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Frustrated With Doctors And Test Results

Mom of a Celiac toddler

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Mom of a Celiac toddler Apprentice
Mom of a Celiac toddler
Posted

I am so frustrated right now and would love any advice or support! My 18 month old son has had a long history of fussiness, 4-6 STINKY poops a day, rejecting foods and growth issues (born in 95% down to 3%). Fast forward to a month or so ago when they finally did a stool sample and found fat in his stool , leading them to request that we do the biopsy for celiac. However, I couldn't wait three weeks for the biopsy knowing that what we were putting in my child's mouth was making him sick! We started to really limit gluten. In hind-sight probably not the wisest choice, but he had a blast in Disneyland and was a totally different kid (made for some priceless moments since D-land doesn't come along often for us)!! By the time the test rolled around we were already seeing a drastically different kid! He only has 2 normal -solid poops a day, he is now off his Prevacid, he eats WAY more, doesn't have to be held all the time and is so much happier. He dances all the time-who knew we had such a happy kid hiding in there!!

My problem is I just got the negative for the biopsy today! What do I do now? Are drs and day care and schools going to believe us that he needs to be gluten free or are missing something? Like could all these symptoms add up to something else? But then how do we dismiss that he is new kid when he is gluten free? Do I just trust my gut that he indeed has celiac, or do we pursue more testing??

Thanks for any advice you can give!!

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g1gg1e Rookie
g1gg1e
Posted

We are in the same boat with our two year old. We figured it out through breastfeeding that gluten was an issue. She grows now thats all we can ask for. I'm finding through my support group most kids are 10 before they get a + biopsy ( thats with sometimes even a family history) AND the kids have been sick often the whole time... We choose NOT to go on with the testing ( she stops eating and already is small, tube feeding would probably be the next step if feeding her gluten). She had a positive DNA test for DQ2 so right now we are just going on that...oh and the fact that she is NORMAL when she doesn't have gluten. Ive told them just to humor us and consider her gluten intolerant...

I'm hearing that it can take 10-15 years before you can get a formal diagnosis. I at this time want a happy kid and if we can avoid the life long complications that go with this issue then that is our goal.

Its rough we don't have support from DH's family and its hard to go to kids stuff right now ( cheerios and playdoh).

SO I'd trust my gut and wait. We hope to do alternative testing like enterolab when we get the money together but right now we want her to be a normal 2 yo.

Poop question if you don't mind my asking. When exposed does your LO's poop smell like fresh tar? We notice this with our LO and its not a common observation when talking to the Dr.

Mom of a Celiac toddler Apprentice
Mom of a Celiac toddler
Posted
  • Author

I hadn't noticed a tar smell, but it was so super stinky, it could easily clear a room! Poop was a big deal with him, because it was uncomfortable for him to poop, even though he was going 4-6 times a day. We are down to twice a day, normal smelling, and no uncomfortableness with it!

Thank you for your input. We are more resolved to the fact that we are trusting our guts, and his fantastic reaction to gluten free diet. We are hoping we can reintroduce dairy in a month or so. It is great also that he doesn't have to be on Prevacid anymore! Now we are just hoping and praying for weight gain!

Thanks again, Jodi

no-more-muffins Apprentice
no-more-muffins
Posted

You might consider testing with www.enterolab.com. A lot of people who have had negative blood and biopsies have found answers there with their stool testing. They dont' diagnose celiac per se, but they can tell you if he has an intestinal reaction to gluten, and you don't have to have him eat it to get the testing done.

From your description, I would say that he either does have celiac or is very gluten intolerant. If he has improved with a dietary change, that should definitely give you a huge clue to the puzzle.

There is a great book called "Healthier Without Wheat" that talks about the downfalls of traditional testing. It is by Dr. Stephen Wangen.

Liddle4 Contributor
Liddle4
Posted

Hang in their. We were failure to thrive for 7 years. Positive blood test and then a negative biopsy. Went to Gluten Free and we are doing great. They say the biopsy is not great because at this age the damage can be spotty and they can actually take healthy tissue by mistake. I would try gluten free. We have not hit the growth charts yet but we are headed that way. It is hard and if you need support email me directly liddle4@yahoo.com, I havge a lot of great food ideas and recipes for kids. Go with your motherly instinct it will be best for your family and your child!

grainfree Newbie
grainfree
Posted

I would have eliminated bread from my diet at age 6 months. A fussy eater when cereals were introduced. An aversion to bread my entire life. Perhaps my health would be better today, perhaps not. Pressure from society to conform is great when in dining circumstances. Consider that pressure is even greater when they are teenagers and vulnerable to drugs and alcohol. Consider that the mortality rate is higher for persons with celiac disease. I would have eliminated bread from my diet at age 6 months.

celiac-mommy Collaborator
celiac-mommy
Posted

My son's biospy was negative too, but since he has a sister who had glaringly positive results and an extreme dietary response, our ped's GI diagnosed him anyway. He is a different kid-100%. I thought he was autistic before... He also went from the 10% in height and weight to the 75% height and 50% weight in less than 1 year!

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fripp017 Apprentice
fripp017
Posted

I am right there with you, only I have two children! My daughter is 26 months and my son is 4. They both had the endoscopy and biopsies taken in July. They both came back negative. I put them on the gluten-free diet and they are so much happier. My daughter sleeps better, she rarely has rashes anymore, and she is just better. My son is alittle bit harder because he has been eating gluten for longer and doesn't quite understand why he can't have certain foods. I have to tell him that the doctor says that he can't eat that food only "special" food, which is the gluten-free kind lol. My biggest worry too is school. He went to pre-school last year and is returning again this year. Only this year he is on the gluten-free diet with no diagnosis. I wish more doctors would study the research and be like Celiac-mommy's doctor and diagnos based on gluten-free diet results. It make alot more moms lives' easier.

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