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3 Y/o With History Of Stomach Issues


jo ellen

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jo ellen Newbie

My 3 year old son, Byron, had severe diahreah for 8 weeks at about 18 months of age. They did the blood work for Celiac disease and it came back negative. At that point I wasn't feed him any diary and almost no wheat products. Now, at age 3, he has it again. He has been having issues for the past month. He is also very active and complains about being itchy. He hasn't had any stomach viruses recently and we haven't dramatically changed his diet. Byron will be 4 in October, still wears 2T clothes and weighs maybe 28 lbs. My grandma was diagnosed with Celiac disease about 3 years ago. She had lost down to 69 lbs and was always sick!! She has ostioperosis, rhumotoid arthritis, excema, and anemia....but she is also almost 89 years old! I take my 10 month old for a check-up on Thursday and I am going to ask the pediatrician his opinion and I'll probably get something for a stool sample (how fun!!) to bring back to them. Hopefully he can be seen before we go on vacation on 6/28 and we can get the blood work done again and possibly scheduled for a biopsy or some answers to my concerns. Any comments or suggestions would be greatly appreciated!

Thanks!

Jo


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TCA Contributor

Your son sounds a lot like mine. He will be 3 is Dec. and finally hit 30 lbs!!!!! he's also wearing mostly 3T clothes. He went gluten-free in Jan and the change has been unbelievable. He also got sick when he was younger, but never got better. He was dairy free until 21 mos., but still refuses milk. He had 2 negative biopsies and inconclusive bloodwork, so they said he just had toddler's diarrhea. I got so tired of hearing that and I finally told them that toddler's D only meant they had no clue what was causing it. My pediatrician half smiled and agreed. I finally just tried the diet and the results were AMAZING. in 3 weeks the D stopped and he potty trainined!!!!!! :D He gained about a lb. and an inch a month too. He's still small, but a healthy small. If he ever gets gluten accidentally, he had D again. The testing in kids under 5 is very inconclusive. The procedures really aren't a big deal, but didn't yield any results for us. Just keep all that in mind as you go into testing.

When they do your son's blood work, make sure they test for all 4 antibodies and and IgA deficiency. Also get the to do a CBC to check his blood levels for anemia. All this can help lead to a diagnosis. If you get positive blood work, it is a diagnosis, but many drs. want to go ahead and do the biopsy. It's not a huge deal, but follow your gut on this one and don't feel like you just have to do it.

Welcome to the board and I hope Byron feels better soon. Let me know if I can help in any way!

aorona Rookie

My son also had the same thing. My youngest son tested positive for celiac, but the older on the test was inconclusive. Testing is not acurate for kids under 5. My two sons have done remarkable on the diet. IN one year my kids have each gained over 10 pounds!! If the retesting comes out negative, you can always try the diet for 30 days and then give him gluten & see if he has a reaction. My oldest son was out of control hyper and now is much better. Good luck.

jo ellen Newbie

What exact tests should I ask for when requesting the blood work on my son?

TCA Contributor
What exact tests should I ask for when requesting the blood work on my son?

EMA-IgA

tTg-IgA

total serum IgA

AgA-IgA

AGA-IgG

CBC (this checks for anemia)

Prometheus labs does this. Do a search and they will explain it all in their web site. gotta run crying baby!

BRUMI1968 Collaborator

Should she ask for a specific B12 test? I know I had one separate from the CBC, and found I was very deficient, which helped lead to my diagnosis.

jo ellen Newbie

I asked the pediatrician about it on Thursday at my daughter's 9 month check-up about Byron's problems. He said to wait until after vacation and we'd get a stool sample and they'd test it for bacteria, etc. If that came back normal and he was still having issues then they'd do the blood work and possily refer us to a GI specialist. I was so excited about Kathryn's visit that I totally forgot to get the thing to collect the stool sample in. Kathryn was born with an impreforated anus which was corrected with 1 surgery. She now takes laxatives, antibiotics (for kidney reflus disease), and he told me to add a half tbsp of powder fiber and lots of juice and water to her diet. He did say that some times kids (like adults) just have times where their bowel habits are not normal. I agreed, but then said 6 weeks of it is a bit much. He said maybe Byron is constipated and that when I am seeing is the liquified stuff coming from around the stuff he has held in there. I said I didn't think that was the case since he had had a 'nromal morning routine' like his daddy up until all this started happening again.... We will see what the future holds, I guess.

jo


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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
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