Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

How Long Does It Take?

Brigid

Recommended Posts

Brigid Newbie
Brigid
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MrsGlutenFree Newbie
MrsGlutenFree
Posted

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 Newbie
Brigid
Posted
  • Author
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 Newbie
MrsGlutenFree
Posted
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 Newbie
Brigid
Posted
  • Author
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!" :P

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 Enthusiast
gfp
Posted
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 :D 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... :D that would be bad!

Brigid Newbie
Brigid
Posted
  • Author
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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
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.

  • 2 weeks later...
Brigid Newbie
Brigid
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, an...
    2. Scott Adams
      - Scott Adams replied to N Young's topic in Doctors
      1

      Frustrated with Providers

      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten...
    3. Scott Adams
      - Scott Adams replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Iron loss and potential celiac.

      These articles may be helpful:
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph, by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some...
    5. N Young
      - N Young posted a topic in Doctors
      1

      Frustrated with Providers

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time. Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,116
    • Most Online (within 30 mins)
      10,442
    DiDi53
    Newest Member
    DiDi53
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Skin issues

      By Scott Adams · Posted

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
    • Scott Adams
      Frustrated with Providers

      By Scott Adams · Posted

      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten-free, that you have a long history of dermatitis herpetiformis and strong clinical response to the gluten-free diet, and that celiac disease remains your working diagnosis unless properly reassessed with a supervised gluten challenge, which you may not want or need at this stage. This should help prevent future confusion. It is understandable to feel frustrated, especially after decades of being dismissed, but this may be fixable with a calm conversation and a chart correction rather than changing doctors.
    • Scott Adams
      Iron loss and potential celiac.

      By Scott Adams · Posted

      These articles may be helpful:    
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
    • N Young
      Frustrated with Providers

      By N Young · Posted

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time.   Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative.  My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac).  I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle.  Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months.  Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?   
×
×
  • Create New...