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Dd Still Not Absorbing Nutrients?


ptkds

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ptkds Community Regular

My dd (almost 3) has been having some problems lately with lots of bruising and bleeding gums. One of her blood tests came back abnormal (her PT time was longer than it should have been). So we met with a hematologist today. She is running more tests, but when I asked her what it could be, she said it might be from malabsorption due to her Celiac disease. She said that she may not be absorbing enough Vit. K to produce enough clotting factors.

The thing is, we are really careful about the diet. She has been on it for 1.5 yrs, along with the rest of the family. She very rarely gets glutened. She eats a good variety of food. Could this actually be from malabsorption? She has been doing so great since going gluten-free.

Any ideas?


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jhow32000 Rookie

Some people don't heal, some don't heal for years. A big problem might be taking her off of gluten and putting her on a gluten free diet that is high in processed gluten-free foods that are hard to digest. I recommend--highly-- the specific carbohydrate diet for her. Basically it cuts out dairy and any carbs that are not monosaccharides. you can google it if you are interested. Otherwise I see no other means of helping her gut heal so she can absorb her nutrients.

jhow32000 Rookie

That's odd, I thought I had already replied to this post. You absolutely have an option in the Specific Carbohydrate Diet. I recommend it highly. It is a gut healing diet for Celiacs, Crohn's, Ulcerative Colitis and is now being used for Autism and Schizophrenia. It takes all of the hard to digest foods out of the diet and only leaves the very easy ones, simple sugars. I did really well on it. You daughter should not be eating gluten-free processed foods.....these are very highly processed and will be much too hard on her. That is a big mistake alot of people make, going from wheat processed foods to loads of gluten-free processed foods and then acting like they've done themselves a favor. Refined sugars and dairy high in lactose will also be too much for her. You should google 'SCD' and order the book. If you don't want the book there are tons of recipes online, you just need to follow the basic tenants of the diet.

feedmykids Rookie

So Sorry! I say this a lot, But have you had her tested for Cystic Fibrosis? I have a niece with CF and have had two COusins die from it. I have seen first hand just how similar CF and celiac really are. WE did a LOT of testing with my DD to be sure of her Diagnosis, and we sometimes still wonder. Here are a few of the similarities, THick Mucus, Malabsorbtion, pale skin, growth failure. Does she taste salty? The amount of salt her body is making is a good clue - If she has cF she will taste salty. Our Ped. GI wouldn't see her for celiac until we had her tested for CF first, just to rule it out. HTH.

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    • RMJ
      Yes, it would make sense to go mostly gluten free, since it gives your troubles.
    • SMK7
      Yes, I made an effort to eat extra gluten at least 3 weeks before the endoscopy. I probably ate a some amount in the weeks before that. I had diarrhea, which resolved once I cut back after the endoscopy. So I think it would make sense to go mostly gluten free?  
    • RMJ
      Yay for the normal biopsy! Thanks for the follow up. Were you eating gluten prior to the endoscopy?
    • Scott Adams
      I think that with the elevated antibodies found in past tests, and a negative biopsy, you are firmly in the NCGS camp. If symptoms go away on a gluten-free diet it would be confirmation that you should likely stay on the diet.
    • SMK7
      Just to follow up on this, a year later I had endoscopy, the result was mild chronic gastritis, the initial endoscopy looked normal and the biopsy was normal.  
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