Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Does anyone know if Celiac can present exclusively with Non GI Celiac symptoms? Dizziness headaches fatigue etc? My Allergist said no but I'm curious.
It runs in the family yet my blood tests were equivocal and negative, and my endoscopy was negative.
Posts: 1010 | From Mars | Registered: Feb 2004
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when i was first trying to find out what is wrong with me, someone mentioned celiac disease, and there are also "alot" of non-gi symptoms associated with celiac as well.
i too have headache, fatigue, vertigo and neck problems, amongst other things but you can check out the healingwell.com communities, they have a subgroup for celiac.
good luck, let me know what your find.
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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Symptoms of celiac disease may include one or more of the following:
gas recurring abdominal bloating and pain chronic diarrhea pale, foul-smelling, or fatty stool weight loss / weight gain fatigue unexplained anemia (a low count of red blood cells causing fatigue) bone or joint pain osteoporosis, osteopenia behavioral changes tingling numbness in the legs (from nerve damage) muscle cramps seizures missed menstrual periods (often because of excessive weight loss) infertility, recurrent miscarriage delayed growth failure to thrive in infants pale sores inside the mouth, called aphthous ulcers tooth discoloration or loss of enamel itchy skin rash called dermatitis herpetiformis
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Before I had Lyme, I was the newsletter writer for our local Celiac Disease support group.
I am including just one link below with some symptoms and questions. This is from the national Celiac Sprue Association (the disease used to be called Celiac Sprue but is now referred more often as Celiac Disease).
Some patients do have non-GI symptoms that can be quite neurological (brain fog, balance issues, etc), a small subset have the skin form called Dermatitis Hepetaformis which causes rashes if any topical product with gluten is used (shampoo, etc).
There are many excellent Celiac Disease organizations and a few experts at certain medical facilities - such as at Columbia University.
Some websites to google (I don't know exact URLs for all)include the Gluten Intolerance Group, Celiac.com, and the Celiac Disease Center at Columbia University.
There are several chat groups having to do specifically with neurological Celiac Disease or Gluten Ataxia, so you can google those.
Even though your blood tests and endoscopy were negative, you could also have genetic testing done to see if you carry one or both of the main Celiac genes - HLA-DQ2 and DQ8. If you have them, it does not mean you will develop Celiac Disease - about 30 percent of the population has one or more of these genes and doesn't get Celiac.The best lab for testing is Prometheus Labs here in my hometown of San Diego.
But if you don't have the genes, you cannot get true autoimmune genetic celiac disease, however you could still have some type of gluten allergy or sensitivity.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I thought I might have celiac disease, since no one else can find anything wrong with me. I have numbness and tingling in my hands and feet, along with burning sensations all over my body.
I did have a blood test which came back negative.
What was the biopsy like? I just had a spinal tap and I am a little over being poked!
I finally just gave up everything with gluten in it. What a pain! I sure would love a chocolate chip cookie.
Next I am supposed to give up sugar and dairy. But, one thing at a time.
PS
My husband has celiac disease. He has major gas about two minutes after he eates something with gluten in it.
Posts: 20 | From NC | Registered: Jun 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hey JC,
For those chocolate chip cookie cravings...
If you have a Whole Foods health food store anywhere near you, they have what I consider to be the best-tasting gluten-free chocolate chip cookies. I give in every now and then.
Whole Foods recently built a completely dedicated gluten-free bakehouse in North Carolina, where they make a whole line of breads, pies, cookies, pizza crusts, etc - you know, all those things we with yeast shouldn't eat!
They are very expensive, especially for those of us on the west coast because we get charged a higher price than the Whole Foods customers that are nearer to the North Carolina facility. But given that you live in the same state as the facility, it should be a bit cheaper at those Whole Foods stores.
But when I have to have a chocolate chip cookie, that's what I buy!
OK, now I've made myself hungry.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I didn't have any GI symptoms with my g;uten intolerance, my tests were negitive. My llmd said he still believed I had celiac.
I was able to reduce my wheat intake about 95% and felt much better, my anemia finally went away.
When I gave up wheat completely this past June ALL my joint pain and stiffness left in a few weeks. My energy level returned. I also gave up most refined carbs at the same time including corn. So more may be bothering me too.
Last week I ate wheat one night to test my reaction. What I thought were my seasonal allergies came back the next day. They are easing now. Four days later I had joint pain and stiffness, it is easing now too.
previous to June I had done several months of diflucan after long term abx. I think the diflucan played the initial roll by getting the yeast out. Again I didn't any of the symptoms you would think of as a yeast infection.
Posts: 1572 | From Pa | Registered: Jun 2001
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Jc, I was under sedation so I didn' feel anything. Saw it on the video screen ad it's looked bizzare sci fi.
Posts: 1010 | From Mars | Registered: Feb 2004
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