I've Observed Some Things.....

[Guest Kathy Ann]

I've noticed that many of us on this board seem to be having trouble getting gluten free enough, long enough to actually feel better. There seems to be a lot of relapses and going back and forth between OK and terrible, sometimes even for months or years. I've even read from some of you veterans that you are only now suspecting allergies to things you've been eating for years. These relapses are apparently due to accidental gluten exposure, unknown other food allergies, other diseases secondary to the gluten issues and maybe even some detoxifying of stored gluten, if that's how it works.

I'm wondering if the problem isn't that many of us have failed to begin at the beginning. We are just jumping in anywhere and hoping for success. It's not our fault. It's because our health providers are failing to give us a sensible, logical, incremental protocol for dealing with such a diagnosis, so we can fully recover as quickly as possible. Obviously some of you have been very successful. But others still can't seem to get truly well. To tell a person to simply quit eating gluten is way too simplistic. Until you try it, you don't have any idea what that means. It takes education and training to pull it off.

I've noticed that A LOT of the problems discussed on the board have to do with commercially prepared foods and restaurants. Bottles, cans, boxes and packages of foods are painstakingly developed by commercial companies to tap our market but also to make our lives more fun. But the terrible suffering caused by mistakes, misunderstandings, constantly changing formulas, unknown allergies and just plain carelessness is a huge price to pay, it would seem to me. Maybe it's not practical to expect everyone to make everything from scratch. But maybe that's what some of us need to do.

What's bothering me is that if it truly takes weeks or months to recover from a single glutening and if the symptoms can often be delayed to the point where I'm not sure what did it, it can seem like a hopeless, endless circle. But if I can use some of this amazing testing technology we now have available to provide some of the puzzle pieces at the start, and if I can limit myself for the first year at least, to a clean simple diet to avoid all the accidental glutening or poisoning from other allergy foods, then I think I could expect to see a lot more dramatic long term results across the board.

[Guest nini]

Very good observations... if it were a perfect world... ah, but it's not and it is what it is...

we do the best we can, and you are right, if we limited risks and could accurately determine ALL our other food intolerances and other autoimmune disorders or related health issues up front than it might be easier to come up with a better treatment plan. We can hope for better education in the medical community about follow up care, we can help to educate them ourselves, but ultimately, people are gonna do what they want to anyway.

Anyhoo... I can't think too clearly right now... not able to sleep. We have a new kitty in the family, and our two other kitties are upset right now...and the dog wants to play with the new kitty, and the new kitty wants to go outside (NOT HAPPENING!)

[lindalee]

Hi Kathy Anne - I know what you are talking about! I am on a healing diet-no grains, corn,soy, nightshades, dairy-except yogurt, cream cheese and yogurt, good water. Maybe I will do a test.

What are you eating? I do alot of soups, salads, smoothies....veggies fruits...I was diagnosed as a baby but thought I outgrew celiac. Needless to say, I have been on this site alot.

Hi Nini - How fun a new kitty. Hope you get some sleep

[Guest Kathy Ann]

Lindalee, from everything I've read and know about human physiology, people do not outgrow celiac. IF your initial diagnosis was correct, you most assuredly have celiac. It's just been hiding for awhile. It apparently does that sometimes. Anything to keep us on our toes!

If you intend to do a test, I would encourage you to do it pretty soon - before you've been off gluten very long. I made that mistake. Of course, the enterolab test could still be accurate they say for even a year or more after gluten removal.

Are you casein intolerant like me, or just dairy in general. I'm actually allergic (as confirmed by tests) to so many areas of dairy that I just decided to eliminate it altogether. That was way harder emotionally for me than the gluten. I LOVE dairy products. I understand the addition of yogurt since some authorities think it's OK even with dairy allergies. But what about the cream cheese? Were you told that was OK or did you decide through your own elimination experiments?

I don't have any firm diet yet. (no pun intended) The reason I'm spending so much time thinking and writing about all of this is because I'm one who still feels pretty badly. I'm obviously allergic to A LOT of foods and have been going around in circles. Whenever I try to branch out, it always backfires on me. That's why for someone like me, the stricter diet is probably the best idea, maybe the only idea. I've tried some of the wonderful bean flour mixes recently and have had an apparent reaction. So now I'm suspecting legumes. Rice still seems to sit OK. But again, how can we really know what did it if symptoms are frequently delayed and long lasting? It is still a mystery to me how to deal effectively with that.

[tarnalberry]

any wonder I suggest staying away from prepackaged stuff?

[spunky]

I've had pretty good results in almost nine months...about 4 days away from beginning my ninth month gluten free. I'm 53, and I think, looking back at my life, I've had hints of a gluten problem most of my life, but really noticeable and bad intestinal things for the past decade or longer. I never consulted a doctor about any of this; it's just all my own thinking.

But I've mostly avoided processed foods...not entirely, but mostly. For almost 10 years, I wasn't avoiding gluten, but had read a lot of writings by John McDougall, an MD who treats many diseases, heart disease, arthritis, autoimmune disorders, etc., with good results, on a low-fat vegan diet. This was a double edged sword for me. I think my health may have improved on the low-fat, vegan diet, but I do believe my symptoms kind of blew up for me because of all the whole grains I started eating. I think this diet may have accelerated any gluten issues I was having, but at the same time, I think that living mostly on whole, unprocessed plant foods was buffering a lot of the damage...as I said, these are just my own thoughts.

I'm now gluten-free, dairy-free, oil-free (another teaching of John McDougall...oils promote inflammatory responses, whether it's your heart, eyes, bones and joints, autoimmune things, etc.) and feeling better all the time...still waiting for consistently NORMAL feeling days. But I'm worlds better than what I was a year ago. Since going gluten free and starting to do better, I've probably given in more to packaged foods than I did for the past 10 years...I've become a real sucker for the occasional gluten-free box of cookies...I only buy the ones without animal or dairy ingredients, but they are usually high in oil. Also, we have eaten some fish lately...I don't know why, but when I started feeling better and it was consistent enough to know I was finally getting better, I just wanted fish, and thought, I'm tired of all the sacrifices. So we have eaten some wild salmon, shrimp, and wild cod in the past month or so.

I agree that it's a viscious circle of accidental glutenings, hypersensitivy while getting well, etc., and it's extremely difficult to know what sorts of problems a person has. I feel that avoiding casein and other dairy constituents, and at least avoiding polyunsaturated oils whenver possible, might help some people avoid such bad inflammatory responses...just my opinion.

Bottom line...this is TOUGH! I think the most paranoid eventually do find their health again!

[lindalee]

Lindalee, from everything I've read and know about human physiology, people do not outgrow celiac. IF your initial diagnosis was correct, you most assuredly have celiac. It's just been hiding for awhile. It apparently does that sometimes. Anything to keep us on our toes!

If you intend to do a test, I would encourage you to do it pretty soon - before you've been off gluten very long. I made that mistake. Of course, the enterolab test could still be accurate they say for even a year or more after gluten removal.

Are you casein intolerant like me, or just dairy in general. I'm actually allergic (as confirmed by tests) to so many areas of dairy that I just decided to eliminate it altogether. That was way harder emotionally for me than the gluten. I LOVE dairy products. I understand the addition of yogurt since some authorities think it's OK even with dairy allergies. But what about the cream cheese? Were you told that was OK or did you decide through your own elimination experiments?

I don't have any firm diet yet. (no pun intended) The reason I'm spending so much time thinking and writing about all of this is because I'm one who still feels pretty badly. I'm obviously allergic to A LOT of foods and have been going around in circles. Whenever I try to branch out, it always backfires on me. That's why for someone like me, the stricter diet is probably the best idea, maybe the only idea. I've tried some of the wonderful bean flour mixes recently and have had an apparent reaction. So now I'm suspecting legumes. Rice still seems to sit OK. But again, how can we really know what did it if symptoms are frequently delayed and long lasting? It is still a mystery to me how to deal effectively with that.

Kathy Ann - I was diagnosed as a baby at John Hopkins after being in and out of the hospital. They told Moma that she should keep me on the diet 2 years. I think that is what they thought back then. I do not have any records. This year I realized I had Celiac after being ill after the death of my son. I believe the trama brought this disease out. I have been gluten-free since Feb. with accidents along the way as I began learning that gluten is in so much.

There is a program I watch called "Your Health". It's on the Christian Station. I ordered their book,"Foundations for Healing" and follow the healing diet. The dairy does allow cream cheese.

I have not been to the doctor yet because I am not sure who I want to go to. I do want to go and get a check up and some tests done - but I am really not sure what to ask for. I have been discouraged from some of the doctors I went to 3 years ago. I told them I would not take their hormones and they actually made me feel worse because I told them I didn't think they were good for me. Now, of course, info is out on how damaging they are.

I am self employed so I wasn't going to red flag the celiac. Some on this board have been canceled from their insurance because of celiac which is crazy because we just quit eating gluten.

Rice is something I only eat occasionally - like going to PF Changs- Since it is a grain and grains are eliminated on this diet. I am also in touch with the SCD but follow the healing diet now.

The transition diet is next - once things are right - then they suggest going to that one.

[CarlaB]

I say I have to agree. I eat meat, eggs and veggies. The only processed foods I eat are gluten-free bread and pasta. I've been doing this for a little over a month now and am finally getting some stregth back.

[Guest Kathy Ann]

Lindalee,

Wow! John's Hopkins. It doesn't get any better than that! I've had trouble knowing who to go to medically as well. My regular gp, whom I dearly love, doesn't seem to be up to speed on this at all. So I've just tactfully steered clear of him lately. I'm consulting with a naturopath who is a wonderful down to earth guy. He believes in allergies being at the core of a lot of people's health problems, but he ALSO isn't up to date specifically on celiac. So I sometimes feel like I'm teaching him. He is primarily helping me with my hyperactive adrenals, which cause me the most discomfort on a daily basis. But I have no one but my own studying and this message board to guide me through the "celiac tunnel."

I'm interested in the diet from the christian station that you mentioned. Is it specifically for celiac, or just a general health diet?

I don't have an official diagnosis for my celiac either. That's probably best. My husband is a cancer survivor and we are already hostages of our insurance company. I intend to stay under the radar if at all possible myself.

When I crashed 8 years ago, everyone assumed it was hormones at 50 years old. But I always amazingly tested pretty OK hormonally, even at my worst. It's been a total mystery until now what was causing me to be so terribly sick. I've never taken the synthetic hormones either.

I've already begun my strict diet. Besides the dairy, soy, eggs and gluten, I'm going to eliminate ALL grains now and see what happens. If I knew I would actually feel better for 2 days in a row, I think I could just about follow any diet! Well....almost any diet.

Spunky,

I was a vegan for several years in my attempt to get well. I obviously hurt myself with all the grain. I just didn't know any better. Do you use any fats to avoid fatty acid problems? I haven't eaten hydrogenated or commercial liquid oils either for many, many years. But I'm always sure to get my healthy fats through extra virgin coconut oil, extra virgin olive oil and the nuts I can tolerate. I can't even eat eggs or dairy now, so I NEED meat/fish badly to get enough protein. At least that's me. I think your adding fish was a good idea. Unfortunately, we now have to watch out for the mercury. It's never just easy, is it?!

[lindalee]

Lindalee,

Wow! John's Hopkins. It doesn't get any better than that! I've had trouble knowing who to go to medically as well. My regular gp, whom I dearly love, doesn't seem to be up to speed on this at all. So I've just tactfully steered clear of him lately. I'm consulting with a naturopath who is a wonderful down to earth guy. He believes in allergies being at the core of a lot of people's health problems, but he ALSO isn't up to date specifically on celiac. So I sometimes feel like I'm teaching him. He is primarily helping me with my hyperactive adrenals, which cause me the most discomfort on a daily basis. But I have no one but my own studying and this message board to guide me through the "celiac tunnel."

I'm interested in the diet from the christian station that you mentioned. Is it specifically for celiac, or just a general health diet?

I don't have an official diagnosis for my celiac either. That's probably best. My husband is a cancer survivor and we are already hostages of our insurance company. I intend to stay under the radar if at all possible myself.

When I crashed 8 years ago, everyone assumed it was hormones at 50 years old. But I always amazingly tested pretty OK hormonally, even at my worst. It's been a total mystery until now what was causing me to be so terribly sick. I've never taken the synthetic hormones either.

I've already begun my strict diet. Besides the dairy, soy, eggs and gluten, I'm going to eliminate ALL grains now and see what happens. If I knew I would actually feel better for 2 days in a row, I think I could just about follow any diet! Well....almost any diet.

Kathy Ann, Here is the web site: www.bioinnovations.net or www.alohanoni.com

The Program comes on 3 times a day on Family Net Channel. You might be able to catch the noon show.

The book covers everything from cancer to ibs to immune etc, etc. It is well worth the money.

Corn is something that I also eliminate. Let me know if you need any more info.

I take his noni and others.

I love the program. They cover different health topics each day. I have learned so much from it. Especially the yeast issues. He does mention celiac occasionally on the show as well as other problems that we face with this disease. Take care.

[spunky]

About the fatty acids and oils, etc. From different books, lectures, etc., of Dr. John McDougall, I learned that the reason most people eating the Western diet are too high in omega 6 fatty acids and too low in omega 3 fatty acids is that most prepared food, especially in the U.S., but probably all Western diets, is made with polyunsaturated vegetable oils from soy, corn, sunflower, etc. This leads to the imbalance, which can cause macular degeneration in our eyes as we age, or can influence cancers to grow, or add to any inflammation in the body. According to McDougall, if we go out of our way to avoid eating things with those polyunsaturated oils added, our omega 3 fatty acids automatically come up to where they should be as long as we are eating plenty of green, especially leafy green veggies.

So, according to him, adding fish oils for the omega 3 fatty acids is unnecessary and carries a cancer risk too. Adding flax oil would do the same, but eating the whole flax seed or walnuts would be okay, since you are getting everything else in the seeds/nuts along with the fatty acids, instead of just the oil alone. I have not been able to ever eat flax seeds without getting really bad intestinal symptoms...I'm thinking after a few more months gluten free I might try that again. I can eat walnuts, as long as i don't go overboard with them.

I'm not sure why I started including some fish...maybe just as an extra "gift" to myself because I feel I've been through a long haul of scary stuff, hopelessness, and thinking I wouldn't ever feel good again. Now I feel I'm climbing out of this, and I've been rewarding myself with gluten-free, storebought cookies (they're loaded with oils of all kinds!) and wild fish. I don't know if I'll do this forever, but for now I'm just really into doing that.

Saturated fats, like coconut or palm, as far as stuff I've read, seem to be innocent bystanders at the most, as far as inflammation, macular degeneration, cancers, etc. go. How much they affect the heart is a debatable thing, though. I do use coconut oil smeared onto cast-iron cookware, but wipe off as much excess as possible before cooking. I know there are lots of varying opinions out there on saturated fats, and just how much damage they might cause. I feel more comfortable going easy on them, myself.

I agree the vegan diet can be very damaging from the heavy reliance on grains, especially glutinous grains. I seem to have no problem as of yet with other grains, but apparently many people do. But I ate glutinous grains many times a day for several years, in huge amounts, and ended up where I am now!!!!

[Guest Kathy Ann]

If there's one thing I'm learning lately, it's that we are ALL biochemical individuals (Roger J. Williams). Gluten and other food intolerances aside, I think there is a WIDE variance in optimum diets amongst us humans. Some people seem to do perfectly on nearly all vegetation or heavy grains, while others thrive on heavy animal products. All the more reason to study and understand YOURSELF.

[eKatherine]

If there's one thing I'm learning lately, it's that we are ALL biochemical individuals (Roger J. Williams). Gluten and other food intolerances aside, I think there is a WIDE variance in optimum diets amongst us humans. Some people seem to do perfectly on nearly all vegetation or heavy grains, while others thrive on heavy animal products. All the more reason to study and understand YOURSELF.

I know I have always eaten a lot of meat, fish, and dairy. If I cut back for a while and went semi-vegetarian, after a couple of weeks I would get irresistible cravings for meat and fish. This may have something to do with some sort of malabsorption, which may have been what showed up in the past as chronically low serum albumin levels.

It is also true that if I don't eat enough fat, I will go bonkers until I do.

[Guest Kathy Ann]

I know I have always eaten a lot of meat, fish, and dairy. If I cut back for a while and went semi-vegetarian, after a couple of weeks I would get irresistible cravings for meat and fish. This may have something to do with some sort of malabsorption, which may have been what showed up in the past as chronically low serum albumin levels.

It is also true that if I don't eat enough fat, I will go bonkers until I do.

Not including the cravings we have because some things just taste INCREDIBLE, some researchers think that the body will instinctively crave what is missing. Chocolate for its magnesium is the most common theory. Makes sense. But it might be hard to weed through all the cravings just because some things taste INCREDIBLE!