Next Step Help

[October3]

So, we are about 5 weeks into an 8 week gluten free trial on my 2 boys. Neither of them had obvious GI symptoms, although the older one has a tendency for gassiness. But both have malabsorption symptoms (Keratosis Pilaris, tooth discoloration, anemia) which could be gluten related or could be something else. Neither of them seems at all different behaviorally or GI wise off of gluten than they were on gluten. Younger son had his first known glutening last night and didn't seem to react.

At 8 weeks our plan is to re-check my younger son's blood work for iron levels (not sure if the doc plans to re-check tTG which was 48 in January and 21 in April prior to starting gluten-free). Older son's blood levels were normal in April so no need to recheck. What then?

I'm thinking we re-introduce gluten on my older son at 8 weeks and check for symptoms. If none (which is what I'm guessing will happen) I guess he's back on gluten. But for my elevated tTG/ chronically anemic/ normal scope kid what do we do? Go ahead and trial gluten again regardless of iron levels? Or if iron is better at 8 weeks stay gluten-free and check again at 12 weeks? Or just take the 8 week improvement to mean gluten is something to avoid? And if iron is worse I'm thinking we can't assume gluten isn't a problem cuz it just might not have been long enough. And then the other question is if we determine gluten is affecting iron absorption how do we figure out how much gluten, if any, he can tolerate in the absence of any obvious symptoms?

[Roda]

Biopsies can bring a lot of false negatives. I'm not sure what the reference range was for the tests but your younger son's seem high. IMHO he shouldn't be producing those antibodies unless he has celiac. My youngest son's ttg was positive and we did not do a biopsy. I was afraid of getting a false negative. I did a 4.5 month trial of gluten free and then did a gluten challenge. My skeptical husband was the one who called it off after only three days. It was apparent he needs to stay gluten free and there is no doubt now in anyone's mind. I feel with a positive ttg, my diagnosis of celiac (blood/biopsy) and his response to the gluten challenge he has celiac. My older son's blood work is always negative. His allergist feels regardless he needs to be gluten free also. Trying to figure out with the hubby what route he wants to take for him. I feel that some kind of a diagnosis, whether gluten intolerence or celiac disease, is important down the road. So if we can't get that from a GI our allergist may be able to diagnose that. I feel pretty confident I can get an official diagnosis from the ped or allergist for my younger son so that's not a problem and hubby wants that documented.

Was your older son's tests in Jan. elevated too? I would at the very least keep the youngest one gluten free or both. Obviously as you said something is causing them malabsorption issues.

[mushroom]

Has your older son's gassiness level changed on the gluten free diet? Does the doc have any other theories about the tooth enamel problems (which I have previously only heard related to celiac disease)? Yes, I think your younger son's tTG should be rechecked at eight weeks, as well as his iron. if tTG is way down, it would be a strong celiac indicator to me. I think, personally, that the strongest indicator would be to put them both back on gluten and recheck their levels at 8 weeks (that is, if they don't respond badly to it). If they do respond badly then you have an answer of some kind.

[October3]

Biopsies can bring a lot of false negatives. I'm not sure what the reference range was for the tests but your younger son's seem high. IMHO he shouldn't be producing those antibodies unless he has celiac. My youngest son's ttg was positive and we did not do a biopsy. I was afraid of getting a false negative. I did a 4.5 month trial of gluten free and then did a gluten challenge. My skeptical husband was the one who called it off after only three days. It was apparent he needs to stay gluten free and there is no doubt now in anyone's mind. I feel with a positive ttg, my diagnosis of celiac (blood/biopsy) and his response to the gluten challenge he has celiac. My older son's blood work is always negative. His allergist feels regardless he needs to be gluten free also. Trying to figure out with the hubby what route he wants to take for him. I feel that some kind of a diagnosis, whether gluten intolerence or celiac disease, is important down the road. So if we can't get that from a GI our allergist may be able to diagnose that. I feel pretty confident I can get an official diagnosis from the ped or allergist for my younger son so that's not a problem and hubby wants that documented.

Was your older son's tests in Jan. elevated too? I would at the very least keep the youngest one gluten free or both. Obviously as you said something is causing them malabsorption issues.

We didn't test my older son in January. His blood levels have always been find but he has the KP and some chronic inflammation in his esophagus. Food intolerance testing did not show gluten as an issue for him but we thought as long as we were trialing my younger son we'd try him too.

I hope, for everyone's sake, that my son's react to the gluten trial like your son where it is very obvious (that is, if gluten is really an issue for them). I don't want to keep them off gluten long term on a hunch and nothing more, yk? And like you I will have a skeptical husband who I need to be on board if we're going to do long term eliminations of things.

The tTG can be elevated with other autoimmune issues in addition to celiac disease, but he doesn't seem to have anything obvious to test for something else. Apparently it can also be elevated transiently for no known reason. So its possible that's what is going on with my younger son especially since his tTG dropped by more than 1/2 without any intervention at all.

[October3]

Has your older son's gassiness level changed on the gluten free diet? Does the doc have any other theories about the tooth enamel problems (which I have previously only heard related to celiac disease)? Yes, I think your younger son's tTG should be rechecked at eight weeks, as well as his iron. if tTG is way down, it would be a strong celiac indicator to me. I think, personally, that the strongest indicator would be to put them both back on gluten and recheck their levels at 8 weeks (that is, if they don't respond badly to it). If they do respond badly then you have an answer of some kind.

He's still gassy - I can't say there's been any significant change. I've been asking the dentist and docs about the tooth enamel for years now. The answers I'm given don't make any sense. They say it could be something that happened during formation of the teeth, but his teeth were fine until he was around 18 months which was also just on the tail end of his babyhood colitis and right in the middle of persistent anemia. I blamed the massive iron supplements we were giving him but nobody thought that was it. I read in a pamphlet at the pediatrician's office about the connection with celiac disease and brought it up to the pedi a long time ago but she dismissed it. Anyhow we have no answer for the enamel other than celiac, but apparently the docs don't feel that is enough evidence even with the elevated tTG and the recurrent anemia.

As for rechecking the tTG, its a little confusing to me why his tTG dropped to 21 before we started the diet and so I don't know if it is now in the normal range if we can assume its because of the diet. So, like you, I was thinking maybe the next step is to reintroduce gluten for awhile (another 8 weeks seems reasonable) and as long as there is no discomfort or obvious negative reaction we will stick with gluten and see what happens to the tTG and the iron and then do another elimination for my younger son. I'm thinking that even with the KP and inflammation in his esophagus we don't have enough evidence to keep my older son off gluten at this point. We might just need to tackle his issues through anti-inflammatory supplements and gut healing strategies.

What a tedious process!

[Cara in Boston]

We have a tooth mystery here too.

My older son (8) has had discolored teeth since his adult teeth came in - the color is streaky - not uniform. We have never heard from any doctor or dentist about why this might be ("teeth come in all colors . . ."). My youngest son (6)was diagnosed with celiac (blood and biopsy) in March and we all got tested. He had very few symptoms - mostly behavior. I tested positive and husband and older son negative.

When I read that celiac can cause tooth enamel issues in children, I took older son to the celiac specialist we see at Children's. She is not convinced the blood work is accurate and will probably order an endoscopy for him anyway (we are waiting for results of a second, more sensitive blood test).

If his endoscopy comes back negative, I will switch him to gluten-free for the summer (it won't be hard with two of us already doing it) and just see how he feels. He is also very gassy (I just thought that was how boys were, but now that my younger son is off gluten, it is clear that it is unusual) and very moody.

I hoping after 8 weeks there will be something obvious to point us in the right direction?

Good luck figuring all this out. It took over 4 months to get younger son diagnosed.

Cara

[October3]

We have a tooth mystery here too.

My older son (8) has had discolored teeth since his adult teeth came in - the color is streaky - not uniform. We have never heard from any doctor or dentist about why this might be ("teeth come in all colors . . ."). My youngest son (6)was diagnosed with celiac (blood and biopsy) in March and we all got tested. He had very few symptoms - mostly behavior. I tested positive and husband and older son negative.

When I read that celiac can cause tooth enamel issues in children, I took older son to the celiac specialist we see at Children's. She is not convinced the blood work is accurate and will probably order an endoscopy for him anyway (we are waiting for results of a second, more sensitive blood test).

If his endoscopy comes back negative, I will switch him to gluten-free for the summer (it won't be hard with two of us already doing it) and just see how he feels. He is also very gassy (I just thought that was how boys were, but now that my younger son is off gluten, it is clear that it is unusual) and very moody.

I hoping after 8 weeks there will be something obvious to point us in the right direction?

Good luck figuring all this out. It took over 4 months to get younger son diagnosed.

Cara

Good luck in your quest for answers too Cara.

I'm thinking now what we will do is this:

If my younger son's iron levels have improved since April we will do 8 weeks on gluten to see how he reacts and to check if that causes him to drop. If his iron levels are the same as April we will continue the gluten free diet for another 4 weeks and recheck. If his iron levels have dropped we'll resume gluten and add in an iron supplement, and then maybe consult with a homeopath or someone else. For my older son we'll add gluten in at 8 weeks and look for symptoms to make a decision.

[October3]

I'm not feeling good about the direction things are going. My younger son has been really emotional for the past week or so - lots of meltdowns over little things. Could be all the changes with school ending, or coincidence, but I've also noticed a couple of bruises. Starting to think maybe he's anemic again. If that's the case do we assume gluten is not the problem? In April he was not anemic but his iron stores were low. We stopped the iron and vit C supplements when we went gluten free 5 weeks ago.

[Roda]

If his iron stores were low when starting gluten free then what he is getting in his food is probably not enough to build that up. I wasn't able to tolerate any iron until I was about 6 months gluten free. I was able to absorb the supplement then and got my stores up to normal in several months. Now I don't need supplementation any longer.

[mushroom]

... but I've also noticed a couple of bruises. Starting to think maybe he's anemic again. If that's the case do we assume gluten is not the problem? In April he was not anemic but his iron stores were low. We stopped the iron and vit C supplements when we went gluten free 5 weeks ago.

No, you cannot assume that. If gluten is the problem the iron stores are low because his gut is damaged and not absorbing iron. This damage will take quite a while to heal and in the meantime if you are not supplementing his stores will drop even lower.

[October3]

If his iron stores were low when starting gluten free then what he is getting in his food is probably not enough to build that up. I wasn't able to tolerate any iron until I was about 6 months gluten free. I was able to absorb the supplement then and got my stores up to normal in several months. Now I don't need supplementation any longer.

Hmm. Interesting. I based our little experiment on a study I read that had people with full blown celiac with iron deficiency anemia take no supplements but change to a gluten free diet for 6 months. The vast majority of those people had resolved their anemia by 6 months. I was thinking because my son doesn't apparently have full blown celiac (no damage on biopsies) that he wouldn't need a full 6 months. But maybe 2 months isn't enough and he is just dipping down now but will come back up? I don't want to supplement because that's the whole point of the experiment - we know his iron levels will go up with iron supplements. We just don't know how to keep them up. And I don't want to keep doing the experiment and letting him get more and more anemic.

How else can I figure this out? Any ideas?

[October3]

What a difference a week makes!

For my older son, in the past week his bowel movements have become almost pristine. No gas, floaties, etc. Major change for him. Even more exciting is that his keratosis pilaris which has been on his face and fairly severe since age 1 is almost totally gone. It fluctuates some anyway but has never been this good. With 2 more weeks on the diet I am very optimistic that it might be totally gone by the time we end.

For my younger son his behavior issues / meltdowns have not continued into this week. I'm thinking now they were related to the 1/2 gluten cookie he had at school a week ago Friday rather than a dip in his iron. I'm also more optimistic that the test might be long enough to show an improvement in his iron levels since my older son must be having improved absorption if the KP is better.

Now I'm almost hoping for a really severe reaction when we go back on gluten. If gluten is a problem for these boys I don't want there to be any question about it in anyone's mind, especially theirs. I want them to know that being on the diet is best for them and not just something their parents are forcing them to do.

[Roda]

Glad you are seeing some benefits. It can take awhile to see improvements gluten free. For my youngest son I didn't start seeing anything noticible until we got closer to the three month mark. I ended up doing his trial of gluten free for 4.5 month before we did the gluten challenge. It just worked out that way. We let him go hog wild during the three days, pizza, bread sticks, donuts, you name it. Within 12 hours he said his tummy hurt. He learned after that not to tell me because he was afraid I wouldn't let him eat anymore (sly little dog). The next night the mood swings were very pronounced and his temper tantrums that he had not had in 3 months were back. He also couldn't hide the tummy ache anymore since he asked me to rub his tummy for over an hour. We continued it for another day until my husband couldn't stand the behavior any longer. That's when hubby called it quits. It made a believer out of him since we did not do the scope and went gluten free based on a positive ttg only. He was then constipated for about 5 days which this child never is. I wasn't sure what to expect really. Before gluten free the thing that prompted me to get him reblood tested was that he was saying he was having "puke burps", random tummy ache off and on for 6 months and I noticed some fat floating in the toilet a few times after he had a BM. I wasn't sure if the tempertantrums and his bizzar obcession with his shoes were related or not. But the great thing is that all have gone away gluten free. He was given some gluten Friday at summer program and he had a meltdown Friday afternoon but I think it will be very short lived (thank goodness) than when we did the challenge.

You mention that your one son has KP. I don't know much about it but I sort of suspect it in my youngest also. He had a lot of flesh colored bumps all over his arms and legs. They were worse in the winter and now are gone. Don't know if it is related. He also has white spots (look like black heads but they aren't) all over his nose since he was born that have not went away yet and he is 6.

[October3]

Crap! Almost certain my 6 yr old tTG positive/ negative scope kid is anemic again. His behavior is a disaster. He's just such a mess. I don't think we can make it to the 8 week mark. I was planning to take him for his blood tests next Saturday (a few days shy of 8 weeks) in the hopes of having results back by the next weekend so we could do a challenge at 8 1/2 weeks. NOw I don't think we can make it that long. The earliest I can get him to the lab is Wednesday and thinking about doing that now.

In any case, I'm almost certain this little experiment has been a failure. I realize 8 weeks may not be long enough for healing to occur but we can't let him go on feeling so terrible so I feel like we need to supplement iron now. In the absence of any GI symptoms or really anything else that we could track day to day I'm not sure how in the world we will ever figure out if gluten is a problem. I was hoping to see a change in something subtle - his bedwetting or some behavior that we didn't realize was a symptom - but really nothing stands out. Ugh.

No idea what the next step is....