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May is National Celiac Awareness Month

May 5, 2010

May is Celiac Awareness Month.


So first, some facts about Celiac Disease also known as coeliac sprue, cœliac disease, c(o)eliac sprue, non-tropical sprue, endemic sprue, gluten enteropathy or gluten-sensitive enteropathy, and gluten intolerance.

  • 1 in 133 Americans have Celiac Disease or about 3 million people. These are very similar to percentages in other countries (barring pure Japanese, Chinese, Hawaiian and some African peoples)
  • Odds are at least one of you readers has undiagnosed Celiac.
  • 98% of people with Celiac disease go undiagnosed OR their symptoms are diagnosed as another issue (I was diagnosed with Fibromyalgia 10 years ago).

Some Symptoms:

First – I want to note that you don’t have to have all of these symptoms. You could have nothing but a sense that you just aren’t feeling right. What did I have? I starred those ones.

  • Funny looking stools (Loose? Hard? Small? Large? Foul smelling? Floating? Clay, Light tan or Gray-colored? Highly rancid? Frothy?)
  • Muscle cramping*
  • Sores in/around mouth
  • Skinny feet (loss of fat padding)
  • Bad gas (ie: hurts, smells awful, constant etc)*
  • Depression*
  • Inability to concentrate*
  • Bone issues
  • Hyperparathyroidism
  • Lactose intolerance
  • Easily bruised
  • Systematic lupus
  • Parasitic infection*
  • Fungus problems (severe athletes feet, candida overgrowth)
  • Nose bleeds*
  • Failure to thrive in babies
  • Vomiting
  • Red urine
  • Hypocalcaemia/ hypomagnesaemia
  • Panic attacks
  • Stunted growth in children
  • Voracious appetite
  • Obesity*
  • Abdominal cramps, gas and bloating
  • Anemia
  • Borborygmi (stomach rumbling)
  • Diarrhea
  • Fatigue or general weakness*
  • Fluid retention
  • Gastrointestinal symptoms
  • Gastrointestinal hemorrhage
  • Hypocalcaemia/ hypomagnesaemia
  • Infertility
  • Iron deficiency anemia*
  • Muscle weakness*
  • Muscle wasting
  • Nausea
  • No obvious physical symptoms (just fatigue, overall not feeling well)
  • Osteoporosis
  • Pallor (unhealthy pale appearance)
  • Peripheral neuropathy (nerve damage usually in extremities)*
  • Vertigo
  • Vitamin deficiency*
  • Vomiting
  • Extreme thinness
  • Bloating – especially in stomach
  • Back Pain*
  • Dehydration
  • Night Blindness*
  • Dry Skin
  • Severe food cravings*
  • Heart Issues (usually odd beats)*

Conditions and Disorders Associated with Celiac Disease:

Dermatitis herpetiformis is an itchy, blistering skin disease that also associated with gluten intolerance. Rashes usually occurs on the elbows, knees and buttocks.  Dermatitis herpetiformis can also cause significant intestinal damage identical to that of celiac disease. However, people who suffer from dermatitis herpetiformis may also be entirely free of noticeable digestive symptoms. Treatment with a gluten-free diet, in addition to medication to control the rash, usually brings about significant improvement.

Getting Tested
There are some simple tests that aren’t absolutely 100% , but it is WAY TOO EASY for a doctor to give you one, barely accurate test, tell you it’s negative (and be absolutely wrong) and damn you. Your chances of cancer are aprox 50% higher if you are eating gluten and your body is intolerant of it. Did you read that?? You basically have a 50/50 chance of getting cancer if you are an undiagnosed Celiac! Does cancer run in your family? Maybe it’s not Cancer – it’s Celiac!

If you are going to get tested, check out here first:
http://digestive.niddk.nih.gov/ddiseases/pubs/celiactesting/index.htm

The other thing is, if you hardly eat gluten containing food as it is, and you get tested, your results will be wrong. You need to be eating the equivalent of 2/3 pieces of bread for about 3 months before you get tested. (it’s the reason my 16yo hasn’t been tested, she felt so GOOD when she quit eating gluten she and her Doctar are not willing to loose 3 months of her life just to have the test diagnosis and he’s willing to call it ‘presumed Celiac’ instead)

If you think that you might be gluten intolerant, and your doctor is reluctant to test you. First, my mom, who has been a nurse almost 40 years says that when she, and most doctors were in school, they were taught that Celiac was very rare. More than that say Multiple Sclerosis. So quite a few doctors, unless they keep up on their research, think that Celiac is a ‘fad disease” and are reluctant to test.
Insist. Celiac is also a disease for those who are more well off. Turns out doctors are more willing to test you if you are in a higher Socio-economic bracket!

If you can’t get tested. Then go gluten free anyways. Give it 2 weeks at the minimum. If you feel better. Awesome. I suggest you write in a journal. Chronicle what your body ACTUALLY feels like before and after. After 2 months. Eat gluten. If you get immediately sick, there’s your answer. Or you could be like me, sick comes later. First I get extremely irritable and make everyone around me miserable for days. It’s pretty hard for me to see what I’m doing at first. Because hey, I’m pissed, and I think I have a right to be. But it’s the gluten. I’m normal off of it, on it, I’m a miserable bitch. Because next comes the body pain, the neuropathy, and then the fatigue, flu like symptoms and just general malaise. For about a week. Then I’m more susceptible to illness for about another month. Yes, it takes that long to recover. Some people are so sensitive after quitting gluten it takes them almost 6 months to recover after being glutened. You can imagine those people don’t let gluten in their house.

Also, even TWO YEARS ago, it was difficult to find gluten-free food. Now, most companies (barring buttheads like Cambells) make their food with a gluten-free label, Heinz, Progesso, Lays, General Mills and Betty Crocker just to name a few. Nowadays you don’t have to be an extraordinary baker to get good tasting food. Yes. It’s more expensive. But personally, this is good. It makes it so I rely less on ready made products like bread and donuts to eat and more on healthier things that are fast cooking (like eggs mmm and cheese). General Mills is even coming out with a ‘hamburger helper’ and ‘Bisquik’ this Summer!
So don’t use the difficulty of eating as an excuse to not go gluten-free. please.

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2 Comments leave one →
  1. September 22, 2010 3:48 am

    Hi,

    I just found your blog and thought it was great btw but now I think I may actually have this. All my unexplained problems the doctors just seem to dismiss are listed here. I get this low unexplained backache accompanied with other symptoms and have been looking for a cure for so long. I hope to see a doctor soon!

    It’ll suck though as I do really love lots of things with wheat in…

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