How Long Does It Take?

[Brigid]

to see symptoms?

My 22 month old, Liam, began with diarrhea 4-10 times in Dec 07, very watery stuff that at first we thought was a GI virus. After 25 days of diarrhea, many doctors visits, many stool and blood cultures, nothing was showing up and we were sent to a GI pediatric specialist. She suspected Celiac. His IgA was 1 point below the normal range, that was the only lab that was even the littlest bit off.

We took Liam off all gluten and withing a few days he was having 1-2 stools a day that after a week were formed and solid. We kept him gluten free January 08-March 08 with no diarrhea but for 2 times (both times the day after he ate kidney beans, I think it was too much fiber for him).

We put him on gluten March 20 at the GI docs request, for a biopsy scheduled for this next Monday. Since he started back, no diarrhea for most of the month, his stools were a little mushy, like mashed potatoes, but certainly not diarrhea. As of this weekend, so 3 weeks into the gluten foods, he has had 2-4 liquid stools on sat/sunday. It seemsed to improve monday.Ive told the GI doc all this, they feel its likely NOT celiac.

But today, tuesday, the diarrhea is back, 3 times today, and very liquid. Im so confused as to what to do....

I left a message for the doctor this afternoon.

My questions are this:

Wouldnt if my son were celiac, he have reacted to the gluten prior to 3 weeks into the challenge?

He had fallen down off the growth chart (from 50th to 10th percentile since december, but has been gaining weight since being back on the gluten). He has put on a pound the last 3 weeks. Would it be normal to see weight gain during a gluten challenge?

The diarrhea began 6 hours after he ate oatmeal (the first time he had had oatmeal since December). Is it possible he has oat intolerance (as opposed to celiac/gluten issues?) And if so, how long would diarrhea from oat exposure last?

I cant seem to find a lot of info on oat allergy/intolerance on the web that isnt celiac+oat sensitivity.

Sorry this is so long, but we've wrestled with this for MONTHS, 5 to be exact, and I want my baby to feel better!!

[MrsGlutenFree]

Hi! First of all, HUGS to you for going through this. Having gone through this myself with my ds (who's almost 4) I know how emotionally stressful it is. With that said, I think that yes, he could have Celiac and just not have a body response right away. It all depends on the person. Some people eat gluten (while having Celiac attacks before) & have no symptoms. I'm curious to find out what the biopsy results will say. I think at this point, I would have your child gluten-free after the biopsy until you know more!

[Brigid]

Hi! First of all, HUGS to you for going through this. Having gone through this myself with my ds (who's almost 4) I know how emotionally stressful it is. With that said, I think that yes, he could have Celiac and just not have a body response right away. It all depends on the person. Some people eat gluten (while having Celiac attacks before) & have no symptoms. I'm curious to find out what the biopsy results will say. I think at this point, I would have your child gluten-free after the biopsy until you know more!

Thank you so much for the reply, its like a lifeline to hear about your story. We go in this monday at dawn for upper and lower scopes for biopsy, and bloodwork(thankfully done while Liam is snoozin on the anesthetic drugs).

Im so nervous, and Im kinda wondering with him having intermittant diarrhea for awhile, how much the prep Milk of Mag is really gonna do....I mean, there cant be much DOWN there by now, right?

[MrsGlutenFree]

Thank you so much for the reply, its like a lifeline to hear about your story. We go in this monday at dawn for upper and lower scopes for biopsy, and bloodwork(thankfully done while Liam is snoozin on the anesthetic drugs).

Im so nervous, and Im kinda wondering with him having intermittant diarrhea for awhile, how much the prep Milk of Mag is really gonna do....I mean, there cant be much DOWN there by now, right?

Your best bet is to have him completely cleaned out, so I'd do whatever the GI suggests. My ds had a grueling 48hr. liquid diet, 2 adult size enemas & laxatives. Not a good experience at all.

I know what you mean about being nervous. The actual scope was the easiest out of anything ds has had done. (((HUGS))) It'll be done quick & smoothly & it'll be so nice to get the results back. I'll check back here and hopefully find your results. If you want, email me, too. My email addy is on my blog or send me a message through here! Good luck! Liam will do great!

[Brigid]

Your best bet is to have him completely cleaned out, so I'd do whatever the GI suggests. My ds had a grueling 48hr. liquid diet, 2 adult size enemas & laxatives. Not a good experience at all.

I know what you mean about being nervous. The actual scope was the easiest out of anything ds has had done. (((HUGS))) It'll be done quick & smoothly & it'll be so nice to get the results back. I'll check back here and hopefully find your results. If you want, email me, too. My email addy is on my blog or send me a message through here! Good luck! Liam will do great!

We are doing 3 milk of mag doses, and 2 suppositories...plus the liquid diet. Yuck, I feel sooooo bad for my poor sweet baby, having all that done to him. Did your ds have a lot of tummy cramps with the prep? Its hard, as Liam is talking, but not to the level of being able to express a lot of non-concrete type stuff yet. He can sing ABC's, but cant say "Mom, I have abdominal cramps from the mess you keep giving me!"

How soon do biopsy results come back, on average? Im afraid he has celiac, and Im also equally afraid it is gonna come back negative, and I still wont know WHAT this all is..

[gfp]

How soon do biopsy results come back, on average? Im afraid he has celiac, and Im also equally afraid it is gonna come back negative, and I still wont know WHAT this all is..

I'm sorry to agree.

At his age the body repairs very very quickly...

One interpretation of your description (which you seem to be saying between the lines?) is that it took quite a bit to really screw him up... a long extended glutening and he was only gluten-free for 3 months (a lot of his life but not so long in real terms).

One way to classify celiac disease vs pre-celiac disease might be that at one point our bodies are repairing the damaged villi faster than destroying them. His immune system right now is barely his own, its still largely your's as he uses antibodies from your blood (IgG) and your milk (IgA). So his body right now like any other 22 month old is weak in its own immune response and very strong at growth/repairing. Given this the damage to villi is likely being repaired but he can still have all the other problems ...

p.s.

celiac disease is not a bad diagnosis its culturally inconvenient becase our Western Diet is so based on bread and wheat but image you are an inuit, many inuits have a very high resiliance to eating very high concentrations of Vitamin 'A' which is found in Polar Bear, Seal and Walrus meats. Centuries have adapted them to be able to exist on what to most of us is poisonious. However not all of the inuit have the same tolerance....

So do I feel 'disabled' by not being able to tolerate polar bears? No, because its not part of my cultural diet... however my ancestors ate wheat... I just don't have the same tolerance to it as they do... The fact there are far more caucasians than inuit just makes it more seem more normal to eat wheat? However its not good for anyone, like polar bears... some people just tolerate it better than others...

Imagine being a cow, unable to eat grass or panda with bamboo intolerance... that would be bad!

[Brigid]

I'm sorry to agree.

At his age the body repairs very very quickly...

One interpretation of your description (which you seem to be saying between the lines?) is that it took quite a bit to really screw him up... a long extended glutening and he was only gluten-free for 3 months (a lot of his life but not so long in real terms).

One way to classify celiac disease vs pre-celiac disease might be that at one point our bodies are repairing the damaged villi faster than destroying them. His immune system right now is barely his own, its still largely your's as he uses antibodies from your blood (IgG) and your milk (IgA). So his body right now like any other 22 month old is weak in its own immune response and very strong at growth/repairing. Given this the damage to villi is likely being repaired but he can still have all the other problems ...

He went back on gluten the end of March, so 20 days of gluten till we saw diarrhea...is that long/short/or normal to take that long for symptoms to arise?

[gfp]

He went back on gluten the end of March, so 20 days of gluten till we saw diarrhea...is that long/short/or normal to take that long for symptoms to arise?

Its a long time for an adult .... but that doesn't mean much really for him at his age. Incidentally not everyone even gets diarrhea, some people actually get constipated and some people get pain but no D and others D and not much pain... Quite a few people here had no symptoms they were aware of until they got diagnosed because of another indicator like anaemia...

Its very individual but I personally started off as a baby reacting very badly to the formula milk (containing gluten) then 3-18 or so no real symptoms I noticed at the time (retrospectively I had quite a few like breaking practically every bone in my body) but compared to my brother (non celiac) my gastro probs didn't really start until 19-20.... and even then it was not constant until i was 26-27... However the intervening years I really wish I'd known.

[Brigid]

A follow up:

So we got through the scope with our 22 month old, Liam, the initial results were the vili looked fine, but the pathologist said something about seeking leuko-something or others which could indicate early celiac. The nurse said the GI doc was going to call and talk to the pathologist for more info...so far, we are still waiting.

He was put back gluten free after the test, its been several days, still having loose stools 2-3 times a day though...

My 6yo, Jack, has begun having mild occational diarrhea over the past 3 months. It was assumed to be a food intolerance, or allergy, so his pediatrician (same one as my 22 month old also sees) ran a ton of labs...the hemaoccult stool blood test came back positive.

So now, we are going to be taking him to see the GI doc too.

Im so at the end of my rope...no one can tell me whats going on with my babies.