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3 1/2 Year Old, And Overwhelmed

Annie/NM

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Annie/NM Apprentice
Annie/NM
Posted

Wow, I feel a lot overwhelmed. Let me give you our background. I have a 3 1/2 year old son who started at age 2 with diarhea. It lasted for several months. After all the tests came back negative, they called it "toddler diarhea." The doctor mentioned Celiac's disease but didn't think that it matched my son's body type. He was 10.6 ounces at birth and very tall and robust. Well, 1 1/2 years later we are still have problems with his stool. It seems to be more constipation, or partial stool now (but between 3-7 times a day). Again, they thought it was behavioral or irritable bowel or constipation. He also has very fowl smelling stools and eats very little amounts of food. They decided to do the blood test last week for Celiac again assuring me that it most likely wasn't that. Well the test came back positive. I don't completely understand it all but he is supposed to be under 7 for his levels but came back over 20. So they reassure me that it might still be a negative biopsy (May 9th) but now I'm not so sure reading this board. He doesn't really have any pain, had a big stomache ache on Easter but we thought it was his constipation or all the candy he ate. He does have dark circles under his eyes and just looks sickly a lot of the time. We were worried about something seriously wrong with him. My question is, is it likely with the blood test that his biopsy will be negative? Even if it is, it sounds like we still can't trust that. He also has asthma and mollesca contagiousim (a virus that has wart like bumps all over his trunk). I didn't know if these conditions were related as well. I am new to the board and appreciate any input. THanks for listening!

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flagbabyds Collaborator
flagbabyds
Posted

Hi and welcome to the board. You will find some great resources here.

I would sayt hat go ahead with the biopsy, and make sure to keep him on lots of gluten, this will make sure that if he has celiac, that his biopsy might be positive. There is still a chance of his biopsy being negative, but I would reccomend that you will do the diet andyway, for maybe 6 months or so, and if he improves,then he is a celiac, and if he doesn't then go back to the doctor and have other tests done. And if he is positive, put him on a completely gluten-free diet forever, and he should get better soon. There are a lot of resources here for if he has a positive or a negative biopsy, there is still a chance that if he has a neg. biopsy that he will still have a positive dietary response, which to me is a good enough test. I think that that is the best test for if you are celiac or not, because it shows what you body is feeling, not just what 1 or 2 tests show.

Hope he feels better!

Jnkmnky Collaborator
Jnkmnky
Posted

I would not trust the tests because of his age. Do the diet. 100% gluten free is the rule. Check his shampoo, his lotions, his chapsticks, his sunscreen and all of the food and drink he'll be consuming. Keep him 100% gluten free and record any positive/negative changes every day in a little book. Count bowl movenments and consistency. Record rashes and even take pictures. Do this for a month and go over the results with a COMPETENT dr or just forget the dr and decide for yourself. My son was three when dxed as well. He is now nearly 8. He'd be dead if I hadn't found out about celiac disease. He was in awful shape the day I figured it out.

I would NOT do a biopsy on a 3and a half year old. The damage would likely be spotty at best and all tests are not great at dxing celiac disease in young kids. The diet is the clearest dx.

Guest elysealec
Guest elysealec
Posted

Hi. I just wanted to let you know my daughter was 9.8 at birth and was off the charts throughout her seven years. The only reason we had bloodwork done was because I was diagnosed with celiac disease. Her TTg came back highly elevated and the pediatrician thought it was a mistake. She never even had digestive issues, but she did have behavioral ones. We had the biopsy done at seven under advisement from Dr. Ivor Hill who is a leading expert on celiac disease. She had significant damage at that stage without classic symptoms. Her ped was very nice and said this changed her whole outlook on celiac disease. I do not know about 3.5 vs 7 years old, but I would probably rather be safe than do any more damage if positive. The procedure itself went very smoothly and quick. By the way, her behavior changed dramatically when off gluten.

Good luck.

Vicki

TCA Contributor
TCA
Posted

My son is also 3 1/2! He had GI issues from 6 weeks old when he had bloody stools. At around 9 mos old, shortly after introducing him to solids. His growth stopped. He was almost walking and no progress was being made there either plus the diarrhea started. This continued for a few months and his pediatrician mentioned Celiac as a possibility. He sent us back to the GI. AT around 20 mos. he did a biopsy (I didn't even know blood work was an option) and it was negative for Celiac. His problems continued and he started having major speech delays, though he finally walked at 16 mos. He still wasn't growing ans started having problems with asthma. His diarrhea was getting worse and he was labeled as having Toddler's Diarrhea (which just means they don't have a clue what's going on IMO) like your son. At 35 mos. he had the blood work done and it was "inconclusive" with elevated IgA and very High IgG. We were told that a biopsy had to be done to confirm it, but it was starting to look like celiac. The biopsy was negative. After all of this we found out that both blood work and biopsies are often incorrect (false negatives) in kids under 5. In Jan. I put him on a gluten-free diet and within three weeks his growth took off and the diarrhea stopped. It has been amazing to see the change. He hasn't had ANY asthma symptoms since we started the diet either. The GI doc now agrees that it's Celiac, but doesn't want to give him an official diagnosis since he doesn't have a positive biopsy and the diagnosis could be hard for insurance purposes later. He knows me very well, though, and said he wasn't doing it because he knew I would keep him on the diet no matter what. Keep in mind that biopsies aren't always correct in those that are so little. The procedure itself isn't a huge deal IMO, but keep in mind it may not be correct if they don't find damage and they need to get at least 6-8 samples. You have to make your own decision, though.

Guest nini
Guest nini
Posted

I wouldn't do the biopsy. My daughter was 3 at the time of my dx, and several months later it occured to me that what I had was genetic and it might explain her symtoms. Her bloodwork was negative and her ped. GI refused to even consider a dx of celiac, so I was back to the basics on this one. I got her ped. to agree to a trial of the diet. She signed off on a three week trial and by the end of the first week we had a miraculous recovery. Dietary response is the best indicator. You do not need a Dr.'s permission to put anyone on the diet. In my humble opinion positive bloodwork is more than enough proof. You can have false negatives but you cannot have false positives.

by the way, I tried to e-mail you back with the files you requested and the system you are on refused delivery of it because of the file extensions... it was a zip file... (archive)

Annie/NM Apprentice
Annie/NM
Posted
  • Author

Thank you guys for the answers. I have learned more from you guys then I have from my conversations with the dr.'s office so far. I'm not even sure what test they gave him. Just that his levels should be below 7 and they were above 20. So which one does that sound like? IgA or IgG? I have lots of questions, like should my husband and I be tested? What is the percentage of heredity? Or are there just random occurances in children with no family history. My 14 month old son is very wheezy like my 3 year old so now I"m worried, could he be having the same thing but too young to diagnose with the blood test. Would you test him? HOw about my 6 year old son who is very healthy? I"m sorry about my e-mail, I forgot that I work at the schools (I'm a speech pathologist) so they filter out large attachments. (just put the kit as the subject). ANyways, thanks for the input and I'm sure I will be coming to these boards frequently!

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Guest nini
Guest nini
Posted

file is sent Annie! good luck!

lbsteenwyk Explorer
lbsteenwyk
Posted
I'm not even sure what test they gave him. Just that his levels should be below 7 and they were above 20. So which one does that sound like? IgA or IgG?

My guess is this was a TTG - the most accurate test for celiac disease. Different labs have different normal/abnormal parameters, so it is best to confirm with your doctor which tests were done. You should get a copy of the lab results for your files anyway.

Jnkmnky Collaborator
Jnkmnky
Posted

You and your husband should be tested. The 6 year old should be tested. The baby... well, that's your call, but I'd make him gluten free to be safe.

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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