Yet Another celiac disease Question

[Alfaromeo]

I stumbled across this website when I was diagnosed with celiac disease 2 months ago and have been very pleased with all the information to be found here. I have been doing much reading about celiac disease since I was diagnosed, as well as about gluten in general. Gluten, it seems, is also very taxing on the bodies of normal people, those who have no gluten intolerance to speak of. Most gluten-containing foods are instantly converted to sugar in our bodies, and consuming healthy amounts of them would force an adrenaline and cortisol release from the adrenal glands to combat this "sugar shock". This places tremendous stress on the adrenals possibly leaving it unable to cope with other, more important stressors. It is also the number one cause of Hypoglycemic episodes, where sugar is stored as fat TOO quickly leading to a sudden drop of blood sugar. As we know, hypoglycemic states have their own set of complications, the most fearful of which are depression and fatigue.

With all this in mind, does anyone know of a healthy, non-celiac person who has tried going gluten-free and seen actual, tangible benefits? And if so, what where their reactions to gluten when it was re-introduced? I ask because my sister has tested negative for ALL celiac disease tests, and had no symptoms of celiac disease, but saw tremendus gains in energy, memory and general wellbeing after going gluten-free. When she re-introduced gluten, she got all sorts of bad reactions that just were not there before.

All of this, coupled with the fact that many doctors/nutritionists advocate that everyone go gluten-free (no exceptions), lead me to suspect the following (and I could be wrong):

Celiac disease is a spectrum disorder, much like Bipolar disorder is a spectrum disorder. One one end of the spectrum, we have the diagnosed celiacs with flattened villi and extremely toxic reactions to even the slightest gluten. On the other end of the spectrum, we have the relatively healthy non-celiacs with seemingly no symptoms to gluten but with slightly over-worked adrenals and less than optimal energy levels.

Any thoughts?

[debmidge]

I am not certain about gluten intolerance being a spectrum disease. I have read Dr. Atkins work and he mentioned his review of carb studies wherein brain function improved on a low carb diet. I don't think the study based itself on whether the eliminated carbs were wheat/oat/rye/barley or other carbs such as corn, potato, sugar....it would be interesting to find out. Some of those studies go back 50 years or so. That's why Atkins was convinced that overloading on carbs (all sources of carbs) were no good for a person.

[Sailing Girl]

"With all this in mind, does anyone know of a healthy, non-celiac person who has tried going gluten-free and seen actual, tangible benefits? And if so, what where their reactions to gluten when it was re-introduced?"

Yes -- me! I was what I considered to be "symptom-free" when I went gluten-free because I was nursing my daughter, who needed to be gluten-free. But I wasn't *really* symptom-free; I had hypoglycemia, occasional canker sores, occasional constipation, a near-constant rash, and dandruff. I also had low-grade depression much of the time.

I never would have connected all these seemingly-unrelated minor annoyances (none of which were severe enough to ask for medical help with) unless I had first gone off gluten and then gone back onto it. They all came back with a vengeance -- and with them came more severe gastro symptoms, migraines, severe fatigue, vertigo, weakness and vision changes. I went gluten-free again, strictly, and they all resolved. Now, a glutening will bring most of them back, but only for a few days, thankfully.

I agree with your spectrum theory, at some level anyway. I don't think gluten is healthy for *anyone,* but obviously only a very small subset wind up hospitalized because of celiac. I believe almost everyone is reacting to gluten in some way, though, even if it's just a case of the over-consumption of grain-based carbs are blocking more optimal nutrition. I think most people would see a health improvement (in some cases, a dramatic improvement) by going strictly gluten-free, even if they don't have anything like "classic" celiac symptoms.

I would dearly love for almost all of my friends and relatives to try a two-week gluten-free trial, as I think (even though they don't think they have related health concerns) they'd see so many issues clear up, just as your sister did.

I'm curious -- you say your sister had "no symptoms of celiac disease" -- do you mean just digestive symptoms? or neuro symptoms? Since gluten intolerance and celiac have dozens of possible related symptoms, she must have had something!

Jane

[Alfaromeo]

"I'm curious -- you say your sister had "no symptoms of celiac disease" -- do you mean just digestive symptoms? or neuro symptoms? Since gluten intolerance and celiac have dozens of possible related symptoms, she must have had something!"

Nothing! No psychiatric/neuro/digstive/allergic/skin-related symptoms. Ofcourse, we could be missing something (even though we did make up a list of 30 or so celiac disease symptoms and then crossed them all out).

As for getting your friends on a 2 week gluten free trial run... ummm, good luck with that

[Takala]

Q1. Do I know anyone healthy who has gone gluten free and seen actual benefits? No, but my husband is by default lower gluten than normal people because he when he eats with me at home he ususally eats the same thing I do if one of us is cooking, typically dinner. Since in the beginning I ate extremely low starch in addition to gluten, this meant he lost some weight. However, since we have different metabolic styles, he also had fatigue problems because in order to do a successful low starch gluten free diet you MUST eat more protein and fat or you run out of energy, my body will do this okay, he had trouble with it.

I suspect I have one sibling with gluten intolerance, I also suspect she will not ever try doing anything about it unless she becomes desperately ill because it is such a major lifestyle change for people like her.(she self medicates heavily with alcohol/other drugs and smokes) This does not, however, mean I therefore extrapolate that my entire birth family is gluten intolerant nor is the rest of the population. I only wish I could blame every annoying behavior on gluten intolerance. Could you imagine?

The typical American diet is very carbohydrate and starch heavy from the large amount of processed, manufactured foods consummed that people do not grow, prep, and cook for themselves or eat raw. And there are not enough people eating real fruit and real vegetables consistantly at each meal. I have in my over 5 decades seen a big change in what is considered a meal in America, portion sizes have increased as well as the availabilty of "junk" food. And grain by products are used as fillers in an extraordinary amount of products where they have no business being, such as processed cheeses, meats, yoghurts, etc. There is no reason a gluten free diet should be SO HARD other than unknown grain products have snuck into so many packaged foods.

I've read the Atkins books and believe, since my experiments upon myself with lower carbs and higher fat and protein, that his theory is sound. But Atkins was talking about carbohydrates sourced from grains, and the bad effect they have on the human body in excess when combined with certain forms of dietary fat. This is not the same as just avoiding the proteins of wheat, rye, and barley.

I know there "might" be some doctors and nutritionists (and other people with gluten intolerance) that advocate everyone go gluten free from doing so much reading on the internet, but I don't agree with them that everyone else worldwide should go gluten free. Anyone can call themselves a nutritionist, and the worst wacky diet "advice" I've come across is from people who either are "dieticians" who are not well versed in celiac or gluten intolerance, or it turns out, "professional nutritionists" who are actually peddling some sort of diet product, diet book, or diet service. You almost have to be gluten intolerant or have celiac disease or assorted grain and other allergies before you can comprehend what it is like, or be intimately involved with one, like being a spouse, and then you may "get it" that telling someone very bad dietary advice is not a kind or compassionate thing to do.

There are so many more of us surviving our childhoods and adulthoods now because of antibiotics and refrigeration compared to a hundred years ago, that we may be seeing what could only be termed an incredible change in the human population's ability to eat its usual food ! It may come to a day in the future when the number of gluten intolerant individuals is so high in the general popuation that a major shift in thinking DOES occur, and wheat eating will be considered an odd thing to do because of the risk. There is also the challenge, given that climate flunctuations are going to make growing certain staples more difficult, of being able to feed the world on the alternative sources of gluten free carbohydrates while at the same time growing fuel crops for biomass type products.

(I need to find the thing where you add a note, I've been not eaten gluten since '03 )

[gottaBGfree]

I don't really know that I can agree with classifying celiac as a spectrum disorder. My understanding, and I am newly diagnosed too so please correct me if I'm wrong, is that any amount of gluten is "posion" to someone with celiac disease. Are there people out there who are diagnosed who can actually tolerate certain amounts of gluten in a safe manner?

I can say from my work in the mental health area that I have worked with parents of autistic children who go gluten free. I know some children with autism who are doing much better as a result of no Gluten. Especially in the area of concentration or attending to tasks. I wonder if children and adults with ADD, ADHD would fair better in that area if they went gluten-free. I can say that I was having a tremendous amount of brain fog and just unable to think at the time I was diagnosed and first came out of the hospital. Thank goodness I am doing so much better now! I would say as far as brain power goes, I'm better able to concentrate and think than I have ever been!!! I will have my first visit with a nutritionist on Monday. I am looking for better ways to snack and how to eat out safely?? I am putting on weight (20lbs since my hospitalization). It's a good thing, but now that my body is able to absorb nutrients, I am actually going to have to watch what I eat!! Did anyone else deal with that and did you feel like you could just not eat enough? What did you do turn things around?

[CMCM]

Before figuring out my celiac disease problem, about 4 years ago I did the Atkins diet for about 8 weeks to drop some pounds. Although it wasn't a way I would eat naturally, I was absolutely amazed at how wonderful I felt on the Atkins diet. Aside from no hunger, all my digestive distress stopped, headaches went away, I had incredible energy, and so on. I now realize it was the absence of all GRAINS including gluten, it was the total absence of sugar & starches which allowed me to feel great again. I ate quite moderate fat (many people erroneously think the Atkins diet is mega fat, but it isn't), so I was eating good protein, eggs, salads, the only dairy was about an ounce of cheddar cheese a day, and most green veggies, and water water water. All the stuff that upset my system was magically gone for 8 weeks, and I felt great.

Eliminating gluten has made an enormous difference in my well being, but in the process of all this I learned that my system simply does NOT handle sugars or starches very well, so I continue to minimize those. I also carefully minimize dairy as I tested casein sensitive as well. I probably should banish dairy entirely, but I like my morning cappuccino.

If you have a strong enough interest in all this, I highly suggest reading a recently published book called Good Calories, Bad Calories, by Gary Taubes. It is hefty reading, but fascinating, and applies to EVERYONE and shows how the food industry AND politics have led us to eat in a way that is bad for us all, leading to the so-called "diseases of western civilization" such as diabetes, cancer, heart disease, etc. This is an eye opening book and should really be read by everyone.

[Sailing Girl]

I heartily second CMCM's recommendation of Gary Taubes' book "Good Calories, Bad Calories" -- it's an excellent (albeit dense) survey of what we know vs. what we think we know but really don't about optimal nutrition and chronic disease.

[Alfaromeo]

I heartily second CMCM's recommendation of Gary Taubes' book "Good Calories, Bad Calories" -- it's an excellent (albeit dense) survey of what we know vs. what we think we know but really don't about optimal nutrition and chronic disease.

While on the subject of nutrition, I would like to comment on the various studies linking food intolerances to schizophrenia, bipolar disorder, and autism. These studies were all suggestive of a link between the two, but most were inconclusive, probably because the remission rate was only about 60% or so. In my humble opinion, these studies were flawed for the following reason:

They eliminated all of the allergens from the diet, but made no attempt to cure the damage that was already done to their systems by years of consuming the above mentioned allergens. Hypothyroidism, hypoadrenalism, and all related pathogens that were the direct result of consuming allergens were not addressed in those studies. In my opinion, treating all those diseases in addition to eliminating allergens from the diet should lead to a success rate closer to 100%.

I myself have seen a remarkable transformation after stopping gluten while taking thyroxine ad hydrocortisone. I am no longer bipolar, cyclothemic, and dysthemic, after only 2 months on the diet and meds. You'd think our psychiatrists would take a greater interest in nutrition given the highly suggestive link in the above mentioned studies, but I guess prerscribing prozac and lithium is far easier and less time-consuming.

[debmidge]

I've read the Atkins books and believe, since my experiments upon myself with lower carbs and higher fat and protein, that his theory is sound. But Atkins was talking about carbohydrates sourced from grains, and the bad effect they have on the human body in excess when combined with certain forms of dietary fat. This is not the same as just avoiding the proteins of wheat, rye, and barley.

Atkins also referrenced neurological studies which stated that brain cell function improved on a low carb diet. So Atkins yes, did state that a diet of a certain about of carbs w/fats made one overweight, but he did mention a study of the effects of low carb diet on brain cells, as that was one of the criticisms the 'low fat diet' proponents charged at him with. And you're right, this study was not about carb proteins in the manner as we are concerned about them in celiac disease. I just found it to have an interesting correlation to neuological function.

Atkins had to prove to his detractors that other than weight loss, there was a benefit to going low carb. His diet advocated that in order to lose weight you had to not eat potatoes, corn, beans, beets, rice, sugar, fruit wheat, oat, barley, rye - any glycemic carbs and that after 2-week Induction Period you could have a low amount of low-carb carbs like salads and soy bread (which I did make from his receipe). Maintenance Period allowed an even higher amount of low glycemic carbs.

Unfortunately I do not have his book in my possession any longer and it was 10 years ago that I did Atkins Diet...but I am not certain if the brain cell study took into account whether it was carbs from grains, fruits, white sugar or all carbs....I don't think it mattered to the study at the time what the source of the carb was (from what I recall). But when I did Atkins I did have more energy and lost over 30 lbs in 3 months. My only concern was did low carb negatively affect my gallbladder?

[Cinnamon]

I was a healthy person with no problems at all, then my two youngest kids needed to go gluten free, so I did too. By day two, I felt fantastic! And I hadn't been having any problems before. A few days later, I was out somewhere and the people I was with were getting hot dogs, so I got one too. Within an hour, my lips were itching and burning. Then I started to itch all over, though I didn't break into a rash. I'm starting to think that gluten is not a good thing for anybody, but you don't realize until you get rid of it and it clears out of your system. I wonder just how many chronic diseases can be attributed to gluten!