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Help A Grandmother To Help An Expectant Mom

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Posted 19 February 2004 - 01:31 PM

:unsure: I need help I am a diagnosed celiac. My daughter refuses to have a genetic test. She has a rash, thyroid problems, blood sugar problems, has had bone problems , possibly lack of bone formation, severe morning sickness etc. Many of the symptoms I had before diagnosis, when I was having children. She took a blood test over a year ago and doesn't see it as a snapshot in time. How do I convince her to have a genetic test? I promised to leave her alone after that. If she is genetically inclined, I would have to figure a way to convince her to have the gluten -sensitive stool test. So help me do it, Please>
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Posted 19 February 2004 - 04:36 PM

What kind of blood-work did her docs do and what were the results??

One way to convince her is to let her read some of the post here on this board. If she has a lot of GI symptoms then she should realize that going gluten-free will improve her health 100%! I wish you luck in trying to convince her to take charge of her health and she also needs to realize how dangerous it is if it's left untreated!

Good luck to you
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Posted 17 June 2004 - 09:21 AM

I think your daughter is living in denial. It looks like she has a lot of health issues. How could she just think of herself. She is going to have a baby, who will be affected very much by her health. Her selfishness may harm the child. I'm a mom. I was diagnosed with Celiac's 9 /12 years ago, after the birth of my second son. I was very sickly during the pregnancy, but I was being tested for all kinds of ailments. They did not discover Celiac's until he was 8 months old. But, my point is that I was seeking help for my problems. I also have Hypothyroidism, which was not found until May 2003. This is also associated with people who have Celiac's. I have also recently given birth to my daughter on May 3. I was blessed, because she was born a healthy baby. I can't imagine living with myself, if I had as many health issues as your daughter, and not finding out what was ailing me. It's a sad set of circumstances for you to have to endure. Do as Stacie suggested, have her read these responses. Maybe strangers can knock some sense into her. I wish you luck in your quest. I hope she changes her mind, and gets tested. Keep us posted.

Vicki :)
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Posted 02 October 2004 - 05:27 PM

Good for you, your daughter may still have time to regain her health.

Perhaps telling her that a gene test only points her in the right direction and does her no harm. BTW, I have had all of her symptoms too.

I am a person who believes I had undiagnosed gluten sensitivity since childhood. I was diagnosed with hypothroid at the age of twelve and I am now 39. My symptoms and lack of proper development were the first clues, yet undetected. Now as an adult, my signs and symptoms are endless. One simple blood test, stool test and gene test confirmed my symptoms. December of 2002 I received my answer-gluten sensitive/casein sensitive with no malabsorption but still hypothyroid with another diagnosis, adrenal fatigue!!!! I was 37 year young!!!!!

I needed to do this in my time, the fear and denial were strong. Knowing the future of an undiagnosed problem and the fact that I had a non-invasive choice made the final decision easier. May I strongly suggest that a thyroid test be done on the baby for the benefit of the child.

May the root of the problem be revealed and may the baby get the right care he/she needs and deserves. :D
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Posted 02 October 2004 - 10:25 PM

My son has a severe gluten intolerance that caused him to drop from the 80% in weight and height to the 15%. He eventually ended up in the hospital for 12 days from an intestinal crisis, where we stumbled across Celiac disease. All the pieces fit for him.. malabsorption, anemia, lack of growth, bloated belly, headaches, loose stool, lactose intolerance... yet, he was NOT diagnosed with Celiac's disease. His bloodwork showed only elevated IgG and his biopsy came back "inconclusive."

I put him on a gluten-free diet, even though we were advised to put him on a regular diet, and lo and behold he thrived. ALL the symptoms that he had before, disappeared. He grew 4" in 6 months and gained 7 pounds. When he accidentally eats gluten, he gets very sick, with nausea, cramping, diarrhea, headache, moodiness, gas, bloating...

In search of validation for his condition and his obvious gluten intolerance and "Celiac-like" symptoms, I figured he HAD to have the Celiac genes, for sure. Well, I had him tested and he doesn't have either one [DQ2 or DQ3 subtype 8 {DQ8)] he has DQ3 subtype 7.

All of this is to say that regardless of current conventional testing, nothing short of a miraculous response to a gluten-free diet is how we arrived at our diagnosis. My son doesn't eat gluten because when he does, he gets sick.

So, what I'm trying to share is that if you are putting all your hopes in a genetic test to convince your daughter she needs to go gluten-free, it may backfire and convince her you're totally crazy.

I suggest having her read the book "Dangerous Grains." It gives a clear picture as to why more than just diagnosed Celiacs need to avoid gluten.

And remember, people all have to make choices. Although you and I know that a dietary change could do her a world of good... if she is in denial and does not understand or want to understand the ramifications of her dietary choices... it's her choice. Some people still smoke, drink, do drugs, eat fast food and sugary sweets all the while KNOWING it is not good for them. It's a lifestyle choice. It sure doesn't help that the choice could be life shortening.

God bless and I wish you the best in helping your daughter try to help herself by researching her symptoms and by experimenting with a dietary change!

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Posted 02 October 2004 - 10:41 PM

RSAVAGE: You asked how to convince your daughter to have a genetic test. I agree with other posts here about showing your daughter info from celiac websites as well as posts here. However, I assume you mean Enterolab tests when you mention genetic test and gluten sensitive stool tests. I did that whole set of Enterolab tests and recall that the genetic test and stool sample test were simplest, least time consuming, least invasive medical tests I have ever taken. However, those were NOT cheap (and not covered by my health insurance). So perhaps the best way to convince your daughter to do the tests is PAY for those tests yourself, order them for her and help her package and send the results back to the lab. Most of all, order and pay for those tests for your daughter. Then she will have no choice but to do the easy part of taking the tests. ;)
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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