Please Help Me Understand Celiac!
Posted 29 March 2012 - 03:50 PM
Posted 29 March 2012 - 06:54 PM
my question is -- is what does it do, if you ignore it, or even if you follow a gluten-free diet?
Here's what eating gluten can do to you in the long term if you are celiac:
Even when patients are eating lots of healthy foods, they can become malnourished because the nutrients in the food are not being absorbed. Instead, the vitamins and nutrients are excreted in the stool. Malnutrition in untreated celiacs can cause weight loss, anemia, and vitamin deficiencies that may result in fatigue, stunted growth, neurologicial problems, and low bone density.
2. Decreased Calcium Levels and Osteoporosis
Calcium and vitamin D are lost in the stool instead of being absorbed into the body, leading to rickets in children, a type of kidney stone called an oxalate stone, as well as osteomalacia (softening of the bones), osteopenia, and osteoporosis. Interestingly, bone diseases can occur in people with milder forms of celiac disease who do not appear to have malabsorption. Bone density can actually improve once the gluten-free diet is started.
3. Lactose Intolerance
The enzyme lactase, which helps us digest the lactose in dairy products, is produced in the cells that line the surface of the villi in the small intestine. When the villi shrink and flatten in celiac patients who are eating gluten, lactase can no longer be produced and the patient develops lactose intolerance. Many celiac patients on the gluten-free diet find that once their intestines have healed, lactase production resumes, and they are able to tolerate lactose-containing products.
According to most studies, long-standing untreated celiac disease leads to an increased risk of gastrointestinal cancer, such as lymphoma. Even with this increased risk, however, these cancers are rare in celiac patients. Some evidence suggests that in celiac patients who follow a strict gluten-free diet, the risk is no greater than in any other healthy person.
5. Neurological and Psychiatric Complications
Celiac disease has also been associated with depression, schizophrenia, anxiety, neuropathy, balance disorders, seizures, and severe headaches.
6. Miscarriage and Congenital Malformation of an Unborn Baby
Pregnant women who don't realize they have celiac disease (or who know they have it but don't follow a gluten-free diet) have nutrient absorption problems that can lead to miscarriage or congenital malformations, such as neural tube defects.
7. Short Stature
In children, undiagnosed celiac disease can lead to short stature. During childhood, it's crucial that children get the right nutrition to help them grow and develop. If they have unrecognized celiac disease and are eating gluten, the damage to their intestines will prevent nutrients in their food from being absorbed. Fortunately, if celiac disease is diagnosed in time, a gluten-free diet can sometimes help a child catch-up to a normal height.
The National Institutes of Health.
Posted 29 March 2012 - 07:07 PM
You may have another food intolerance - temporary or permanent. Many recovering Celiacs have a problem with casein/lactose (milk). Others have soy, corn, egg issues. Sometimes you just need digestive enzymes and probiotics to help your go system adjust.
Also, most of your shopping can be done at the regular grocery store- fruits, veggies, meats, legumes, herbs, spices. I visit the specialty stores for some items like flours, pastas, breads.
Is gluten-free worth it? Yes. Your health will probably continue to decline on gluten. Don't ever think it can't get worse...it can and does.
The first 6 months are a wild ride. Your body will go through many changes. My bm's took 6 months to find a new "normal", so don't worry unless you notice a pattern of extremes - extreme D, C.
Do you know if your hypothyroidism is caused by Hashimotos? Hashis patients have swings between hypo/hyper. It's normal. You may be experiencing this. Also, if you are just starting supplamentation it may take a while to get the dosage right. Finally, you may need a different type of med. I'd give it a while and see if it levels out.
Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND.
Responsive to iodine withdrawal for DH (see quote, above).
Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
Posted 29 March 2012 - 07:13 PM
I second what prickly said: eat the true gluten free food of vegetables, fruit, meat and seeds. It's cheaper and much more nutritious. Also, processed foods that are labeled 'gluten free' are not gluten free. They are allowed 20 ppm gluten in their products. Recent testing of random products claiming gluten free have shown that they can and do exceed this 20 ppm up to 200 ppm.
These levels are for the U.S. I live in Canada and up until 2010, Health Canada was still developing their levels and requirements. I'm still looking for what they have come up with.
Posted 29 March 2012 - 07:51 PM
Any other advice, suggestions, meals, foods, recipes, etc. would be highly appreciated. You all have been very very helpful!!!
ALSO: What is best to eat for fiber and legumes & seeds?
Can't wait for the "normal" bm's... I guess that will come once my body is completely content with what I am putting into it. lol
Posted 29 March 2012 - 09:56 PM
Theoretically, once you eliminate gluten from the diet the lining (i.e, "mucosa") of the small bowel heals and symptoms disappear. In real life this doesn't always happen as neatly and completely as we would like. There can be and often are several reasons for this:
1. Age. Celiac disease research has shown that going gluten free brings healing much more reliably in young people. After about age 35 the rebound of the SB mucosa doesn't happen as well. Age also has an adverse effect on healing in many or most diseases so this is not surprising.
2. Permanent damage to other physiological systems because of the length of time it takes to diagnose Celiac disease. It takes on the average 10+ years to diagnose celiac disease. Thus, nutrient deficiencies and other spinoffs of celiac disease damage organs and nerves over time and this may not be entirely reversible. The best example of this is bone density loss.
3. The great challenge of eliminating gluten from the diet. Most of us, despite all our efforts, still get "glutened" now and then. It is said that it only takes an amount of gluten the size of a quarter of a grain of rice to precipitate an auto immune Celiac attack in some people. These attacks can last for days or weeks. Gluten is not only in foods but in personal hygiene products and medicines, things that go into our mouths that you would never suspect as containing wheat products.
4. And then there is something called "refractory sprue" or Celiac disease that does not go into remission when gluten is eliminated. It does not respond to the usual anecdote of going gluten free. A certain percentage of Celiacs have this form. Its a mystery and doctors don't know why.
Having said all that, it's easy to get discouraged and just give up on going gluten free. But its really the only choice you have if you're a Celiac. Even if it only brings partial improvement we all have an obligation to do what we can do. If we will do that perhaps we can head off some of the problems that would accrue if we just ignore it. And, there is a lot of research being done on cures for celiac disease these days. Sooner or later someone will come up with something that's pretty effective I think.
Hope this helps.
Posted 30 March 2012 - 12:00 AM
As for the worst ill effect? I have just started the process of dental work I need. I was diagnosed with scurvy some 5 or 6 years ago and my teeth are in such bad shape I need something like 20 thousand dollars worth of work done. (Which is steep but I need 4 or maybe even 5 implants to replace teeth that I can't get bridges for.)
So anyway, my point is that it gets better but it takes time. Many here have shared stories of years and years of healing, which can be discouraging at first. On the other hand, once you are more successful with your diet you should notice at least some little things pretty quickly, and that for me is what keeps me on the wagon on my worst days of temptation. I also tell myself that after watching a grandmother die of intestinal cancer that it is certainly not a way I want to die. At just under 5 feet tall she weighed under 50 pounds when she died, no one should ever suffer that and if we can all do something to prevent it we should.
"You don't look sick or anything"
"Well you don't look stupid, looks can be deceiving."
Celiac DX Dec 2012
CRPS DX March 2014
Posted 30 March 2012 - 07:47 AM
Second, with respect to legumes, etc. for fibre - most legumes are naturally gluten free. Chick peas, black beans, kidney beans - all excellent - so enjoy those chili recipes, etc. Quinoa is a wonder food, so good for you and naturally gluten-free, not to mention super-fast to cook after those long work days.
Good luck in adjusting - it definitely takes time, but you will feel very good once you do.
Posted 30 March 2012 - 09:42 AM
does anyone know how celiacs consuming gluten has affects on their brain/neuro system? I mean, it is weird how it can affect your mood, memory, mind, etc etc...
ALSO: What is best to eat for fiber and legumes & seeds?
Celiac presents primarily neurological for me. For the past three years I have had constant vertigo, exhaustion, and ataxia that progressed. Balance issues and looking like I was doing what they call the 'drunken sailor walk'. My brain was fogged out and I started to slur my speech. I had head titubations (head bobbing) and seizures out in public. The ataxia was / is torso rotations. (My upper body would start rotating/swaying in uncontrollable circles). I also have hyperacuity so sounds are extremely loud and distressful.
Others present with the neuropathy which affects their peripheral nerves.
For fibre, prunes are great! Also apples and pears have the most fibre of all the fruits. They are awesome to eat. Chick peas are great and home made split pea soup is a cinch to make. Just google a recipe. You might want to check out the Raw Food Diet or Paleolithic Diet. I've been doing the Paleo diet for two months now and am very happy with the results - I feel great and it's simple to do. Also...you might want to try quinoa.
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