Colleen's blog

I am actually newly diagnosed and cannot help but review the past and be upset. I look back and remember being told I was a hyperchondriac by family and doctors it's in your head its' your depression. Now many yrs. later and very ill I have an answer I wish I had earlier. I hope now that this becomes a routine test for children during thier annual appts. I fear my G.I. consult and tests to come, Thou, I try to be positive...... I can't help the What if's. I have too young boys one of which was born Blind....I did not have the 2 causes Gestational Diabetes or exposure to toxic substance could the fact that I had this disease all this time and eating gluten,wheat,soy dairy all of which I am intolerant of be the toxic substance that caused my sons birth defect. I need to research more. Both my boys show symptoms of the disease and will be tested in May. My mom is just as always unsupportive my inlaws are always supportive and I have siblings that have always had the same issues but b/c of how I was treated they never bothered till they got older to seek help. I can't express enough to them they need to be tested to be on the safe side either way. I have to remain positive b/c when I found out I cried and my boys were very upset. I am still upset I know now I'm not crazy and I now have to switch over to an expensive lifestyle to be heathy I am cheap. This is very hard for me. I will continue to try and remain positive. So all in all I feel your grief. I am there too.

[quote name='Jkrupp' date='Apr 16 2009, 02:05 PM']I am actually newly diagnosed and cannot help but review the past and be upset. I look back and remember being told I was a hyperchondriac by family and doctors it's in your head its' your depression. Now many yrs. later and very ill I have an answer I wish I had earlier. I hope now that this becomes a routine test for children during thier annual appts. I fear my G.I. consult and tests to come, Thou, I try to be positive...... I can't help the What if's. I have too young boys one of which was born Blind....I did not have the 2 causes Gestational Diabetes or exposure to toxic substance could the fact that I had this disease all this time and eating gluten,wheat,soy dairy all of which I am intolerant of be the toxic substance that caused my sons birth defect. I need to research more. Both my boys show symptoms of the disease and will be tested in May. My mom is just as always unsupportive my inlaws are always supportive and I have siblings that have always had the same issues but b/c of how I was treated they never bothered till they got older to seek help. I can't express enough to them they need to be tested to be on the safe side either way. I have to remain positive b/c when I found out I cried and my boys were very upset. I am still upset I know now I'm not crazy and I now have to switch over to an expensive lifestyle to be heathy I am cheap. This is very hard for me. I will continue to try and remain positive. So all in all I feel your grief. I am there too.[/quote]<br><br><br><font size="3" color="#0000ff" face="Courier New">I
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I completely understand and feel your pain, now you have to get on with waking up to real life of not being sick which isn't easy either when you spent so many years ill. Knowing how sick I was and knowing that I could not have carried a pregnancy; nothing would surprise me in relation to your instinct about your son. I am so sorry! I am just so sorry that we have all had to suffer years of overriding our instinct as women that something was wrong. I think all celiac's can relate to the being called a hypochondriac and oh you just have depression, if I JUST had depression then why didn't the 20 different kinds of medication (that all had gluten) in them help me? Because it wasn't organic depression at all...I don't eat gluten now and besides dealing with the past, I don't have depression and I don't take any medication for anything!! I just really think that the nightmare stories need to be heard because if I had come across the info in my years and years of reading books like 'I am not crazy, I am just Creative' or books about STD's (which I was sure I had) and psychology books and medical journals etc. I may have been saved from the many years of unnecessary suffering. Our stories need to be heard!!!!!!! The other reason is that if you told me that the reason I couldn't get out of bed was because I ate a pizza last night, I would think you were crazy...now I know just how sick that can make someone that can't eat wheat! What a bloody nightmare that was! Also, I have loads of trust issues now, my husband says I don't trust anyone...either would he if he went around begging for an answer out of suffering every single day and no one in the medical community did anything to help!! I feel your pain! All the best to you!

I just wanted you to know....I am trying to deal with this in the best way I can educating myself. I will continue to educate myself in the same manner I did when my son was diagnosed w/ Optic Nerve Hypoplasia. I found a link to nueral tube defects and untreated celiac. There are many links to other disorders as well. I signed up with the birth defects registry in Fla. for research on the link between Celiac and birth defects. I am pretty sure I am not the only mom w/ a child w/ this disability registered. I just wonder about the others parents having Celiac or not. I hope this will lead me to stronger evidence to the link between the 2. I am very hopeful. I have calls out to Drs. that head research on the Optic Nerve and other research foundations I feel this needs to be done. I also feel that Early detection is the Best detection the sooner we know the better. This is what I've always been told from the time Robert was diagnosed blind to present. How can we push for routine testing in Children? Is anyone willing to help w/ this?

Absolutely I would help! I think they do trst all children in Italy?? The one problem is still the testing as some people come back false negative! I wish you all the best. !(1 there is a connection between pregnancy issues and fetal developement, my friends child was born with no soft spot and she now knows that it was from untreated celiac. :onestly my heart goes out to you!

Thanks so much. I really want to push for this b/c we may have been able to prevent some of these defects (key words may ) not 100% no one ever knows for sure but if there is a possibility then why not. I just need a direction to go in for the testing. Where do I start? I have entered as many studies and researches I can find on the link between the 2 but this is not enough for me. I need drs. to step up.

Hi email my private email, I have someone that may be of interest for you to talk to. My email is info@colleencurrantrading.com

Hang in there as I am sure it is all very overwhelming!

CC

[quote name='Jkrupp' date='Apr 18 2009, 04:37 PM']I just wanted you to know....I am trying to deal with this in the best way I can educating myself. I will continue to educate myself in the same manner I did when my son was diagnosed w/ Optic Nerve Hypoplasia. I found a link to nueral tube defects and untreated celiac. There are many links to other disorders as well. I signed up with the birth defects registry in Fla. for research on the link between Celiac and birth defects. I am pretty sure I am not the only mom w/ a child w/ this disability registered. I just wonder about the others parents having Celiac or not. I hope this will lead me to stronger evidence to the link between the 2. I am very hopeful. I have calls out to Drs. that head research on the Optic Nerve and other research foundations I feel this needs to be done. I also feel that Early detection is the Best detection the sooner we know the better. This is what I've always been told from the time Robert was diagnosed blind to present. How can we push for routine testing in Children? Is anyone willing to help w/ this?[/quote]

Wow. I was recently diagnosed with Celiac's. Until reading your post I hadn't thought of a connection, but my son was born with a cataract in one of his pupils. I am interested in finding more information on this now.