Please Help Me Understand Celiac!

[AmantHommes]

I have been trying to research this myself, but without much success from my time spent researching. I have recently been tested positive for Celiac by biopsy when doing an endo, my blood test came back as being "unable to test one way or another", which my GI doctor said happens in 1 in so many patients. Anyhow, so apparently, I have Celiac disease (I also have HyPOtyrhoidism) -- my question is -- is what does it do, if you ignore it, or even if you follow a gluten-free diet? I personally get SEVERE bloating, EXTREME pain in stomach, don't want to eat, can't sleep well, very bad heart burn, etc. BUT, does it cause any MAJOR issues, like heart, lungs, kidneys, brain, death, or anything like that, or what happens? If you FOLLOW your diet properly, do you still have outbreaks, problems, etc. or should it completely go back to how it would be without the disease? Just realllllly wish I understood this disease better -- because I keep failing to feel completely right. I have been spending about $1,000 per MONTH at the health food store to stock up on lots of gluten-free meals, foods and snacks -- but still get the nasty feelings sometimes (not always, but sometimes) -- I'm wondering if it is my thyroid pills, or what...? ALSO: even when I am FEELING good (no bloating, no upset stomach, feel hungry as normal, etc., my stool still remains softer than "perfect", and I poop too often -- maybe 2-4 times a day?)... Any and all advice is helpful -- because my doctor seems to not know as much as I would like -- he basically leaves it simply at "celiac disease, follow a diet period"... There seems to be much more to it than that.

[Kamma]

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:

1. Malnutrition

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.

4. Cancer

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.

Sources:

The National Institutes of Health.

[pricklypear1971]

And here's another bit....from what I've pieced together (as well as others), the longer you go without dealing with Celiac or any other ai disease, the more damage happens and the more likely you are to develop other ai diseases. Like Hashis. Or Lupus. Or arthritis. Or Sjogren's.

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.

[Kamma]

Yeah, it's kind of grim if you don't keep eating gluten free.

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.

[AmantHommes]

I've had hypothyroidism for years (about 15-17 years) -- it runs in my family. But I recently read on this board that many thyroid medications have gluten, so I'm worried about mine -- I honestly do not even know the brand of meds I am on for my hypothyroidism, I will definitely find out. I have been consuming many, if not mostly, processed "gluten-free" products, such as boxed meals, microwave bowls, etc. etc. I went to the regular grocery store tonight and bought a few meals of fresh meats, lots of fruits, a few veggies (broccoli and fresh green beans) -- so I'll see how I feel after switching to the "fresher" meals you cook yourself. I do still consume a LOT of cheeses and dairy -- it doesn't seem to bother me and I hope it doesn't, because honestly I'd rather have cheese than chocolate. lol What Kamma said is very interesting -- 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... I found out tonight that coffee and Coffee-Mate liquid flavored coffee creamer are both gluten-free, I hope they truly are, because I was once a Starbucks addict, until this celiac stuff, so I would adore being able to brew coffee and pour in some liquid Caramel White Chocolate creamer!

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

[trents]

Basically, Celiac Disease is an "auto immune" condition, meaning the body attacks its own tissues. In this case, we know that gluten triggers the body's immune system to attack the lining of the small bowel. The lining of the small bowel, when looked at under a microscope, is normally a highly textured surface with lots of little finger-like projections sticking up into the open area of the bowel similar to how stalactites and stalagmites line the walls of an underground cave. This creates a lot of surface area for the absorption of nutrients from the digested food as it passes from the stomach on its way to the large intestine. The immune system's attacks when gluten is ingested by a person with Celiac Disease destroy this texture over time and wear down the finger-like projections, thus greatly reducing the surface area where nutrients are absorbed. Instead, they pass on to the large intestine and are eliminated from the body in stool.

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.

[Adalaide]

I used a lot of the processed foods as I transitioned to gluten free since having what was "normal" for me helped me to cope. The longer I'm gluten free the more of those I cut out of my diet. I find that I feel a whole lot better eating meat, fruits and veggies. I keep my processed foods to a minimum, pasta which I would have a terrible time giving up and cereal and cereal bars. (Cocoa Pebbles, yum!) I eat a fair amount of brown rice and beans. (Which oddly now that I'm gluten free don't lead to extreme biowarfare anymore.) I imagine that after only 3 short months I'm still healing as I don't feel anywhere close to totally better and my pooping habits are still out of whack, although I no longer have emergency trips running for the bathroom and don't ever go so long without going that I feel like I'm dying. I've only lost about 10 pounds over 3 months but the pants I haven't worn in over a year suddenly fit which confirms that my bloating is gone. My fog is lifted enough that I can make it through a day and still remember that morning, at least most of the time.

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.

[celiacandglutenfreehealth]

First, I had thyroid cancer before being diagnosed with celiac, and at that time had a partial and then full thyroidectomy, so I am required to take a daily dose of thyroid medication to replace actually having one. My thyroid medication has no gluten in it, and has never caused a moment of issue (thyroxin).

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.

[Kamma]

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.