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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,513
7/20/09 3:15 P

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Welcome Newbies. Hi to everyone. I do not have anyone as a confirmed celiac in my family. I am fatigued to an extreme level. I avoid sulfur, sulfites, sulphonamides, processed foods with preservatives, additives, colorings, thickeners, gluten, caffeine, a food strong in L-arginine content, and all commercially dehydrated foods. I do not eat at restaurants but I go to be social. I take a mixed program of vitamins and minerals, and supplements guided by a doctor. I have had headaches for forty years. When I see a doctor, I expect to be offered a drug which I do not take. The pain is severe enough to warrant trips to the emergency room, but I have learned that they do not have the answers. I have drastically altered my diet to remove the causes of my head pains. Now if I hurt in the head I know the cause. I take only one MD prescribed medication in my program but consume a few special pharmaceutical grade blends of herbs, complex vitamins, and mineral products, and also three common hormone replacements. My lab tests are still improving and I hope to get my energy back. My food diet is strict but I do not avoid a food unless I have challenged it in the rotation diet.

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FIRSTFERRET's Photo FIRSTFERRET Posts: 425
7/16/09 4:11 P

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After beginning to eat GLUTEN again to have the biopsy to once and for all confirm CD, I can attest to the definite fact that GLUTEN does cause migraines. Felt like someone stuck a burning coal inside my brain. OMG, I wanted to die. My S/O said that I asked if I could a couple times.

Depending on your body chemistry, artificial ingredients, "natural" flavors, sulfites, nitrites, cured meats, cheese, tomatoes, bell peppers, and many other foods can also trigger migraines. It can be a long or a short list, but GLUTEN is definitely on it for some of us.

Hope that helps, glad you are getting the test. Mine is on the 20th.


"When you get to the end of your rope, tie a knot and hang on." - Franklin D. Roosevelt (1882-1945)


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PRAYERMAMA SparkPoints: (5,345)
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7/14/09 11:42 A

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In todays world with so much over processed foods especially in the wheat department it would do us all good celiac or not to avoid wheat as much as possible.
and please note that the increase in soy allergies is growing quickly due to its addition to many many products so be sure to watch that! I am now vry allergic to soy.

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BAILEYS7OF9's Photo BAILEYS7OF9 SparkPoints: (120,890)
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7/14/09 11:00 A

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emoticon emoticon to the Team and glad to hear you are going for the tests.

I did not go for the biopsy as I felt horrible going back on gluten for the blood test that I knew I was better off w/o gluten. There is no other Celiac issues in my family.

Edited by: BAILEYS7OF9 at: 7/14/2009 (11:01)




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MEGS81's Photo MEGS81 Posts: 358
7/13/09 9:23 P

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PRAYERMAMA, that's really helpful to know, thank you. It's encouraging to know that making such a big life change could really pay off. I am getting so many migraines that it's really affecting my functioning and quality of life. My neurologist is having trouble finding a medication to help me and I don't want to be on so many medications anyway.

DOTSLADY and GFNOMAD, thanks for your posts. After reading your suggestions and doing some more research I decided to get the testing before going gluten free. I have an appointment with my primary care doctor tomorrow to get a referral to GI. I'm also going to get tested for some other food and environmental allergens. I've been making sure to eat some wheat at almost every meal so that the test is reliable!

I hope that the testing proves to be helpful because I know there is some controversy about what tests to do as well as false negatives and false positives. Even if it does come back negative I am going to try a GF diet.

I am getting a PhD and don't have much free time but I need to do a lot more reading about wheat sensitivity/celiac/gluten - there's so much to know and it's hard to know what information to trust.

Thanks.




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7/13/09 5:27 P

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GF has , as far as I can tell, reduced my migraines. I average less than one a month now but 2 years ago when I was not eating GF I had several every month, sometimes more. But with my slow metabolism my response to foods i ate could take up to three days between cause and effect. Now I can watch 1 to 3 days aafter a gluten food and see my reactions. migraines being one of them.

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DOTSLADY's Photo DOTSLADY Posts: 10,018
7/12/09 1:07 A

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I would test before the diet also. That's just me. It's just easier to cross it off your list and then move forward. If it's negative and you cheat, you don't worry about cancers - but if you don't test, then would you really stay gf for life with the same conviction? There are many symptoms as Nomad mentioned. I've read people who think they have no symptoms have tested positive - there are no false positives from what I've read. There are "inconclusives" and false "negatives."

I have to wonder if I'd have been positive when my symptoms were way less than by the time I 'was' diagnosed. I'll never know. Would you test every teen with depression and eczema, and would they be positive? Hmmm. I'd like to do a study! :)

I feel like I eased my way into all my symptoms very insideously. Anyway, that's my two cents.

I had migraines and I'd say it took months, not weeks to get rid of them. I was iron deficient w/out anemia. I think that's why, because at first my headaches were around TOM and blossomed from there. But everyone's different.

I also have hypothyroidism. My belief is a percentage of people with hypothyroidism get it because of lack of nutrients/nutrition, whether from poor diet or malabsorption. If I'd known about gluten-free diet around the time I was diagnosed (and ironically I did by-proxy do a gf and sugar-free diet for about a month - felt so fab, but didn't "know" I had celiac, so because of the busyness and stress of moving, fell off the wagon), I may have saved my thyroid. It's way too late now. Initially, I had to lower my Synthroid dose and I've been pretty steady after about a year of changing it.

I didn't have abdominal pain. The GI symptoms came on much later (the IBS-D-ish). Anyway - I've gone on. My BIL didn't think he had it for years. He finally got tested and was positive. Weirder things have happened. :P

Good luck with your experience.


Book: Living Gluten Free for Dummies by Danna Korn.
Online: www.glutensensitivity.net

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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MEGS81's Photo MEGS81 Posts: 358
7/11/09 11:31 P

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I've read that the gluten tests can be somewhat unreliable and that going gluten-free for 2-3 weeks can be fairly diagnostic, so I was going to try that. From what I know of it (which admittedly isn't a ton) I'm pretty sure I don't have celiac because if I did I'm thinking I'd be a LOT sicker - my thought was that if it's related, it's more of an allergy or intolerance. My CBC, sed rate, and CRP have come back normal, so nonspecific indicators look OK. I don't have any abdominal pain or GI symptoms.

If you or others have better or more information about the testing or trying a GF diet, it would be welcome!




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GFNOMAD's Photo GFNOMAD Posts: 1,498
7/11/09 7:29 P

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They are all related. Since you have family members who are celiac, you really should be tested before going gluten free to know if you are celiac or gluten sensitive. If you are, then it must be a 100% gluten free diet for life.
It is not something that is played around with, or I'll just cheat or this little bit won't hurt me. It really will, you just may not be able to see it.
There are now 300 symptoms associated with Celiac Disease.

Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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MEGS81's Photo MEGS81 Posts: 358
7/11/09 1:02 P

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Hi, I am a new member trying to go wheat free/gluten free for a bit to see if it helps with migraine headaches. I also have been diagnosed with systemic lupus and autoimmune thyroid disorders. There is some celiac disease and wheat allergy in my family and I'm curious to see whether it might be contributing to some of my health problems. Have any members here seen relief from migraines or autoimmune disorders when their celiac or gluten allergy was diagnosed and treated?




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