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Still Waiting For Diagnosis

cam'smom

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cam'smom Rookie
cam'smom
Posted

I am so relieved to have found this site! And am desperately hoping that someone will be able to identify with my son's story.

It all started in January, I won't detail everything here, but my 1 year old had loose, stinky, huge stools with microscopic amounts of blood in them - usually about 4 nappies a day. The ped said it could be celiac but the blood test came back negative. However I cut gluten out of his diet and the stools decreased from 4 nappies a day to 1, and within a month were back to normal. So, he has been gluten free now for 6 months.

The only thing is we still don't know for certain that it is celiac. There have been a few times when he has eaten food with gluten in and then his stools are all loose and horrible again, with tiny black flecks in them. This also happened in the beginning and the doc tested them but said the flecks were not blood. Has anyone else experienced this? Once the stool firms up the flecks go away, so they seem to be related to when he eats the wrong food.

I am very careful with what I feed him and at one stage I was making him a gluten-free bread recipe that contained yeast. He started reacting to something and I am wondering if it was the yeast - has anyone heard of yeast being a problem with celiacs?

I would really appreciate it if anyone could respond if their little one's story is similar to mine. The ped said that celiac is very unusual and unlikely to be the problem, but it seems to me that it is the problem. And, she has no idea what else it could be.

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ShayFL Enthusiast
ShayFL
Posted

Welcome to the board!

I hope someday they have a way to dx Celiac without blood/biopsy that is more certain. For now (especially with children under 6) the best we can do is test (and if Neg) try the diet. You have had a positive response to the diet and that is your answer to the problem. Thank goodness you caught it early before a lot of damage set in and other autoimmune diseases showed up.

Whether it is Celiac or Gluten Intolerance the solution is the same....gluten-free diet. If it were me and mine, I would ask for genetic testing for Celiac. Genetic testing DOES NOT dx Celiac. But my thinking (and this is just my opinion) is that if my child obviously responds poorly to gluten and has Celiac genes then I can feel really SECURE in my decision to keep him gluten free for as long as he lives with me. Having a Celiac gene does not mean you will develop Celiac. But with an obvious sensitivity and the genes, it just makes sense to avoid gluten.

At some point when you can no longer control his eating, he may decide to eat gluten foods (teen years are suspect) and if he reacts badly he will have to decide for himself if he wants to continue eating it (and if he wants to test for Celiac).

All you can do as a Mom is focus on the now and keeping him healthy until he is an adult. gluten-free sure looks like the right thing for you.

Ask the Ped if he can ease your mind even more by ordering the Genetic Test.

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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 😅
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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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