posted
I've recently went Gluten Free and it is a pain, but so far I feel so much better. I didn't realize how much it helps until my wife accidentally cooked with gluten tonight, and I feel TERRIBLE.
I'm wondering how many people out there eat gluten free, and if so, does it help you?
Posts: 641 | From Nevada | Registered: May 2009
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posted
I do, but I haven't noticed any differences. I have been doing it 3 months now and I have cheated 2 times and both times I cheated, I didn't feel any worse... I am going to keep it up though.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I am gluten-free, and I have one Celiac gene but tests for Celiac were negative.
If I cheat or am exposed to gluten (even airborne), then I have diarrhea, painful cramps, migraines, and stomach distress for anywhere from 6 weeks to 6 months after the exposure
(airborne; I don't know what ingesting gluten would do to me now that I've been off gluten for 6 1/2 years).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
I'm GF. Other than the Lyme, etc., symptoms, I feel better than I have in years. It's stunning how much clearer I feel - clear head, skin, etc. For someone with Lyme, I have a surprising amount of energy. I attribute it to diet.
It will get easier, I promise. The biggest thing I can think of is that you not just replace gluten baked goods, etc., with gluten free replacements. Some are ok, but people tend to go overboard. Try to stick with primarily proteins, safe whole grains (brown rice, quinoa, and others), fruits and vegetables, and nuts.
GF eating is MUCH easier in warm weather months, when there is so much fresh produce.
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
I have been wondering about this as well. A lot of LLMDs seem to think it is important to eat gluten free. I wonder why?
I've been completely gluten free for about 3-4 months in the past and can't say I noticed a difference.
Just for my peace of mind, I am eating about 95% gluten free these days.
I wonder if anyone got well without eating gluten free?
And I also wonder if it is an all or none thing or if cutting down on gluten is still beneficial?
Posts: 581 | From CT | Registered: May 2008
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posted
Way back a few years ago I was diagnosed with depression .....inaccurately but I tried to take antidepressants. They didn't really do anything for me and I was able to go off of them oncenI went GF. It made a huge difference at the time. Giving up sugar mad a big difference too so if you don't feel a difference it could be because of sugar or other foods that you are still sensitive to.
My youngest daughter has multiple food allergies and sensitivities so it was relatively easy for me because I already knew what to substitute. The hardest thing is baking. I go with prepared mixed over trying to make them myself. Cherrybrook kitchen makes some good mixes.
Dd is also severely allergic to egg so we bake without egg as well. I had to hit the owner of a local GF bakery up for good substitutes. She was great.
Good luck
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I am gluten free, sugar free, starch free, alcohol free....I can honestly say it doesn't seem to make much difference in me but I will stick with it because I know I am eating a healthier diet.
I agree with Rera, I don't attempt to substitute anything. I've looked at the nutritional content on some substitute products and the carbohydrates seem overwhelming. I just sigh, suck it up, and know I am eating better.
For what I eat and how little I eat, I would think I would be a few pounds lighter and leaner.
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
Koo. I totally agree about the weight loss. I eat healthy and not a lot. Feel like I gain weight on abx. Jut something else to ad to the frustration
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I am gluten free but just as important for me is to be high arginine food free which is what feeds the fry bug. When I started taking interface plus to go after biofilms and started gluten free/ and low arginine foods, I went into a whole new level of herxing. Nuts were a high arginine food that was important to get out of my diet.
Posts: 805 | From Utopia | Registered: Feb 2006
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Yes, I've been gluten free for a very long time. I makes a big difference for me mentally and physically.
There are a lot of studies coming out about the downside of all grains......what price health!! Our culture being what it is, it's a great practice in being your own person. What did ancient man eat?
Do you hear an echo of my prejudice toward the cave man (paleo, stone age) type menu plan?
Have a great day!!!!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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I ate gluten a few days ago, and my skin is a mess.
If I eat anything with Gluten, i get a severe skin reaction, blisters around my mouth and forehead. However, my stomach is okay.
I also have been snacking on nuts and noticed now that i am having issues with that too.
I am trying to go sugar free and I am finding that more difficult than GF.
Posts: 23 | From NJ | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not sure if it was triggered by infection or evident my whole life [seemed to have been "born tired & dazed"] and I just did not know it, but I have been diagnosed with genetic celiac.
Now, I had serious G.I. distress on and off for years. It even took me to the ER a couple of times.
But, when first tested, they did the test wrong: did not inform me that I needed to be eating a substantial amount of gluten daily (2 pieces of bread) for a couple weeks. By then, I'd learned to avoid it.
Later, a different doctor suggested a genetic DNA test which did not require consuming gluten.
It took me years to learn never to rely on anyone for accurate information regarding ingredients they bring to a pot luck. Never. Inevitably, something is added that contains hidden gluten. [The same goes for asparatame.]
For me, now when I get a trace of gluten by mistake, it does not affect the stomach as much as my brain - and within 3 days an intense seizure hits (worse than the usual ones).
So, I've stopped eating others' cooking unless I see them make the dish. I can't go out, so eating out is not a hurdle that it can be for others.
[edit jump]
The neurological effects of gluten can be devastating for some with celiac.
Being diagnosed correctly with a genetic celiac was a tremendous help to me. At first, it seemed like there was nothing I could eat.
But, now, I see that there are hundreds of fabulous foods available for my delight. With garden herbs and spices, the combinations are endless.
Real food is the best fuel. So much of the "gluten-free" packaged food is just junk, but a few things are very nice, indeed. It all depends on ingredients and how "whole" the food it.
As certain infections can trigger celiac to come out of hiding, and (just MO here, but) I think there may be a sort of "temporary celiac" of sorts that may subside after infection in clobbered but if one has a genetic celiac, it's vital to honor that information.
I see now why most LLMDs strongly suggest patients be strictly gluten free.
I think genetic testing first is important, partly, so that family members can also be evaluated.
Celiac can kill. Make no mistake about that. I think everyone should have the genetic testing.
I think we would be very surprised at how prevalent it is -
- but testing would also shine a light on who can then afford to add a bit of gluten back in after lyme treatment has succeeded. If celiac, even a crumb can be dangerous.
Even if someone is not celiac, it just seems to usually help so very much to heal the lining of the stomach which takes a huge hit from lyme complex.
posted
beachmom... Yes, going sugar free is way harder than gluten free. But you get used to it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- opus,
You might consider getting the genetic DNA test for celiac. If celiac, 95% gluten free won't work. It can't be even a trace. Not even a trace.
However, if you are not celiac, then you'd know that you might have more leeway, or at least when lyme treatment is done.
Why avoid gluten? Mostly due to the lining of the stomach which is already severely damaged for most with lyme
Search: Leaky+Gut -------- & Leaky+Gut, Gluten
But, I also think many of the LLMDs know the devastating effects that gluten can have neurologically. And, to sort all this out and give patients the best chance at recovery, being GF can be a vital key.
While you say you notice no difference being 95% gluten free, even a trace of gluten can cause severe symptoms - and some that would surprise us but also some that may be lesser evident but still foundationally important.
I suggest that during lyme treatment, you might see how being 100 % GF might be a different experience than 95 %.
This is not like a weight loss diet where balance can be obtained with calories shifted. Even a trace of gluten can torpedo the process - for up to six months after ingestion.
Yes, for celiacs, effects of one wrong bite can last up to six months - I'm not sure the details but that is from a PubMed abstract I saw years ago.
For instance, a person with celiac (were they to actually find a piece of bread that tasted good and could be toasted) well, they could not use the same toaster that had regular bread in it, ever.
They would need a dedicated GF toaster. It's that important.
[Actually, Trader Joe's has a very nice GF brown rice bread. But I still find it just too simple of carbs. I enjoy moderate amounts of whole non-gluten seeds and grasses like Quinoa, Wild Rice, etc.]
------------------------------------------
Google: Hidden+Sources+of+Gluten
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There are several of different lists (and each one may have a few details the other misses) so be sure to see those from the major celiac organizations.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
My daughter was GF for 2 solid years, decide to put her back on, and then I find out I have a gluten intolerance (not celiac disease) and had to go GF. Great irony.
Anyway, my feeling has been that removing 100% (can't be 95%, sorry) helps with inflammation.
First 2-3 weeks GF for my young daughter years ago, wow! She was clearer thinking- and opened up and talked more. I think it was because we reduced inflammation. Did not know about Lyme at the time.
So, I've been GF for around 6 weeks now- 100%, I knew how to do it. I could be better at laying off the GF carbs. But I do seeing better 'digestion' in myself.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
My teenager won't touch gluten. It makes that much of a difference in how she feels. That's saying a lot for a teen.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Keen. Lol about the decent tasting GF bread. So true My daughter has had multiple fa's since birth so she is at an advantage having never tasted real pizza bread or baked goods. That is why I am shocked at kidsgotlymes comment about her daughter. To take it away and have your dauber keep it out of her diets super impressive to say the least.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Thank you Keebler, I am going to be 100% gluten free and see if I notice any difference.
I did not realize that even a crumb could cause symptoms and I have definitely had more than a crumb!
Posts: 581 | From CT | Registered: May 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Opus, my understanding is that gluten, like sugar, causes inflammation (something none of us need).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Going GF was the only thing that lessened my symptoms after months of illness with Lyme, which my doctor wasn't "able" to treat beyond initial abx due to negative tests. It helped tremendously, I got most of my energy back, mindfog down at least half, my joints still hurt but not debilitating.
I recently had to eat gluten again for a month for the gluten test, which I tested negative on (I have a talent for negatives). I didn't feel poorly right away, but now that I'm back GF, I have had a resurgence of symptoms. I also blame a badly sprained ankle. Seems like if I'm sick or injured, the little buggars go nuts.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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posted
I went gluten free for 3 months but didn't notice any difference at all from it. I have remained mostly gluten free since then though (only eating it every once in a while) just to be on the safe side with Lyme etc.
Also previous testing didn't show any gluten issues for me either. I had stool testing as well as intestinal biopsies done and didn't show problems with gluten. So for me the gluten free trial was just one more way to rule that out as an issue.
I know that for a lot of people going gluten free can make a big difference though so I do think it is worth it for everyone to try at some point.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
My LLMD requests a celiac test prior to the consult. But even with a negative test she still believes GF is the best way to go along with sugar free, yeast free and alcohol free.
She had lyme and she said she noticed a huge difference went she went GF.
Posts: 98 | From Ontario | Registered: Feb 2012
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My husband was gluten free for 6 months. He hasn't noticed any bad effects after eating gluten again, though he is mostly gluten free because he knows its a good thing to avoid if you have Lyme.
He did allergy testing and egg was one that did make a huge difference when he quit eating it. His "blithering" headaches went away. They only come back if he accidentally gets egg in something. He will avoid eating anything that might have egg in it.
Posts: 2600 | From USA | Registered: Aug 2011
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posted
I have been GF for 20 months as well as msg,alcohol,sugar aspartame.Seems to be a key tool to fighting this disease complex.
I recently read that in North America the average person has a likelyhood of 1 in 100 of being Gluten intolerant, if you have Scottish heritage that goes way up to 1 in 18.
Our family is second generation off the boat from Scottland,my daughter and I are both gluten intolerant,other family members have not been tested.
Posts: 342 | From northern california | Registered: Dec 2010
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