatic change. He hadn't been having the runs or stomach pains everyday, nothing like that. But there WAS a change. And we DID do a gluten challenge, but we waited an entire year off of gluten, and I have been happy we did. One, it gave us time to make sure nothing else was going on with the food. Two, it gave him enough time to fully heal. At 6 months gluten-free, there was still improvement from 3 months gluten-free, for ex.

And even the challenge, which we only did for 2 weeks, was not dramatic. His belly slowly became more bloated - we'd thought that had been a symptom, so I actually measured it before we challenged and during and after we went gluten-free again. He got really gassy. His stools were looser. His temperament didn't worsen until he had dairy and gluten together - I'm assuming it was affecting his ability to digest the lactose, but wouldn't swear to it.

However, it was a negative reaction to gluten. I don't know if it's celiac disease, don't think there is really a way to tell with current equipment the difference between celiac disease and gluten intolerance unless I let him damage himself all over again (although it sounds like that may change in the next few decades). But anyway...that's our story. I think the gluten challenge can tell you something, but yeah...I'd give it longer.

[kareng]

Roda,

I'm not sure exactly why you are going to give him gluten and make him sick? If his blood test was conclusive, but for some reason you or the GI choose not to do a biopsy, it's too late now. You could retake the blood tests and they should be going down significantly. That and his growth and relief of other symptoms should point to Celiac. I would try to get him diagnosed on that alone.

If the GI or your husband still want a gluten challenge and a biopsy, I would say no. You wouldn't ask someone with controlled diabetes or high blood pressure to go of their meds and get sick, just to " make sure".

I used to work at a children's hospital and parents who purposefully made their kids sick by feeding them things they knew they were allergic to, lost their rights to the kids. You may be doing it for the " right" reason but others might see it differently.

Maybe that seems harsh but, unless this is advised and supervised by the doc, it won't get a diagnosis in writing for school.

[Roda]

I realize the the steps necessary to do a proper gluten challenge for blood work/scope and that is not what I was aiming for. I am alright leaving him gluten free, but my husband was the more skeptical one. I appreciate everyone's opinion and I agree that everyone has to do what is right for them. If I hadn't tried certified gluten free oats I would have never known I was sensitive. The first day I ate them I wasn't sure, so I ate more the next day and by gosh, I knew for sure then. This also lead me to realize that I can't eat any Bob's Red Mill products anymore. So sometimes, yes, I think we have to take educated chances. I guess my original thought was would the information I gained from the reintroduction be enough for some doctors to use for a diagnosis? If not, then oh well. We will still have a better picture of things with or without theirs.

He had both Igg and Iga gliadin antibodies that were negative and only the ttg was positive at 16 ref. range 0-15 neg.

[Roda]

I understand where you're coming from. As a scientist, I think our experiments need to be a little more complete, even if they are on ourselves. As a parent, that includes your kids. We all make decisions that are weight the best of the pros and cons, and - as with other things - that list is going to be different for every individual family.

I hope that you have a safe challenge, and that it gives you a clearer picture, rather than a murkier one.

I think it will give us a clearer picture and put to rest some doubts in hubby's and my son's minds. An example of experiment, I only suspected I couldn't tolerate Bob's products. Last week while at Disney we visited the gluten free bakery in downtown Disney. I ended up eating two donuts and a few cookies. I knew beforehand that they used flours packaged by BRM. This was Tuesday and by Saturday my symptoms came back full force(luckily it was our last day and this didn't ruin the trip). I'm not entirley sure it was the bakery products, but I am more suspicious now than I was before. We didn't eat out at all and I cooked all of our meals. CC from my mom and dad could've happened but I was very careful. I actually had symptoms start on Thursday, but not bad till sat. I ended up when I got home starting back on my creon. Better now so I think I was on the right track before. Helped solidify what I had suspected but wasn't sure of.

[kareng]

Sorry. I misunderstood. I thought you said he had positive blood work. You will probably have to put him back on gluten for months maybe longer to get an official diagnosis. If he had very positive blood work, good response to diet and new blood work had gone down, I thought they could diagnose from that.

[Roda]

Sorry. I misunderstood. I thought you said he had positive blood work. You will probably have to put him back on gluten for months maybe longer to get an official diagnosis. If he had very positive blood work, good response to diet and new blood work had gone down, I thought they could diagnose from that.

Well yes and no. His ttg was positive Nov 2010(16 with 0-15 neg). His original one he had Nov. 2008 was negative I think it was 1 or 2 with > 19 positive so I felt this was a significant change.

[Roda]

Well, three months came and went and I still have not reintroduced gluten. My husband asked when I am going to and I really don't know. I think my husband is regretting agreeing to do the trial of gluten free without consulting the GI. He doesn't understand why I would reintroduce it if I am going to eventually keep him gluten free anyway. He thinks this will just confuse him and I have to say he is probably right. I have noticed improvements with him but not drastic ones. I really don't know what his reaction would be if he was to get gltuened. Heck, he may not even have an immediate reaction. I may go ahead and see a gi anyway and see what they have to say. Maybe we can get the genetic testing done and that may help us clear things up a little. I hate it that it isn't as cut and dry as it was with my diagnosis. Good in the sense that he isn't suffering like I did and causing more damage. This disease is like a double edge sword. I still feel like being gluten free is best and I just may have to settle with that. I guess when he is older he can make a decision to challenge or not.

[Kimmik95]

My two cents ....

I have a 6 year old son that was very quickly diagnosed with celiac disease based on blood tests and a biopsy. His GI doctor explained that the biopsy is currently the golden rule for determining celiac disease or not. Chris' damage was very mild, but he ate very little gluten at the time (by his choice, not mine), so I wouldn't be surprised if that was a factor.

Chris went gluten-free the end of November 2010 (a few days before Thanksgiving, actually). Over Christmas break, he was at a daycamp where they gave him 3 snacks that contained gluten (I could have a whole thread ranting about that one). We saw the affects for over 6 weeks. The biggest one was a nerological tic. He also had severe cramping in his elbow as well as stomach aches. When someone has a gluten sensitivity or intolerance and they stop eating gluten, any reintroduction of the gluten can result in a VERY severe reaction.

Honestly, if your child is doing well on a gluten-free diet, then I suggest leaving him on a gluten-free diet. The only thing an official celiac disease diagnosis gets you is the ability to give him a 504 at school (Christopher's school is fighting me on it anwyay). You can typically impliment all of the advantages of a 504 without officially having a 504.

If you wouldn't have already gone gluten-free, I would say to wait, have the testing, then go gluten-free. Since you already went gluten-free, I would not recommend reintroducing gluten, especially just to see.

Well around the 19th of this month it will be three months that my 6 year old has been gluten free. There have been some bugs that needed worked out but all in all we have adjusted. I didn't take him to a GI doctor and went gluten free based on his postitive ttg test and my diagnosis. I did this anyway knowing what the consequences would mean for future and accurate testing. I plan to do a "challenge", not so much for further testing, but more in the sense of the elimination diet. I eliminated gluten for a time and now am going to reintroduce it to see what his reaction is. I didn't see the drastic results after removing gluten in him as some people report, but gradually I have noticed things that have either improved or gone away. Before gluten free he was complaining of random stomach aches for 6 months off and on, I noticed fat in his stool on two occasions (he doesn't need much help any more so it may have been happening more often), a weird obsession with his shoe strings/velcro that would spiral into "melt downs" and a recurrance of his rhinosinusitis. Since gluten free very few complaints of his tummy hurting, the weird shoe thing has gone, and the meltdowns are a lot less frequent. I don't know about the fat since he needs his privacy now. LOL. He has however had one doozy of a sinus infection and strep tonsillitis since. He has a long history with his tonsils up until 2.5 yrs (deffered on having them out..wait and see) and he was good on that until this last year. Will probably now consider getting them out now that he is older. Good news is he has gained significant weight since his last yearly check up. The NP noted to me that he is now in the 50th percentile on both that he was always underweight before. He was 46" and 43# today. I almost don't want to do the challenge but I do want to know what his reactions are going to be. My concern is that if there are delayed reactions my husband might blame something else and say that I'm blaming everything on gluten. I'm not sure how to deal with this or how long I should let him eat gluten. Also I plan on documenting what happens. Should I take this information to the allergist, ped or gi to see if they will diagnose him on his previous test results and dietary response?

[Roda]

My two cents ....

I have a 6 year old son that was very quickly diagnosed with celiac disease based on blood tests and a biopsy. His GI doctor explained that the biopsy is currently the golden rule for determining celiac disease or not. Chris' damage was very mild, but he ate very little gluten at the time (by his choice, not mine), so I wouldn't be surprised if that was a factor.

Chris went gluten-free the end of November 2010 (a few days before Thanksgiving, actually). Over Christmas break, he was at a daycamp where they gave him 3 snacks that contained gluten (I could have a whole thread ranting about that one). We saw the affects for over 6 weeks. The biggest one was a nerological tic. He also had severe cramping in his elbow as well as stomach aches. When someone has a gluten sensitivity or intolerance and they stop eating gluten, any reintroduction of the gluten can result in a VERY severe reaction.

Honestly, if your child is doing well on a gluten-free diet, then I suggest leaving him on a gluten-free diet. The only thing an official celiac disease diagnosis gets you is the ability to give him a 504 at school (Christopher's school is fighting me on it anwyay). You can typically impliment all of the advantages of a 504 without officially having a 504.

If you wouldn't have already gone gluten-free, I would say to wait, have the testing, then go gluten-free. Since you already went gluten-free, I would not recommend reintroducing gluten, especially just to see.

I'm probably not going to challenge him, since I keep putting it off. I think subconsciously I don't want to anyway. My husband kept asking "when" and I told him I didn't know. As in my most recent post, my husband doesn't want me to bother if I intend to keep him gluten free anyway. He doesn't want to confuse him.

[Roda]

I know that this will probably generate quite a few passionate responses, but here it goes. I reintroduced gluten today. It's been 4 1/2 months since I took my six year old gluten free. He ate a regular grilled cheese sandwich (he was unaware) for lunch and he ate a slice of regular pizza and a bread stick for supper. There was no immediate reaction. I do know that reactions can take awhile so we will see. He is on spring break this next week so I thought it would be better to do it when we didn't have to deal with school. I did explain to him that this is not permanant and he would have to go back to eating like mommy.

[Roda]

Well after today, my little man is back gluten free!! This was something I agreed to do for my husband. I asked hubby how much longer he wanted it to go on and he wants to end it today. He made a comment that our son has been unbearable since Sunday and there was no point to keep it up. This is what we noticed in him. Sat. nothing. Sun. morning he told us his tummy ached but then the rest of the day he played. I noticed more fidgeting than usual, he couldn't keep his hands away from his mouth. As the day wore on he became slightly more irritable. He wanted me to rub his tummy (he wouldn't admit it was bothering him though) and at bed time cam unglued that he couldn't sleep with his brother. He was in his room sobbing in that pitiful way wanting mommy. I picked him up and layed with him on the couch and within 10 minutes he was alseep. Monday, the moodiness worstened and the fidgeting was all day, like he couldn't keep still. So after we discussed it, come tommorow morning he is back gluten free. I think it really reinforced the dietary change for my husband to see what happened and so quickly. We are now discussing what to do with our oldest. Trying to decide for further testing or do a gluten free trial with him. He has repeatedly tested negative on blood work, but we are debating on a gi consult and see if they will do a scope or not. So all in all, even though it was uncomfortable for a few days, we definately know that youngest son needs gluten free for good and noone cares about any furthing testing for him.