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millersinkenya

Member Since 14 Sep 2011
Offline Last Active Mar 09 2013 10:58 AM
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Topics I've Started

Iga Deficient- Question

01 December 2011 - 06:36 PM

My daughter, 14 months, had bloodwork done. My son is dx celiac (-BW, +ENDO), so we had her tested because she is showing so many of the same signs that he had. Her Immunoglobulin IgA came back low- the doctor says she has IgA deficiency...

What does this really mean? I mean, I understand it all, but as far as her life goes, do we need to be overly protective or overly cautious regarding her health? Just looking for thoughts and experiences for those of you who have dealt with it.

Serious Behavioral Issues

12 November 2011 - 10:52 PM

I am not sure where to even start. My son, almost 4 years old, is dx celiac as of August this year. Ever since he was young, we have had so many issues with his health and his behavior. He is so intense, screams or hours, hits, kicks, etc. He can be so happy one minute and then pissed off for the littlest things. After we got the diagnosis, we immediately went gluten-free. After two days, he was a new child. He was happy, so sweet, thoughtful, did not get mad at hardly anything... was a normal kid. This lasted for almost three weeks. Then he got accidentally glutened. Since the middle of September, we have really been struggling again with his behavior. I think he is VERY sensitive to gluten since cutting it out, and I am not sure what else. I don't know what to do with him. Honestly, I wish I could have him put in the hospital and given something (I don't even know what) for nutrition that is non-allergenic and let his body just clear out. I know it sounds harsh, but how do you take a four year old off of EVERYTHING and slowly add stuff in and see the reactions they are causing? How do you find out what they are sensitive to without doing something so drastic as to cut out all foods for a while and let them clear out? I don't know if it is gluten from somewhere or milk or soy, etc. I am just so lost and tired with it. I am worried that if it is not his diet, then maybe he has some serious issues that we need to address other than by diet. But, I am a big believer that our diets have so much to do with our health. The kicker is that we live in Kenya and we do not have access to many things here.

If you have had a toddler with behavioral issues, how have you tried to see the connection with that and food?

Endo Question

21 October 2011 - 06:52 AM

My 12 month old daughter had an endoscopy today because my son is celiac. We are testing everyone in the family. She has started to show a similar pattern as he did at her age.

The GI doc came out and gave me 4 photos from the endo today. He said that the biopsies will tell us one way or another, but there were two characteristic things he noted... there was quite a bit of smoothing out of the folds- he expected them to be much larger, but they werent. Secondly, there were white bump things in another picture. I am not sure what these are. Anyways, he wants her off all wheat ASAP (no big deal because she is refusing all food other than milk) and said that he assumes it is going to come back positive.

I am not exactly sure what he said because we live overseas and despite speaking the same language, there is a lot lost in translation- accent, different words, rate of speech, etc.

Do these two things sound like something that would come up for celiac or not? My son's pics did not have white bumps and his folds (or whatever you call them) are more raised than my daughter's picture. If you look at figure 3 on this link, click on it and it will show you 5 pics- the last one has a picture of the bumps that my daughter had on her picture... for reference: http://www.medscape....rticle/559057_3

Thoughts?

Nappy Rashes

15 October 2011 - 09:14 AM

Let's chat about rashes...

My son (3.5) has just been dx with celiac through biopsy. When he was younger, he had a persistent nappy rash- it was terrible! Bleeding, red, nothing helped it go away. It finally went away once he potty trained a year ago. My youngest daughter has started this same nappy rash in the last couple of months, about the same time his started. She has dropped from 75% to 22% in two months. The doctors want to test her for celiac as well, and she is only 12 months old.

So, the question is, did anyone ever have a terrible nappy rash on their little ones who eventually have been dx with celiac?

Help With Pathology Reports?

14 September 2011 - 03:18 AM

Hi! I am new here and I am just looking for some opinions. My son has had some major health issues for the last couple of years (he is now 3.5 years old). With out going into a lot of detail, I was wondering if anyone could look at his pathology reports from almost two years ago. We were told he did not have celiac but I am thinking that the GI doctor who told us that may be wrong. He is still having a lot of issues now and has started to get migraines for the last year. They have ruled anything out contributing to migraines and medicine is not working. He is having about 2 per week at this point. I read that celiac can contribute to migraines, so here I am! I asked the GI doctor to forward me his reports (his biopsies were read by two different pathologists) and I was shocked when on both of them, the path suggests celiac. I think he had blood work done but it was negative. He was 1y11m at the time of all of this. Does anyone know how to read pathology reports? I am including the final pages from both pathologists.

The kicker to all of this is that we live in Africa and there are no doctors here who know what celiac disease is to go and talk to about everything. I am starting him on a gluten-free diet now in hopes of helping, but I am just not really sure what the reports mean!

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