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Self-diagnosis


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21 replies to this topic

#16 ianm

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Posted 21 May 2005 - 06:29 AM

If eliminating gluten makes you feel better then don't eat it. It really is that simple. The fatigue and brain fog is a horrible way to live. I did it for 36 years. My life is so different since I stopped eating gluten that a test will only confirm what is already obvious.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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#17 bean

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Posted 21 May 2005 - 08:01 AM

Hello :)

I just wanted to comment on a couple of things:

Gene Testing -

A couple of weeks ago I went to listen to a gastroenterologist speaking on celiac disease. His take on the genetic testing was that it can only show if you *don't* have celiac disease. He said that two genes tested (HLA-DQ2 & HLA-DQ8) are actually quite common. If you have these genes it doesn't mean that you have celiac disease. People who have celiac disease always have these genes, but sometimes people who don't have celiac disease have these genes also. The only value of genetic testing (from what he said) is that it can rule out celiac disease if you do *not* have the genes (as people without these genes do not develop celiac disease). To me it sounds like a waste of money to get a "maybe"

Difference between Wheat Allergy & Celiac Disease -

There is a HUGE difference between Wheat Allergy and Celiac Disease. In March, I had an ELISA blood test to determine my food allegies (IgG & IgE). It showed No Reaction to: Oats, Barley, and Whole Wheat and only showed a (barely) Low Reaction to Wheat (Gliadin), Wheat (Gluten), Rye, and Spelt. According to this allergy test - I don't have any problem consuming glutenous grains.

But a couple of weeks ago I had IgA & tTG blood tests that were indicative of Celiac and last week I had a biopsy to confirm it.

Here's a quote from http://www.nowheat.c...rimer/intro.htm
"A common garden-variety "wheat allergy" happens when your body sees wheat as an invader and attacks it -- not your body. Symptoms of wheat allergy could be eczema (different from dermatitis herpetiformis), sneezing, increased acne, or if you have a very serious allergy to wheat, you might have an anaphylactic reaction in which your throat would swell up to the point where you could no longer breath. These are not symptoms typical of celiac disease. The main effect of celiac disease is damage to the small intestine; if you have symptoms that are caused by damage to the small intestine (e.g. flattened villi as seen in a biopsy, or any form of malnutrition that is caused by the damaged villi) then what you have is not a wheat allergy, but celiac disease. In my years dealing with wheat-free diets, I have seen very few people with a simple "wheat allergy" and lots with celiac disease, so I suspect celiac disease is more common than wheat allergies. "

My theory is that wheat/gluten allergies frequently run concurrent with celiac disease - and the patients who have both are the ones who are more frequently suspected of having celiac disease. The indicator for me was that I have osteoporosis (at 32). I don't have any immediate reactions (besides some depression/anxiety) to gluten. I would never have been diagnosed without that bone density test!

Okay... talking too much... ;) Sorry!

- Michelle :wub:
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#18 turtle99

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Posted 22 May 2005 - 08:11 AM

Hi Bean,

Talk too much? NO way, it's very educational and l appreciate you sharing your knowlegde. I'm still so new with this, trying to understand. And actually I was wondering the difference between allergy and celiac disease, just as I was reading your post. Now I suspect that I do have celiac disease, because I found that I was really not absorbing nutrients well and I always had a huge issue with digestion.

Do you think I should get a bone denisty test also? Because I'm in my 30's and I just found out about this gluten intolerance now.

Ianm,
I agree that the choice is very simple and I'm not going to let the temptation of common foods, ruin my health. I'm just so surprised that I found a place that understands the 'brain fog' experience, and all the other complaints of gluten-invasion! Now I'm seeing things so differently for the first time.
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"Turtle99"
gluten-free since may02/05

#19 KaitiUSA

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Posted 22 May 2005 - 08:17 AM

Turtle-
I am 17 and they had me get a bone density test to make sure the celiac didn't cause any other problems.Thankfully, the bone density test I had showed my growth is normal. I think it definitely is a good idea even if it is just to rule that out because one of the things that can come from untreated celiac is osteoporosis so it would be better to find out now. Are you taking calcium?
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

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Feel free to email me anytime....jkbrodbent@yahoo.com

#20 lotusgem

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Posted 22 May 2005 - 09:33 AM

Well, I was a bit slow picking up on this thread, but it was interesting reading. I am self-diagnosed, and have been gluten-free for almost a year. I had so very many of the classic indicators and have had an extremely positive dietary response. Doctors were absolutely useless to me, and don't feel a need to get an "official" diagnosis. I also had itching on my face, around the corners of my mouth, but don't any more. Ann, you're the first person that I've seen mention beer consumption and itchy skin. I figured out 20 years ago that when I drank beer, I'd have an eczema flare up the next day, with incredible itching. Saw a post recently that stated that there is seldom any mention of the connection between eczema and Celiac, though there is one. Last year, before I found out about Celiac, I had a bone density scan through a seminar at my job. I couldn't understand why my results were inferior to my co-worker's who is ten years my senior, and almost 60 years old. But I've had this condition my whole life, and you guys who are younger are so lucky to be figuring this out early before the damage is done. I say, if you are healthier without gluten, then that's all you need to know.
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#21 bean

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Posted 22 May 2005 - 09:41 AM

Turtle,

The bone density test (Dexascan) is probably a good idea. The only problem is that is is really expensive ($250) and your insurance might not cover it. If it *will* cover it - definitely do it and find out what is going on with your bones.

The good news is that I've read reports saying that after 1 year on a gluten-free diet, bone density increases up to 15%. That's huge. :) Yay!

Keep in mind that you need to take *absorbable* forms of calcium! I highly recommend Calcium Citrate - it's easily absorbed by the body (something especially important for those of us with celiac disease) and not too expensive. Whatever you do, don't take Calcium Carbonate - which is found in products like tums - it reduces the acidity of your stomach and calcium *needs* an acidic environment to be absorbed.

Also - take enough. I had been taking the suggested 1000 mg/day and the doctors suggested I increase that to 1500 mg/day. And it's also incredibly important to have the other nutrients that aid calcium absorption (Magnesium, Vitamin D, Zinc, Copper, Manganese, Boron).

Hold on - let me go find you some info ;) I'll post again soon!

- Michelle

Good luck! :)

- Michelle :wub:
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#22 bean

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Posted 22 May 2005 - 10:11 AM

(This is going to be long!)

Here's some info on osteoporosis from "Dangerous Grains" (by James Braly & Ron Hoggan):

"A related paradox of osteoporosis and celiac disease is that calcium supplementation does not help to remineralize celiac patients' bones as much as magnesium supplementation. There is comparatively much less magnesium in our bones, so this information provides an important clue to the fascinating puzzle of the impact that gluten can have on bone density.

Not only is magnesium important to the activation of bone-building osteoblasts that deposit calcium and add collagen to our bones but it is also a factor that aids in repairing the parathyroid gland. This is a gland that produces the hormones (PTH) that regulate most of the body's calcium metabolism. These hormones signal the kidneys to recover calcium from the urine, to elevate blood levels of calcium, and to activate vitamin D, which signals the intestine to absorb calcium from the food we eat. Clearly, adequate dietary calcium is of little value if we are not getting enough magnesium for the parathyroid gland to function properly.

For these reasons, dairy products and calcium supplementation may actually have a negative impact on the density of our bones, exactly the opposite of what we were taught to expect. It also counters the simplistic advice to consume calcium supplements alone and/or dairy products that are often offered to many individuals with declining bone density. Magnesium, calcium, zinc, boron, and vitamins D and K, all reported to be deficient in many celiacs, are absorbed from the intestine by the same mechanism, called "active transport." Loading the digestive tract with calcium alone overwhelmingly invites this part of our absorptive capacity with a single mineral, albeit the most common one in the body. This approach is shortsighted and, quite frankly, harmful. It risks causing a deficiency in magnesium and other necessary minerals, which are less abundant and frequently deficient in our diets. Magnesium and phosphorus deficiencies caused by excessive calcium intake may paose a much greater risk of causing bone mineral loss. Further, the risk is largely independent of the traditional suspect in gluten-induced bone damage - malabsorption. The key issue is the balance of relative quantities in which these minerals are available, either in our diets and/or the supplements we consume."

Hope that helps! :)

- Michelle :wub:
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