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I Need Advice And Help For A 3 Year Old!


PattiB

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PattiB Newbie

Hi! I am a new member and I really need some help. My daughter is 3 1/2 and has not been able to have a normal bm since she was 1 1/2. All of the doctors tell me that she is constipated and that it is normal. Believe me, this is not normal. She has contraction like pain while trying to poop and after all of the hours in severe pain she only has leakage that feels almost as though it is grainy and/or sandy. It absolutely breaks my heart and I don't know what to do anymore. She does not eat or drink dairy, I have not gotten rid of gluten yet. I just wanted to get this out there to see if anyone's child has been going through this heart wrenching situation! Please respond if you have any information.

Thanks!!

PattiB


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gfgypsyqueen Enthusiast

One of my kids went through that for years. It was horrible. The Drs put her on adult doages of stool softeners. Warning labels of over dosage from the pharmasist and all. I got lectures on how to feed a growing child from the DR. Just terrible experience for everyone. In the end the problem was dairy. Once all dairy was eliminated, stools have never been a problem. She is now allowed some cheeses once in a while with a lactaid. This child is not a celiac, but does have food allergies. What helped until she became dairy free is over load the child with water and foods that cause diarrhea.

The next child had the opposite problem. Diarrhea for months on end. Once again Drs said not to worry. When she stopped growing they said she was petite. Don't tell me that when she is under 2 and not doing well. Finally forced a Celiac panel and biopsy. Inconclusive. She has a milk allergy among others. After making her strictly gluten-free/CF and everything else, she is growing and has normal poops.

So for your child, pursue Celiac biopsy and testing. Get gene test too. Sometimes the results are not accurate for young kids. Try an elimination diet. You said child was dairy free now. I would bet some other food is causing problems. (Allergist skin prick tests did not pick up the dairy problem for my oldest.) If nothing else fixes the problem, try the gluten-free diet. I assume someone else in the family has Celiacs which lead you here.

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    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
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      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
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      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
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