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Old 03-25-2010, 12:21 PM   #1
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victimsdad HB User
My daughter's story -- she has celiac

Hey all

I just decided to reconnect with these message boards. My daughter had a constant 24/7 headache for 18 months. She never quit college, graduated top of her class. she is determined to live her life without burdening others. My point in writing...her cause is treatable!

My daughter has CELIAC DISEASE. It is an autoimmune disease where your body attacks the small intestine whenever you eat ANYTHING containing wheat barley or rye. Even in the smallest amounts.

She is recovering slowly, average is 18 - 24 months. Her headache only returns to full strength when she is exposed to gluten.

Many of you may be suffering from the same thing. The only treatment is to avoid eating, washing, cooking, exposing yourself to anything containing gluten! We spent 25k+ looking for a cause and cure. I was convinced it was lyme disease. Mayo Clinic diagnosed her. Our family doctor, whom we have a great relationship with, has 2 other celiac patients and did not recognize the problem. The test to tell your doctor to use is a TTG, Trans-Titer-Glutenase. Cost, less than $100.00. If positive, then it is followed by an endoscopy to confirm it.

If your headache was not caused by an accident, PLEASE refer to Celiac sites and check the symptoms against yours. You may be able to escape the headache pain after all.

Hope this helps someone out there.

Last edited by mod-anon; 03-26-2010 at 07:49 PM. Reason: starting a new thread with this post.

 
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Old 03-27-2010, 04:15 PM   #2
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Re: My daughter's story -- she has celiac

I also have celiacs. I spent about $10,000 trying to figure out what was wrong. Doctors never figured it out. I asked for the celiac test after doing research. A few of my relatives also have celiac symptoms and their doctors literally laughed at them when they asked for the test and didn't give it to them. One of them went off gluten without a positive diagnosis and is doing better. My niece continues to let her daughter eat gluten even though a skin test showed an allergy. So frustrating that she doesn't listen to me. I worry about her future. Glad you figured out what was wrong with your daughter.

If the 3 million americans walking around with celiacs knew they had the disease and even more people being gluten sensitive, we would probably be a healthier nation.

Beth

Last edited by Administrator; 03-27-2010 at 08:36 PM. Reason: removed political comments

 
Old 03-28-2010, 11:40 PM   #3
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kjfisher HB User
Re: My daughter's story -- she has celiac

Thanks for this information, I am going to check it out. I have migraines daily, I rarely go a day without one. It is worth trying to avoid gluten to see if it helps.

 
Old 04-02-2010, 05:16 AM   #4
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hunnybunn54 HB User
Re: My daughter's story -- she has celiac

Thank you for this post. I haave been suffering from severe headaches since I was really little and I get them a cuople of times o week. I have been to a neurologist but they can't figure out what is triggering them. this gives me something to talk about.

 
Old 04-02-2010, 05:50 AM   #5
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model1979 HB User
Re: My daughter's story -- she has celiac

i am sorry for ur daughter. i have severe IBS with gluten issues as well. the only i was able to rid the symptoms was to really really cut down on all carbs and sugars. i too used to suffer from headaches and found this really helped me. i also added more protein and healthy fats to my diet. give it a try. it took about 4 weeks to kick in.

again, sometimes docs think they know everything. until they realize we are all NOT textbook cases. good luck

 
Old 04-02-2010, 06:32 AM   #6
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hunnybunn54 HB User
Re: My daughter's story -- she has celiac

I just found out today of family history of celiac diesease so I am going to demand she is tested for it at her appointment today. Thank you so much.

 
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