posted
Maybe youve added something back in your diet to compensate the loss of gluten, and that is whats causing this reaction now? Otherwise you shouldnt feel worse. If you are sensitive to gluten then removing them from your diet should only result in an reduction of inflammation.
Posts: 381 | From The Netherlands | Registered: Nov 2013
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
i have had some gf raisin bread for breakfast a couple times. I have had cravings for sugar and have over indulged in orange juice.
I know it could be a coincidence, I was just hoping this wasn't yet another thing that could cause a detox reaction.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Gigimac, Our daughter was diagnosed with celiac five and a half years ago and has been strictly gluten free since that time. It was very rough for her at first though before it started to get easier and better. Some things started to improve noticeably and relatively quickly though -- especially brain fog and depression and fatigue -- which gave us both a lot hope and encouragement for continued improvement of other symptoms.
I did the GF diet along with her in order to learn it thoroughly so that she wouldn't risk getting sick from gluten exposure every time she came home to visit. I found the GF diet difficult at first also, but not nearly as difficult as she did because I was basically healthy, but she was going through what we now recognize as "gluten withdrawal" -- which is not really considered to be a "detox reaction" in celiac circles.
Another important concept for you to grasp is that you will become even more acutely sensitive to minor gluten exposures than you were when you were ingesting gluten on a regular basis. You will need to become familiar with the terms "hidden gluten" and "cross contamination" with gluten, especially if you do have true celiac, which is an auto-immune reaction to gluten.
Visit some of the celiac websites to learn more about these very important concepts of hidden gluten and cross contamination with gluten in order to insure your success with a GF diet. The two books that helped us the most to grasp the importance of these two basic concepts were these:
Dr. William Davis M.D., author of Wheat Belly, has documented gluten's effect on opiod receptors. The enzymatic peptides isolated during wheat digestion don't tend to create a morphine-like high, but they can tend to leave one with nagging hunger sensations, other cravings, and depression. http://www.wheatbellyblog.com/2012/04/wheat-is-an-opiate/
Not everyone is sensitive to these extreme withdrawal effects from gluten. She credits being gluten-free with not having to worry about relapsing with LD and co-infections. Since she has been gluten-free, she has been on antibiotics only just once for a severe gash. Other than that, she hasn't needed any antibiotics and she continues to enjoy her recovery.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
posted
Maybe you're sensitive to an ingredient in the gf bread. Some non-gluten grains can cause discomfort if a food sensitivity to that grain is triggered. I'm sorry you're having a bad reaction. The orange juice could be a culprit since they have quuite a lot of sugar.
Are detox reactions always bad; what i mean is, aren't some detox reactions "good" ones, such as feeling better after getting rid of gluten in the diet? I eventually felt so much better after going gluten-free.
I did the "Lyme Inflammation Diet" for a few months and it really helped. The first week is rough in that the only grain permissible is brown rice and many other foods are put on hold for a while, also. Then over the weeks, they're added back in to the diet slowly (except for sugar, or rather, refined sugar). Sugar is most always a big no-no.
However, I've heard that getting rid of all grains can be great for some Lyme patients. I can eat brown rice and oats ok, but cannot handle wheat well at all and there are many other grains that can be explored as to food allergies/sensitivities as well. I haven't taken the time to do that. I've got so much to learn about this disease and that takes more time!
One thing that we can incorporate right away is letting ourselves take steps instead of trying to take whole miles at once, which is how I used to want to operate in some instances. That's one thing that's nice about the LID : it's a very slow but steadily sure process in figuring out what our bodies can and cannot handle in the food department.
Posts: 35 | From Eastern U.S.A. | Registered: Feb 2015
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
how long does it take to see improvement if the gf diet is going to work?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by gigimac: how long does it take to see improvement if the gf diet is going to work?
Give it at least six weeks, but make absolutely sure during that time that you are not ingesting "hidden gluten" or that you are not being exposed to "cross contamination" with gluten.
These seemingly "minor exposures" to gluten are NOT the least bit minor! They are HUGE mistakes that can cause profound, acute and also longer-term symptoms which can become extremely confusing and frustrating if you don't understand the sources for these exposures, including even some medications. There's quite a lot of free info about "hidden gluten" on the web, such as these websites.
Did you notice the tidbits about glue on envelopes and also dry wall in the first link above? Both of those two things tripped our daughter up pretty badly until she did a quick Google search and solved the puzzle.
Another example is finding a crouton in your salad when eating out. It's NOT OK simply to lift the crouton out and eat the salad anyway because that minor form of cross contamination with gluten can be enough to send someone to the ER for an IV saline drip to replace fluids lost from dehydration caused by severe vomiting and diarrhea. Instead, the salad must be sent back to the kitchen with instructions to bring out another freshly-made salad without any croutons in it. Larger chain restaurants have trained chefs and managers who understand the importance of this, not to mention the liability issues involved for them, but smaller family-owned restaurants are off limits for someone with celiac because of the risk of cross-contamination with gluten by untrained staff.
Our daughter always carries GlutenEase (by Enzymedica) with her whenever eating out just in case of a mishap by a waiter in a busy restaurant. Furthermore, she avoids going to any restaurant when it's extremely crowded because of the chance of an accidental gluten exposure by busy waiters and kitchen staff who are not closely supervised during peak hours. She also avoids buffet lines, knowing that other patrons might not be careful about avoiding cross-contamination in the food line -- for example, by using a utensil that has touched gluten to serve another menu item.
This degree of avoidance isn't necessary for someone whose celiac gene hasn't been "activated". For example, I'm obviously the guilty parent in our family with the bad celiac gene, but I can get by with these kinds of minor exposures to hidden gluten because my celiac gene hasn't been "switched on" yet. Here's a link to my favorite article on celiac which has beautiful color illustrations to explain the science of celiac in simpler terms for lay readers: http://www.feingold.org/Research/PDFstudies/CeliacArticleAug2009.pdfPosts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
An easy way to find out if you carry the gene for celiac is a genetic cheek swab test offered by Enterolab. It's the best $149 we ever spent! https://enterolab.com/StaticPages/TestInfo.aspx -- Scroll down to the last item in the column on the right, designated as "Gluten Sensitivity Gene Test".
40% of the population carries at least one of the celiac genes, but unless your gene has been "triggered" or "activated", then you don't have the auto-immune form of celiac. It's a big advantage to be able to "rule out" celiac by finding out whether you carry one of the celiac genes. In my case, since I obviously carry the celiac gene, I know that it is important for me to avoid gluten in order to avoid the possibility of developing full-blown celiac later in life. Since I have not (yet) developed celiac, I have the advantage of not reacting so intensely to minor traces of "hidden gluten" and/or "cross-contamination" with gluten. Consequently, my dietary lifestyle is much easier to cope with than my daughter's more serious and limited restrictions.
However, it is still possible to be sensitive to gluten, even without carrying one of the celiac genes. That's where all of the other food sensitivity tests offered by Enterolab can be so helpful. Enterolab is the lab recommended by most of the celiac forums because their method of testing based on stool samples is so unique.
Furthermore, you do not need a doctor's signed lab order to be able to obtain testing because you collect your own samples (stool and cheek swab) in the privacy of your own home. The results are reported directly to you by e-mail and never become part of your medical records, insuring medical privacy, unless you decide to reveal it yourself.
Enterolab does not accept medical insurance, but the advantage of complete and total medical privacy is well worth paying for it privately, IMO.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
The symptoms of what we like to call "neuro-celiac" tend to be so similar to the symptoms of "neuro-Lyme" that it can be nearly impossible to distinguish when one disease stops and the next condition begins. For example, both celiac and Lyme disease can cause "cerebral hypoperfusion" -- ie, restricted blood flow to parts of the brain -- according to several articles on PubMed. (These are just a few of them.)
Another way that gluten can trigger systemic symptoms is be increasing intestinal permeability (leaky gut). Incompletely digested food molecules escape from the GI tract and gain access to the blood circulation, thereby triggering an immunological response. In other words, the immune system has to finish the job that the digestive system failed to accomplish, thanks to leaky gut.
By controlling one's diet carefully, one can often eliminate a lot of the systemic symptoms which we attribute to Lyme disease. In fact, Borrelia is capable of producing a low molecular weight, fat-soluble neurotoxin, according to Sam T. Donta's research, for which he filed a patent. This neurotoxin is very similar to Clostridia toxin, which is known for being capable of interfering with "tight junctions" and thereby triggering leaky gut).(No need to protect his anonymity by using his initials because his name is already so well known in the Lyme research community.)
Thus, anything which can help to heal a leaky gut can help to control systemic Lyme symptoms also. Here's a popular website about the use of a grain-free, Paleo diet for managing all kinds of auto-immune diseases, Lyme symptoms included: http://www.thepaleomom.com/autoimmunity
Personally, we find that a 100% grain-free diet is unnecessarily restrictive for us. We do very well with rice, certified GF oats, and with non-GMO corn products -- which are somewhat hard to find, with the exception of non-GMO blue corn chips and also corn polenta imported from Italy where GMO crops are not allowed on the market.
Another of my daughter's favorite GF cookbook authors is Elana Amsterdam because all of her recipes are low glycemic and surprisingly simple and delicious. Elana is an MS patient who has managed to avoid those awful MS drugs by maintaining tight dietary control. Our daughter is very sensitive to blood sugar swings, but she has no trouble at all whenever following Elana's recipes, especially her dessert recipes because they are all low glycemic.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
Maybe you're sensitive to an ingredient in the gf bread. Some non-gluten grains can cause discomfort if a food sensitivity to that grain is triggered. I'm sorry you're having a bad reaction. The orange juice could be a culprit since they have quuite a lot of sugar.
- Many GF breads are bothersome, especially as so many are full of potato starch. Best success comes from eliminating as many grains as possible.. ALL if you can.
Same with sugar.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Another food additive that many celiacs do not tolerate is MSG, even though it supposedly does not contain gluten. Some Lyme patients do well to avoid MSG, in addition to avoiding gluten. Here are a couple of websites about MSG sensitivity: http://www.msgmyth.com/
MSG has even been linked to Morgellon's Disease, a form of Lyme disease with painful fibers in the skin, but I don't remember which MSG website had that info. I happen to know personally the director of one of the leading Morgellon's websites, and I don't think she concurs with this idea about curing Morgellon's by avoiding MSG in all cases -- but hey, if it works to avoid MSG for even just a few Morgellon's patients, then it's certainly a healing strategy that's worth giving a trial.
At the very least, one might be able to get rid of some troubling neuro-Lyme symptoms by being aware of dietary MSG and by avoiding it very carefully.
If you CAN tolerate limited amounts of MSG, then there is a gluten free form of soy sauce that is permitted on a celiac diet -- namely, tamari soy sauce, since it is made without wheat. That's the only kind of soy sauce that we use in our kitchen at home.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Many commercially prepared GF breads contain other ingredients that sensitive patients cannot tolerate -- especially xanthan gum and/or guar gum. I can't remember WHY these are supposedly such highly offending foods, but I do know that many sensitive individuals cannot tolerate them well or even at all.
The magazine (1st link) contains useful substitutions for many other allergenic foods besides just gluten. It substitution guide is found in every issue on the last two pages and it is a very dependable resource.
The ATK cookbook (2nd link) is fantastic also. I'm not keen on baking, but after nearly six years of GF cooking at home, I finally learned how to make acceptable cous cous and Tabouli substitutes. I also learned how to cook short-grain brown rice successfully after having given up completely because mine was always so sticky and gummy. It also has a fool-proof recipe for favorites like GF chicken-fried steak, which I had quit trying to imitate at all because of so many previous homemade failures. I even made a decent GF pizza crust that is better than any of the commercial GF pizza crusts that I've tasted yet. It's priceless, and it's my favorite GF cookbook of all on my bookshelf so far.
The ATF GF cookbook is not as low glycemic though as Elana Amsterdam's cookbooks, mentioned in a previous post, so it's really hard to compare those two books. Both are favorites, but for totally separate reasons.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
As of Feb 7th we put my child on a restricted diet where we cut out a lot of things: gluten, dairy, soy, eggs, potatoes (food sensitivity test showed strong antibodies against all those foods).
His arthritis type symptoms have not improved over the two weeks since starting this diet. In fact it has gotten worse.
I'd be interested to know if indeed it is a detox reaction/healing crisis and maybe the worsening is a precursor to improvments?
Kind of hard to stick to it when we are taking shots in the dark and we do not see it working.
Posts: 655 | From USA | Registered: Sep 2007
| IP: Logged |
posted
If you're eating less of one thing, you're eating more of another. I'd look carefully at what you're eating more of. I never did well on gluten substitute foods. It ended up that rice was worse for me than wheat, so when I ate gluten substitutes I got worse.
Eat whole foods ... meat, eggs, vegetables, fruit, quinoa, millet, wild rice (not a mix) ... and see what happens.
It just doesn't seem that cutting out gluten should make things worse.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Thanks for all of the responses. I will check out the links. I am still finding this hard. I keep worrying things might be contaminated and this is for nothing.
i think at least I am eating healthier cause I am paying very close attention to everything that goes in my mouth and keeping a journal.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
Keeping a journal is a really good way to figure things out.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
yes, I mean i have looked products up online that manufacturers say are gluten free but worried it may have gluten and I don't want this trial to be pointless.
Like, i did allow myself a few lays chip today and they are supposed to be gluten free but some say they felt like there was gluten in them. I can't "feel" the gluten so I wouldn't know.
Probably should skip chips for now but was craving something besides meat and veg.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Gigimac, Another way to discern whether you might have celiac or not would be to ingest a tiny bit of gluten intentionally after you have been completely off of it for at least a month or longer, without any slip-ups. Celiac patients usually become much more acutely sensitive to gluten after their bodies have had a complete and total break from it. This phenomenon is explained in the book by Peter Green, MD which I mentioned in a previous post.
WARNING: Sometimes these acute reactions to gluten can be quite severe, so be prepared with some activated charcoal and some GlutenEase (by Enzymedica) on hand in order to prevent a trip to the ER if your reaction should be unusually severe. I've forgotten what else our daughter carries with her to abort a severe reaction requiring a trip to the ER from an accidental exposure to gluten, but I know that it does involve an Rx medication (ondansetron, Zofran). After all, the insurance companies don't like it very much if someone has to make too many frequent trips to the ER, so she tries very hard to avoid doing so.
I would be quite surprised if this same intensity of reaction to gluten would occur in someone who is merely sensitive to gluten but who does not have celiac though. For example, our daughter did experience increased gluten sensitivity following several accidental exposures to gluten, but I never experienced it to this same degree -- although I did notice an increased sensitivity to gluten for the first couple of years after I decided to remain gluten free. Now though, over five years later, I can "get by with" ingesting very small amounts of gluten without noticing ANY sensitivity at all, even though I am a carrier of the celiac gene. I take this to mean that any previous minor damage to my GI tract from gluten has healed by now.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Haven't read this whole thread but it could be the raisins in your raisin bread.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
TXmom,
what symptoms did you have when you had gluten again after stopping it?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Gigimac, My gluten sensitivity symptoms were morning headache requiring Excedrin and morning hip stiffness. I had obviously been sensitive to gluten for many years -- probably starting sometime around perimenopause -- because that's when I first started to get morning headaches. I took Excedrin to start my day everyday for the next 2-3 decades until I gave up gluten when my daughter was diagnosed with celiac. Surprise, surprise. No more morning headaches and no more Excedrin. Then I also began having morning hip stiffness around the age of 65 and just assumed that this was a normal sign of ageing.
Funny thing though. My daughter who is 25 years younger than I am had the same kind of morning stiffness. We called it her elephant walk because she lumbered around for the first half hour after waking up until she got limbered up. Stretching exercises just made the stiffness worse for me. That's why I resorted to Aleve to help me limber up for the day.
Voila! After going gluten free, no more morning stiffness and no more morning headaches, which tended to last all day unless I stopped them with Excedrin. Therefore, no more Excedrin and no more Aleve -- unless I forgot and ingested gluten accidentally (or even intentionally, just for the heck of it). Bang! Rebound headaches and morning stiffness which lasted for the next 3-4 days until the gluten was completely out of my system since 3-4 days is the average transit time for food to be digested and eliminated, especially as we get older.
I feel 5-10 years younger now than I did five years ago before going gluten free. Even my doctor tells me that I look and act 10-15 years younger than my true chronological age.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
wow, that's great you got those symptoms to go away by eliminating gluten. I hope I have good results, we'll see.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic