TX Lyme Mom
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posted
Wow! This celiac/leaky-gut topic is becoming mind-boggling for me.
I'm starting to feel overwhelmed already by trying to knit all of this valuable celiac info together with all the other promising new concepts which I've been researching and learning about recently, especially Ritchie Shoemaker's ideas about insulin control and also about biotoxins in his 4 books.
I'm equally fascinated with Dr. Shoe's "No/Low-Amylose" dietary concept as it relates to immunology through insulin control -- especially since there is so much interest nowadays in eating foods with a low glycemic index. His No/Low Amylose diet is somewhat similar to a celiac diet because it cuts out so many grains.
Maintaining steady blood sugar is extremely important for insulin control, and insulin has an enormous impact on immunity -- as explained in his last two books (his diet book and his "Mold Warriors" book).
Furthermore, Dr. Shoe's "Mold Warriors" book explains how biotoxins, which are fat-soluble toxins, interfere with both immunity and with our endocrine system, as well as with the nervous system -- since all of these body systems are high in fatty acids, especially those steroidal (and secosteroidal) hormones which are derived from sterols/cholesterol.
Fat-soluble toxins will dissolve into other fatty tissues, you know, so fat-soluble toxins represent a major source of our modern 20th and 21st century diseases!
Thus, I'm beginning to suspect that these fat-soluble toxins might be the trigger which has provoked such a rapid increase in Celiac disease within the last few decades -- not only just the fat-soluble lipoprotein biotoxin produced by Bb of course, but also all of the many other fat-soluble toxins which we are exposed to on a daily basis.
Special Note to Jill E.: Yes, I know they've developed some digestive food enzymes for autistic children who are gluten- and casein- intolerant, but these enzymes are too expensive for adults because adults would have to take so many of them and they are very costly.
If anyone is up for it, I encourage you to explore Dr. Shoemaker's ideas. There's a lot of good free info at his two websites, but the best stuff is inside the covers of his books. If I can ever get everything all assimilated, I'll be a happy camper.
Regarding diverticulitis/diverticulosis, I glanced at those links which Northstar posted and I observed that two of them suggested the use of Citrucel or Metamucil products. I would like to comment that I've learned from several sources that many sensitive folks tolerate Citrucel much more easily than they do Metamucil, so you might want to keep that in mind when shopping. The psyllium in Metamucil can cause adverse reactions in sensitive individuals.
There is also the question of whether the sugar-free fiber products are safe or not because of the artificial sweeteners in them. Buyer beware.
Do your homework first on the pros and cons of artificial sweeteners before choosing which kind of fiber product to buy because the small amount of real sugar in these products might be less harmful for us than the artificial sweeteners are -- in spite of what Dr. Shoe says about sugar being bad for insulin control. (I part paths with him here because I don't trust artificial sweeteners very much at all.)
If all these far-ranging conepts of mine aren't too confusing already, I feel urged to mention that our daughter has lost all of her food intolerances and gained some needed weight now after having been on the Marshall Protocol (MP) for two years.
My main reason for continuing my personal quest for new ideas is that I am keenly aware that there have been a few patients who have not had the same amazing success with the MP that she has enjoyed, so I'm trying to figure out why not. Thus, I'm continuing my own search for better answers for their sakes. Afterall, I've been a support group leader for too many years now to be able to give up this passion in my life now just because my own daughter has found health and healing.
(If anyone is curious about the MP program, please feel free to contact me privately. I don't want to side-track this important celiac topic with a discussion of the MP, other than just to make brief mention of it -- because the MP really does seem to have healed all our daughter's "leaky gut" issues very nicely after so many long years of terrible digestive miseries.)
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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Elley & Northstar, I forgot to ask about the goat yogurt. Is it available commercially, or do you make your own? (I know how to make yogurt, but I'm lazy, so that's why I'm asking.) TIA.
Posts: 4563 | From TX | Registered: Sep 2002
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northstar
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TLM: I buy a big container of plain goat yogurt....again, at Whole Foods. Then I add flavorings,stevia, and fruits.
I have a book by Bette Hagman, "The Gluten-Free Gourmet". It has good recipes using alternative flours for soup & gravy thickeners, plus the muffin/cookie recipes, plus using tapioca as a dessert with fruit (and as a thickener).
There is much on the internet, including chat groups, with recipes, etc.
But I am too lazy to get fancy, and just cook and eat light, no muffins, pasta, etc.
The most difficult challenge is combining the problems of gluten free with no-cow/dairy ( tried almond milk, and my liver sang the blues for half a day), avoiding sugar, and the need to regulate or lower carbs, and for others, the diverticulosis challenge.
I tried no-carb, lost way too much weight, and was so weak and miserable, and then read some opposing viewpoints.
One view is that no carb is not healthy, and that we need to re-think it, to lower carbs, instead of eliminating carbs. And I think I read somewhere that this low carb demand is more important only if you are overweight and eating an unbalanced diet. And I did not fit in that category.
For example, the big news is the overweight American with snacks of fast food, chips, pastries, deep fried Krispy Kreme's, and meals that are 50-75% potatoes, etc. Those diets need to change. Maybe that is the reference population, when they are talking the yeast diet?
It is like the salt story. The gov/t said we use too much salt, etc. so I cut salt consumption to almost negligible. But that was table salt.
Then others here talked about the ocean salts, & Real Salt, and the importance of minerals. So I use more salt now too (RealSalt), and make sure it is at least 2-3 grams.
I try to control, but not eliminate carbs. I use the dark rices as my central staple, which will be 1/4 of meal. I use carbs for 2 of 3 meals a day, with 2 small carb snacks approximately, during the day. Small portions, about 2/3 c., at meals.
I do not get hung up on it too much by measuring, just regulate it. If I judge it was too much, then the next day, I will cut back. Pretty simple.
My grocery bill is probably a little more, but that is because of the higher price of organic meats and vegetables (most of veggies are frozen).
But I have eliminated candies, chips, dips, cookies, yummy pastries, desserts, ice creams, fancy drinks & juices, all alcoholic beverages, so there is some trade off in costs.
(somehow I lymely digressed from gluten/dairy free to carb intake.....) Northstar
p.s. Lymetoo, I also read on some candida websites that the yeast in bread is not a concern in Candida problems. It is truly confusing.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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TX Lyme Mom
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quote:Originally posted by Jill E.: Some of his current research is looking at particular enzymes and other ways to tighten the junctions. (I'm doing this from memory so forgive me if I'm not explaining it correctly, but there is some very exciting research going on in Celiac Disease).
Hey Jill, I've found some info about a new enzyme therapy for Celiac. I'm not sure if this is the same thing that you heard about or not, but take a look. It's very new, as of just the last couple of months, so it might be something else different from the therapy that you had in mind.
http://www.chembiol.com/ -- Scroll down to read the Cover Caption at the bottom of the page. (This link may become outdated soon. If so, then look for the related articles by Bethune, et al, and by Siegel, et al, in the June, 2006 issue of this same journal at this same link.)
I'm editing now to add the link to the entire article, which is available on the internet as a PDF document. (I'm posting the link below to only one of these two related articles, but the other article is available also if anyone cares to visit to the journal website, at the link above.)
"The most difficult challenge is combining the problems of gluten free with no-cow/dairy ( tried almond milk, and my liver sang the blues for half a day), avoiding sugar, and the need to regulate or lower carbs, and for others, the diverticulosis challenge."
Yep, that's where I am right now. Between a rock and hard place. The most frustrating part is the difficulty I'm going to have trying to safely eat out.
Thanks, TXLM, I'm reading what you've been writing. I appreciate all your interest in this. I really do think it could be a major reason alot of Lymies are not well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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LymeToo, I must confess that my interest in Celiac diets is more "academic" than it is personal in nature.
Personally, I've much more interested in learning to control the insulin response -- according to Ritchie Shoemaker's "fat book" and also Jennie Brand-Miller's popular diet books about the "glucose revolution" and the Glycemic Index.
I'm 99.99% convinced that the answer to the immunological-hormonal-neurological aspect of chronic Lyme disease lies with insulin control because of insulin's influence on the immune system and on other steroidal hormones.
Besides, the insulin control diets don't seem nearly as difficult to stick with as avoiding gluten and casein and everything else that goes along with a strict celiac diet.
As I said earlier, Ritchie Shoemaker's diet eliminates gluten anyway since it eliminates grains because they are high in amylose, but it does permit cheeses and milk. (His maintenance diet permits very limited use of grains later, after weight loss goals have been attained.)
Unless you are a true celiac patient, then you might want to look at Ritchie Shoemaker's diet book and also at the diet books by Jennie Brand-Miller which are best-sellers now in bookstores everywhere.
Oh, regarding milk, we buy Kroger's store brand of whole organic milk ("Naturally Preferred" label) because we can get vitamin D-free milk, which is very hard to find elsewhere. Hubby has done great with it these past two winters -- no colds or flu at all. Avoiding synthetic dietary vitamin D is an important part of the MP program which has helped our family so much.
Remember, most celiac patients (and autistic children) must avoid the casein in milk also. This aspect of the celiac diet might or might not be important for you -- especially if you learn to avoid milk products with synthetic vitamin D in it. (Some yogurt has synthetic vitamin D added now, too. Read labels.)
For years, our daughter thought that she was milk-intolerant -- until she finally figured out that it was the hormones and antibiotics and synthetic vitamin D in regular milk which was her enemy. After switching to organic, vitamin D-free milk, she's been able to drink milk with no problems whatsoever. Hooray!!
I can't help but wonder if vitamin D in our milk supply might not be what's bothering the autistic children, too. They even add synthetic vitamin D to goats milk now too, I think. What a shame!
Whole Foods carries some kinds of whole milk without vitamin D added. The FDA requires that vitamin D be added to any milk which has had its fat content altered, so only whole milk can be sold without ersatz vitamin D.
Are you getting confused yet, Dear TuTu? So many choices to consider. It's enough to rattle anyone's pretty head, isn't it?
PS -- I forgot to mention that Dr. Shoe's diet helps to cut the sugar cravings like nobody's business. I decided to give it a trial recently, and I'm surprised at how easy it is to stick with 'cause the sugar cravings vanished immediately.
I'm a sugarholic unless I watch myself. His diet is the easiest to adhere to of any diet that I've ever tried before -- so far, that is. I'm almost afraid to brag about it for fear I'll jinx it and then my sugar cravings will return.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Many autistic children are celiacs. That is one thing I found out.
Hmmm, Maybe DR S's book would help with my sugar cravings. They go way down as long as I'm VERY strict with the carbs. Is that basically what he advocates?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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LymeToo, Ritchie Shoemaker's diet differs slightly from the gluten-free diet in that it eliminates rice, which is considered to be hypoallergenic by most other dietary standards. He eliminates rice because of its effect on the insulin response.
Corn contains amylose, but it also contains an anti-amylase substance, so the amylose in corn doesn't trigger the insulin surge which many of the other grains do. That was a happy surprise because it's so easy to find Mexican corn tortillas and Italian polenta and fresh corn. I've been living on corn a lot lately without any trouble at all. I buy corn chips which contain no trans fats.
You'll want to read his book though because it is so different from any other diet book in print today. He's had 25 years of clinical experience and a good track record of success. Patients fly in to his little rural clinic from everywhere in the USA -- all by word-of-mouth because of his high rate of success with obesity (and MCS/CFIDS) patients.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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LymeToo, It's been several hours since I composed my last response, so instead of merely editing it to add another idea, I'd better create a new message so that you don't miss seeing it.
Ritchie Shoemaker's diet is totally different from all of the other "low carb" diets out there, which are so difficult to stick with because with those diets you get hungry and then glucagon kicks in to bring your blood sugar back up again. That Yo-Yo effect of hormones is very bad for you.
With Dr. Shoe's diet plan, you don't get hungry because you get enough protein and enough of the good fats, and if you get hungry, then you can eat proper snacks. The idea is to keep your INSULIN levels steady, which of course helps keep your blood glucose levels steadier also.
This diet is for INSULIN control, which is the key to managing diabetes, even more so than simply controlling blood glucose -- especially for Type 2 diabetes (adult-onset diabetes), which is the more common form of diabetes -- because so many other degenerative illnesses tend to accompany both forms of diabetes. Insulin surges are our true enemy. This diet controls insulin levels.
I'm liking this "low/no amylose" diet so much that I think I'll stay on it. It's NOT at all like any other "low carb" diets out there, all of which I despise with a passion. (Many celiacs might do well with this diet too, since it automatically eliminates gluten, as long as casein isn't a problem for them.)
I had decided to try Dr. Shoe's diet myself first before recommending it to a close family friend. I had heard a nutritionist speak at a medical conference once many years ago who said that she would never ever recommend any diet to a patient that she herself had not tried for at least a couple of weeks first.
Well, I was studying his books, so I decided to experiment on myself with his diet plan in order to gain a better, first-hand understanding of his ideas.
What a surprise! I think I've found a diet that I can live happily with for a long, long time to come. Let's put it this way -- when I go to my next high school class reunion, I want to be able to surprise my old girl friends.
We just had our 50th year HS class reunion this spring and most of them looked better in the group photo than I did. But most of them had been on the popular HRT (hormone replacement therapy) fad at menopause, and I had stubbornly refused to do that, so maybe that's why they looked so great.
I want to look great the "natural" way -- as well as look as good as my little 93 yo aunt does when I'm her age, too -- not to mention avoiding the degenerative diseases which go with being a senior citizen.
I'm really sold on Dr. Shoe's approach because it's a lifestyle, not just another blankety-blank, four-letter-word kind of diet. I HATE (other) DIETS! -- but I'm loving his eating plan, and I have more energy on it, too. I still need my afternoon beauty-rest siesta time, but I can (almost) keep up with the younger generation of my family now, energy-wise.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
How is his plan different from the glycemic index type plan? Seems it would be the same thing. [I hate spending $25 for a book that maybe I wouldn't HAVE to buy... ]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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LymeToo, Ritchie Shoemaker's book is only $15.95 at his wesite. It's $24.95 at Amazon. (It's not sold thru B&N.)
I'll have to review the Glycemic Revolution book again because I got rid of it after I decided that I wasn't really that interested in it anymore. I've put her newest book on order though at B&N, the one that just came out in June about what causes blood sugar to fluctuate, so I'll let you know after I get a chance to read it.
What I like so much about Dr. Shoe's book is that he goes into the science of it to explain why it works. I need to understand things in-depth in order to motivate myself to trust a new idea like this.
Furthermore, his book takes into consideration the 30% of patient who gain weight because of biotoxin exposures because they require special prior treatment with CSM (Rx to absorb the toxins), besides just doing the diet. Supposedly, both mold and Lyme patients fall into this category.
I've read all 4 of his books, and they are all among my most favorite books on my shelf. I refer to them often.
Posts: 4563 | From TX | Registered: Sep 2002
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bettyg
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EDITED: Since learning I "AM" allergic to gluten/wheat & rye and casein/cow's milk, egg whites, & 3 cheeses plus being a diabetic 2 patient, Tutu's post has had my full attention.
Tutu & TLM, my good LLMD on Monday, 7-3-06, told me I should be on the "zone" diet which is for gluten-free, casein-free, and diabetes folks.
Have either of you tried it? How different is it than what you 2 have been discussing here? Thank you both.
If the prices are are equal (or nearly equal), then I like to support his research work by buying directly from him -- as long as it doesn't cost me too much extra to do so, that is.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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Betty, The IgE tests for food allergy do not show if you have delayed type food reactions or not. For that, you need IgG testing.
Even then, I don't trust the food allergy testing though because it often show folks allergic to almost everything they eat -- thanks to leaky gut.
That's why I'm exploring other dietary options instead because the "rotation diet" backfired on our daughter. She became much more sensitive, with horrible MCS, during the two months that she tried to follow a strict rotation diet, after testing positive for such a large number of common foods. That was about 10-15 years ago though, long before we knew anything about LD.
Nothing helped her food intolerances until IV antibiotics, but then she relapsed again several months later.
Since then, the MP program has been the answer for her. She can eat whatever she wants now as long as it doesn't have any vitamin D in it (neither synthetic nor natural vitamin D). For her, the vitamin D-free diet has been her salvation after almost a lifetime of digestive miseries, plus many other intolerable symptoms too numerous to mention.
LymeToo, I should mention that Dr. Shoe recognizes Lyme disease, but he doesn't seem to understand that it can become a chronic, persistent, intracellular infection. He has bought into the mainstream propaganda that 3 weeks of abx will cure it, and if not, then 6 weeks of CSM will do the trick by getting rid of its biotoxins.
I plan to offer him info about intracellular persistence of Bb if/when I see him again at another medical conference this next fall -- if he attends, that is. Wish me luck! I hope he's open to reviewing it.
I suspect that he's been too busy with his own research to know about this aspect of LD yet, although it's hard to understand why not since he practices in a Lyme-endemic area. He seems to think that it's all genetic and that genetically predisposed persons can't get rid of the Lyme toxins.
I contend that there is a continuing antigenic stimulus, due to a persistant infection with Bb which continues to produce more biotoxins, no matter how much you mop them up with CSM. I've got a lot I want to discuss with him if I ever get another chance.
I also think I now understand why Lyme patients have such terrible "intensification reactions" when first starting to take CSM, but that's a whole 'nother different discussion topic.
Posts: 4563 | From TX | Registered: Sep 2002
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quote:Originally posted by TX Lyme Mom: LymeToo, I should mention that Dr. Shoe recognizes Lyme disease, but he doesn't seem to understand that it can become a chronic, persistent, intracellular infection. He has bought into the mainstream propaganda that 3 weeks of abx will cure it, and if not, then 6 weeks of CSM will do the trick by getting rid of its biotoxins.
Yeah, that gripes me. I noticed he had info on Post Lyme Syndrome, which of course I don't believe exists.
The amazon was without S/H...I think it's $5 or $6 dollars... I'll see if I can figure this out!!
Good grief...just checked his site and it says $12.95 plus 5.95 for S/H ....on your link.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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LymeToo, Yea, that's why he doesn't see very many hard-core, late-stage Lymies in his practice. They go elsewhere. That's not to say that he doesn't treat a lot of Lyme patients. It's just that he doesn't see as many of the really late-stage patients as the other ILADS doctors do. (I don't know if he belongs to ILADS or not, come to think of it, but he has spoken at one of their meetings.)
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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quote:Originally posted by Lymetoo: Good grief...just checked his site and it says $12.95 plus 5.95 for S/H ....on your link.
Yep, you're right about the price, TuTu. I gave you the price for the "Mold Warriors" book instead by mistake. I'm glad you caught that error.
Also, he charges only $1.50 S&H for each extra book after the first title that you order. That seems like a real bargain to me.
Posts: 4563 | From TX | Registered: Sep 2002
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bettyg
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Tutu, thanks for catching my mistake! I AM allergic to gluten & casein! Boy do I need to proofread my typing again! uffda.
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TX Lyme Mom
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Betty, You know what I've been wondering about? I'll bet that all Lymies are probably semi-celiacs-in-disguise because of the leaky gut problem caused by Bb's neurotoxin, which (probably) interferes with tight junctions just as Clostridia toxin does. (I think I explained about this earlier.)
Dr. Shoe has been saying that all Lymies tend to develop mold allergies, so I suspect that all Lymies probably have leaky gut and gluten-intolerance issues also for similar reasons -- ie, because of biotoxins and their downstream effects on the immune system.
If so, then this would allow undigested gliaden (from gluten) and casein molecules to sneak through into the bloodstream where they set up an immunological reaction.
I suspect that the real difference between true Celiacs and Lymies in regard to gluten is that true Celiacs have the genetic predisposition to destruction of the villi in their small bowel area but "semi-celiacs" (for lack of a better term -- ie, the non-genetic types) don't have the same degree of host tissue involvement. They would have only just the leaky gut issues, but not the autoimmune reaction against their own mucosal tissues.
This is just a half-baked hypothesis on my part. I'm curious about it, that's all, which is why I'm mentioning it -- in case someone else knows and can set me straight.
Either way, avoiding gluten (and maybe casein too for some individuals) might be helpful to many/most Lymies -- except that they probably won't need to be as fastidious about it as a "true Celiac" patient might have to be. I'm just guessing here, so don't place too much stock in my hypothesis.
I'm also wondering if "Rejuvelac" (homemade drink from soaking wheat berries which creates a lactobacillus probiotic specific for digesting wheat) might work effectively. I think it's called Lactobacillus salivarius, which is very hard to manufacture into a commercial powdered capsule but which is very easy and cheap to make as a homemade drink.
Drinking this homemade probiotic along with any meal which contains small amounts of gluten might help gluten-intolerant folks to digest the gluten more easily since this probiotic would be specific for wheat. I'm not sure if a true (ie, genetic) Celiac would be able to tolerate this or not, but I'd be willing to be that a "semi-Celiac" person might benefit from it.
Afterall, this sounds along the lines of what those researchers are trying to conjure up from barley enzymes into a treatment for celiac disease. (The post about that is on the previous page.)
The way you make Rejuvelac is to soak organic wheat berries overnight in the refrigerator. They tend to ferment if let to sit out at room temperature. You drink the liquid off of the soaked wheat berries, but you might need to flavor it with a bit of fruit juice for improved taste. It's a pretty hardy strain of lactobacillus so I doubt that the acid from the fruit juice would kill the living lactobacilli, unless you mix it with too much strongly acidic fruit juice, that is.
PS -- I'll be gone all day, so I won't be able to write any rapid responses today, in case I've left anyone confused about what I've tried to say in this message.
Posts: 4563 | From TX | Registered: Sep 2002
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mlkeen
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Somone asked about affording to eat wheat/dairy/corn and soy free. I buy nothing in a box. I buy meat, chicken and salmon and vegtables, now fresh because they are ready, but mostly frozen, because what is offered as fresh is very old most of the year.
I don't live near any whole food stores and super Walmart is the closest grocery store, pretty scary, but there are things there that I can eat. Then there is a locally owned grocery that has 6 kinds of wheat flour, egg noodles in many widths and locally made baked goods. Not a good gluten free store. Both of these places do have basic foods.
On today's Menu: Zuccinni sauted with onions and garlic and tomotoes with left over grilled chichen from last night.
To keep from loosing weight, think FAT, but only the good stuff. Olive oil drizzled on your veggies or meat is a great way to up calories and it has no trans fat or chorlestorol.
I've added about 1-2 tablespsoons of fat a day and as an added bonus no longer have dry skin.
Posts: 1572 | From Pa | Registered: Jun 2001
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I eat only organic now, I'm fortunate to have a Whole Foods 10 minutes from me.
My tummy is happily able to handle food outside of soup now so thats a plus.
I eat salmon, brown rice, veggies-all organic. Just like what was sad previously, add a tablespoon of flax, olive, coconut oil to rice, fish, veggies...adds at least 100 calories for only 1 tablespoon and these fats are essential and good for you as well.
breakfast: sheeps yogurt with raw organic honey (yes yes I know honey is a no no for yeast-but I'm so good in every other way haha). 2 hard boiled eggs
lunch: chicken veggie soup (this has alot of fat-from added coconut oil plus I don't remove any of the chicken fat when I cook it) rice crisps with goat cheese
dinner: broiled salmon with tblsp of olive oil, sliced op lime-layered on top of the spices and oil, dill, garlic, celtic sea salt and parsley mixed zucchini and yellow squash w/tblsp of coconut oil and celtic sea salt 1 cup brown rice w/tblsp of flax seed oil, garlic, celtic sea salt
at some point throughout the day I will also have a cup of rice milk, made from brown rice-about 130 calories
I know the brown rice is a no no for some yeasties-but I need the extra carbs for energy-I tried going without them and felt worse from it.
Besides I take a ton of coated probiotics, drink nothing but water, green & chamomile tea, and eat hardly sugar at all, with the exception of the honey and sometimes some applesauce or fruit.
posted
Thanks for the diet tips, Elley and mlkeen!
TXLM said, "Drinking this homemade probiotic along with any meal which contains small amounts of gluten might help gluten-intolerant folks to digest the gluten more easily since this probiotic would be specific for wheat. I'm not sure if a true (ie, genetic) Celiac would be able to tolerate this or not, but I'd be willing to be that a "semi-Celiac" person might benefit from it."
A true celiac would NOT be able to eat ANYTHING with any connection to wheat or other harmful grains. They have to be extremely careful.
I wish I knew if I am a true celiac or not. To have the "gold standard" treatment, I would have to eat the equivalent to 3 slices of bread a day for at least 3 months.
I'm not sure I'm willing to do that. I have, at the very least, an allergy to wheat. Doing this would also give me a terrible case of yeast....something I'm trying to kill out once and for all.
I could also take the tests through Entero-Labs in TX .. but I understand they have ALOT of positives and I just wonder about that process.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
this is off topic...but since all this started I have been having alot of odd woman troubles too...I think it may be possible that I have endometriosis
My lower intestines get an odd crampy feeling, but I have NO diarhhea. Also my uterus is achey 24/7 no matter what time of month it is....I'm also getting alot of in between period bleeding and my cramps floor me.
this seems to be common among Lymie women...I want to get this looked into and also ask if you have any suggestions for hormone testing.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Jill E.
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Lymetoo,
I was in the same boat as you in many ways. Prior to getting bitten by the tick, I had been through 20 years of gastrointestinal and other problems. I even had two unnecessary surgeries because of it. No doctor thought to check for celiac disease, although I had a history of all kinds of allergies.
When a new internist I went to happen to see me on one of those days that I was having terrible GI problems, he asked if I'd ever been checked for celiac. I knew what it was but had not been.
Unfortunately, he only ran a few of the right blood tests. He did not run the latest, most accurate blood test which is the anti-ttG. So then he just told me to research the gluten-free diet and go on it and see if I felt better. I did go on the diet and have been gluten-free for four years.
But I didn't feel better right away, not realizing that shortly afterward I had been bitten by the tick and gotten Lyme. But some of my GI symptoms have been greatly reduced with the gluten-free diet.
Once I did research and realized that a small intestine biopsy is the gold standard for diagnosis because it can see whether the villi have been damaged or completely destroyed, I tried going back onto gluten to prepare for it. But I got too sick and could not stay on enough gluten for long enough to make the biopsy valid. So I gave up and chose to be gluten-free. And even with a biopsy, they have to take enough samples from enough areas throughout the small intestine for it to give a good picture of what's going on.
You are right about Enterolabs. Many patients swear by Dr. Kenneth Fine's stool tests. Many Celiac Disease are skeptical because there are so many positives. It is much like the Bowen test versus the IGeneX test for Lyme. But I was at the annual function of our local Celiac Disase support group this weekend and several families there had been diagnosed through Enterolabs and were thrilled with the experience. So who knows.
But Enterolabs tests for an entire spectrum of gluten sensitivities, versus just true genetic autoimmune celiac disease, so perhaps that is why there are so many positives.
Dr. Fine is speaking here in person in San Diego in August and if I'm not having one of my horrible Lyme days, I'll try to go and can post what I find out.
Here is another option. You can do the genetic testing through Prometheus Labs in San Diego. That's what I did because I was already gluten-free and it was the only option left for me. It can not rule Celiac Disease in definitively, but it can rule it out if you do not carry one or both genes. At least you would know if you are genetically predisposed to Celiac Disease.
I'm sorry if I am repeating things I had already posted. I did not go back and read all the posts and I'm very fatigued today so I'm just kind of posting from scratch.
There are some true Celiac Disease expert physicians in Baltimore and Chicago, but I doubt any have made any connections with Lyme.
My personal opinion is that people with gluten allergies or sensitivities may be able to get away with a little gluten intake now and then - it may cause discomfort, but not necessarily the dramatic villi damage of true celiac disease (unless it's an analphylaxis kind of allergy like peanut allergies can be).
Those with celiac disease cannot ingest even a morsel because it triggers the autoimmune reaction, although the reality is, we all get a certain amount of gluten in our diets no matter how careful we are, because the legal standards allow a certain number of parts-per-million of gluten to be in a product and still be labeled gluten-free. And there is always risk of cross-contamination from gluten if you eat at a restaurant, prepare gluten-free food in a kitchen where others are preparing gluten-containing foods, etc. But there is a whole protocol about that too to minimize cross contamination, which I follow.
Hope this helps and sorry about rambling.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Jill, You're not rambling. That info is priceless. Thanks a bunch!
After reading and researching this Celiac topic further, I now recognize that I have another friend who needs to know about this, too. I'm printing your message out for her.
You see, so many of the patients I've known over the years have all been told to follow a "Rotation Diet", based on the assumption that they had leaky gut with multiple food allergies -- ie, IgG delayed food reactions.
They have also been told that the only way to cope with being allergic to so many different food families was to "rotate" their allergenic foods, by eating each food no oftener than every four days, and by not eating any food from the same food family any oftener than every two days.
These Rotations Diets are even more difficult that a celiac diet, if you ask me. Besides, for our daughter, a rotation diet made all her sensitivities just that much worse. She developed bad MCS within only a few weeks after starting a Rotation Diet, but her MCS went away just as soon as she quit that blankety-blank (expletives deleted) Rotation Diet.
The friends I have in mind both still follow a Rotation Diet to this very day. I do not envy them because it's not working very well for them since they still suffer from so many difficult health problems. I'll bet that if they were to eliminate gluten (and maybe casein) entirely, then they might not need to eliminate so many other foods also.
Therefore, knowing how to test someone for true celiac disease is a valuable thing to know. Thanks, Jill, for taking the time to share your expertise by writing such helpful answers and pointing out the newest advances in celiac research.
It's really hard when a person has two separate disease entities to research and contend with. Celiac disease is bound to compound the problems of chronic Lyme exponentially, and vice versa. I can't imagine how hard it must be for someone like you to have to deal with both of these very complex diseases.
PS -- I've got something personal to discuss with you, Jill, so please check your PM.
Posts: 4563 | From TX | Registered: Sep 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
LymeToo, "It's deja' vu all over again."
I felt so sorry for them because it's obvious that they aren't really getting well but are only just barely managing to dampen down their symptoms and avoid other worse problems from developing.
That's where we were 20+ years ago, back when those gosh-awful Rotation Diets were starting to come into vogue, thanks to popular book authors like Drs. Wm. Crook and Doris Rapp.
I know a few folks who are still on those impossible Rotation Diets to this very day. They're all as skinny as rails -- not slim like models either, but toothpick thin. Not strong enough to open a door against a strong wind. And not really very healthy either, only just not as sick as they might be by now if they hadn't managed to control degeneration in this desperate manner.
That's what I thought of that discussion topic -- in all honest truth!
I guess I'm not very subtle am I when it comes to my biases? Oh well, been there, done that, NOT going back. Ever, I hope.
By timely serendipidity, I received an e-mail reply from one of those Rotation Dieters who has been on the MP almost as long as my daughter has. She's still very careful about what she eats, but her digestive miseries and her food intolerances are finally starting to clear up now at long last, very slowly.
I'm sure that she's probably still rotating her foods, but now at least, she's finally making good progress against the underlying problem, which I suspect might be either Celiac or Crohn's, but she was never tested for either of those diseases, so she goes under the MCS diagnostic category.
Amazing, but it's a small world (for me) now all of a sudden. I think I'm starting to see how the bigger picture fits together -- maybe -- 'cause I know I've probably made this same braggadocious statement many times before as new insights were unfolding for me back then also.
Ask me this same question again next year, will you, and I'll let you know if I've changed my mind by then. (I doubt that I will change my view, of course, but I always like reserve the right to do so if/when I acquire new knowledge and insights.)
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by elley0531: this is off topic...but since all this started I have been having alot of odd woman troubles too...I think it may be possible that I have endometriosis
My lower intestines get an odd crampy feeling, but I have NO diarhhea. Also my uterus is achey 24/7 no matter what time of month it is....I'm also getting alot of in between period bleeding and my cramps floor me.
this seems to be common among Lymie women...I want to get this looked into and also ask if you have any suggestions for hormone testing.
Elly, You'll want to get info from the Endometriosis Association. I'm not sure what their recommendations are now about HRT because I don't keep up with them anymore. Our daughter's long-standing endo problems went away, too, as she started to heal with Lyme therapies -- all without resorting to HRT.
I hope to be seeing Mary Lou Ballweg again at the AAEM conference this next fall and let her know about everything we've learned since the last time I saw here at one of those meetings several years ago. She goes every year, but I was the one who quit going, so that's why it's been so long. Mary Lou is the founder of the Endo Assn.
The Endo Assn funded some research connecting endo to dioxen exposures, but I now suspect that toxin is only just the tip of the iceberg when it comes to environmental toxins.
I can't wait to tell Mary Lou how well our daughter is doing now -- no more endo symptoms at all for quite a long time now, ever since starting antibiotics for Lyme back in the late 1990s. I would avoid HRT though, if at all possible, because HRT does impact immunity -- whether the HRT doctors are aware of it or not.
I suspect that the Endo Assn probably endorses HRT now, but I'd look at their other recommended coping strategies instead of HRT, if I were you.
So that we don't derail LymeToo's Celiac topic too much, feel free to contact me privately if you want to discuss endo with me further.
Posts: 4563 | From TX | Registered: Sep 2002
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