posted
After being diagnosed with Lyme I was advised to go Gluten free. I have been doing this for 5-6 weeks. It has been going well (as can be). I tried to add back some sprouted bread & it seemed to hurt my stomach. Should I continue indefinitely gluten free? Should I get tested for gluten intolerance?
What is the connection with Lyme and gluten free? Why is gluten free better when you have Lyme? Are there any references for this? Finally what about oats? I have read that some oats are ok for gluten free but they seem to be very expensive. Any ideas?
Also, I am trying to stay away from dairy and sugar. Is this helpful for Lyme?
thanks for any and all help...Randy
Posts: 164 | From California | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Easy questions first. Yes, avoiding dairy can be very helpful if you are one of the many who get phlegm production from consuming dairy products. It is well known that sticky phlegm provides an incubator atmosphere for all sorts of bad boy germs and phlegm also leads to inflammation.
Some people do okay with sugar free yogurt products. That would be an individual response but also can vary from time to time.
Lyme aside, there is a doctor who has written a book called "Don't Drink Your Milk" and explains his thoughts about diary being like glue to our immune systems. by Frank A. Oski - you can search Amazon for details.
As for sugar. Yep. You guessed it. That's best to forget. Artificial sweeteners are also off limits. However, a plant sweetener, STEVIA, is okay.
=========
It is best to stay on a gluten-free diet until all your symptoms are resolved and you have been finished with lyme treatment for several months.
Then, you may be able to slowly try adding a small amount of spelt but that would be 6 months or more away under the best circumstances.
As for testing for gluten sensitivity. I would not bother. Nearly EVERY lyme patient is sensitive to gluten and many more have what is called celiac disease, as condition where the body can't handle gluten at all. Technically, this is not an allergy and not even a sensitivity but something more pronounced - usually genetic or acquired from infection.
If from infection, perhaps but not necessarily, when the infection is cleared and the gut has healed and less stress is on the body, it may be possible for reasonable amounts of whole wheat, rye or barley to be enjoyed again. Or not.
Oats, for some are okay but not everyone. If you try oats, get them from a plant that does not process any other gluten grains.
Being gluten free, in my opinion, is one of the most important things a lyme patient can do. Gluten can cause many of the problems we see with brain fog, inflammation, and pain - as well as stomach trouble (although not everyone, even with celiac, has stomach manifestations.)
You can search LymeNet for the many previous thread about gluten or celiac:
posted
If you added the sprouted bread and had a reaction, then perhaps you do have gluten intolerance.
Lyme and other infections can cause one to become gluten intolerant.
If you are truly gluten intolerant then you will do much better following the diet. It will help your body so you can get well.
Don't eat oats unless you know they are gluten free. I just avoid them anyway. As you say, they are very expensive.
Staying away from dairy and sugar is also good if you have Lyme, esp if you are on abx.
Getting tested now won't work. You have to eat the equivalent of 5 slices of bread per day for 90 days before testing. Otherwise, the test will come back falsely negative even if you have it.
I wasn't willing to kill myself to get tested!!! I already knew I reacted to gluten and did have one test that was positive for gliadins.
hope this helps
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
You guys must be angels sent from heaven...thanks so much for your quick responses...you have really helped to clear some confusion (and fog)...Randy
Posts: 164 | From California | Registered: Aug 2009
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posted
I dont get it . I always ate bread and consumed lots of milk products (at least till I came to US - your yougurts, milk , cottage cheese and sour cream absolutely blow) never had any problems related to them.
Milk products are healthy -they have good composition of nutritional elements (especially cottage cheese and sour cream) - good kind of fat , no carbs (well that unless you buy US one - you add carbs and sugars everywhere!), proteins
Certain racial genotypes are more susceptible to have that problem but I dont think its true for everyone (e.g. asians are known to be lactose intolerant)
And gluten wise I read its only like 2% of people who are intolerant.
Posts: 856 | From MA | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Randy,
Check the label for that sprouted bread and see if barley malt is added. If so, that is clearly gluten.
There are some sprouted bread products that do not contain barley malt but you have to really hunt them down.
Even with the line of Food for Life Ezekial bread products, some have barley malt and some do not.
Technically, if the product is truly from the sprouted grain and no wheat, barley or rye product or by-product has been added, it should be okay. Except that it just depends on your reaction.
There is a difference of opinion regarding the sprouted breads as well as the green powders that contain wheat grass juice and barley grass.
I have the genes for celiac but do very well with the green powders. I've not yet found a sprouted grain bread that I can tolerate, though, all I find contain barley malt (sigh!).
Trader Joe's does have a decent brown rice bread on their bakery shelves but of all the refrigerated case breads I've tried, I've been disappointed, especially since many of them are too sweet - containing fruit juice and are far too sweet. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Getting tested now won't work. You have to eat the equivalent of 5 slices of bread per day for 90 days before testing. Otherwise, the test will come back falsely negative even if you have it.
Hmm I eat 2-3 slices per day usually. I can eat whole piece of bread if there is nothing else to eat -never had any negative consequences
Gluten test was negative too .So I guess I cant have it!
Posts: 856 | From MA | Registered: Jul 2009
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posted
Coltman, I do what works for me. Dairy is not good for most people. They just don't realize it.
For me, eating gluten is not an option.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Coltman,
First, I am very glad that you do well with this. Just checking - or clarifying for others with similar questions about testing:
Were you tested specifically for celiac? Gluten tests for allergy or sensitivity are not the same.
My allergy tests were negative for wheat and gluten and the celiac stomach biopsy was negative (because they did not tell me I should have been eating wheat - I had been gluten free for months). However, when I would try to eat some bread I would nearly die. I knew something was not right.
Years later, the genetic test was 99.9% for celiac. It helps to know.
The thing with gluten is that, for those who react, some of the symptoms can be identical to lyme symptoms - and some can take a few days to hit. Headaches and body pain can be a result.
Not trying to talk you into this but gluten has been so connected with the stomach that many don't realize the full canvas that can be affected.
I also have a friend who cannot eat bread here in the states as she gets a horrible headache and weakness. But, several times on vacation to Europe, she did just fine eating breads in many different countries. She thinks its the way American bread is grown or processed that gets her.
In any case, organically grown whole grain would at least be much better on the glycemic index - keeping blood glucose stable. Adding some nut butter, too, helps prevent a drop in blood sugar as happens frequently with lyme patients.
As with any food, it is best not to eat it every day - taking at least one day off a week - and a week off now and then - can help prevent allergies from developing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Were you tested specifically for celiac? Gluten tests are not the same if they test for allergy or sensitivity.
Gliadin antibodies blood test. Reliable?
quote: The thing with gluten is that, for those who react, some of the symptoms can be identical to lyme symptoms - and some can take a few days to hit. Headaches and body pain can be a result.
Kinda hard for me to think I might have it since its the foods I consumed all my life and always been major pieces of my diet. And I generally dont have any GI problems (I would think GI symptoms would be first indicator)
And well another thing is if I start following this "gluten-free" "lactose intolerant" diets I will have nothing to eat ! And it will take too much of currently limited time and energy to control them . I am kinda sorry for people who have to follow those diest
Posts: 856 | From MA | Registered: Jul 2009
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quote:Originally posted by Keebler: - I also have a friend who cannot eat bread here in the states as she gets a horrible headache and weakness. But, several times on vacation to Europe, she did just fine eating breads in many different countries. She thinks its the way American bread is grown or processed that gets her.
In any case, organically grown whole grain would at least be much better on the glycemic index - keeping blood glucose stable. Adding some nut butter, too, helps prevent a drop in blood sugar as happens frequently with lyme patients.
-
My sister developed gluten sensitivity(among other allergies) when she contracted lyme.
Before she KNEW she had lyme, of course.
When she was in France back then, the bread didn't bother her like it had here.
So it may be how it's processed or the soil itself. Of whatever type of wheat strains are grown?
I don't have the sensitivity that I can tell, but keep as low-carb as I can. Occasionally I have whole wheat bread(pref organic like you said) but only very occasionally.
I prefer almond flour (altho my sister is allergic to that too) and coconut flour --in particular -- for baking, when I have the energy to do it.
I sorta have a carb addiction so eating whole wheat even, is a slippery slope for me.
I feel I feel better for not eating wheat when I avoid it altogether. And my weight is far more stable as well.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Coltman,
I'm not trying to take away your foods, really. And, since you probably did go off wheat for a while when you were figuring all this out and you noticed no difference then, perhaps you are lucky. But, there are MANY non-gluten whole grains that can be enjoyed in moderation, too. Quinoa is the top of the list.
As for the test you had, I can't say - and I'm fading fast. You can look for the testing at www.celiac.com for details.
--
you said: " . . .would think GI symptoms would be first indicator)"
Usually, but not necessarily. The literature details a few who have had zero G.I. symptoms but had gluten affect the brain.
posted
I developed gluten allergy and confirmed celiac disease (biopsy showed flatened villi) after a bad bout of lyme in 2005.
Did it come on from the Lyme or from all the antibiotics or both? Who knows...But I did not have it prior to 2005.
I have had lyme numerous times since 2005 or never completely got rid of it. When I am having a flare up - like now - I have to be super sensitive to gluten, dairy, and soy as they seem to make my symptoms worse.
My symptoms are not just GI but are also systemic, i.e.; headache, joint pain, neuro. and gum sensitivity to name a few...
Posts: 376 | From New Jersey | Registered: Jun 2009
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After having Lyme and taking antibiotics along with probiotics, it is common to develop some amount of so-called "leaky gut" which just means that larger food particles cross through the intestine before being completed broken down. This can lead to food allergies.
I have felt a lot better after going gluten free. It has been about three years now. In the first few months of going gluten free, I was not sure it was helping. It can take a long time to rebuild the tiny villi inside the intestine which have been destroyed by gluten sensitivity. Also, it takes awhile to learn to avoid all of the foods which contain gluten-- many that you would never suspect.
In general, try to avoid processed foods as many contain gluten. Trader Joe's has at least three good gluten free fresh bread products plus they have GF frozen waffles and pancakes. Whole Foods has a tasty frozen pie crust if you want to make a pie. Bob's Redmill brand has brownie mixes and other mixes. Pamela's baking mix (at Whole Foods) makes good pancakes and can be substituted for white flour in recipes.
I have gotten into cooking with fresh ingredients a lot more than I did before going gluten free and as a result, I have become a much better cook. That has been a side benefit. As far as health benefits, I have less fatigue, far fewer migraines and my stomach pain went away but that last symptom took a long time to resolve.
I never bothered with the bloodtest because I didn't want to eat gluten which is required before taking it.
Posts: 156 | From MA | Registered: Jul 2003
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posted
Keep in mind that if you are having troubles that the culprit doesn't need to be gluten.
Many people develop allergies to food (soy, corn, legumes) as my sister did which even further restricted her diet.
She had been vegetarian and had to resort to meat/animal products to obtain her protein b/c of the new allergies.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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massman
Unregistered
posted
coltman - we are about the only species on the planet that eats another species milk on a regular basis.
And we "process" it - save it, heat it, spin it around, cool it, store it in plastic (with who knows what kinds of chemicals). Reduce the fat. Totally get rid of all the fat
Then the BS in selling it ! For babies. For osteoporosis and more. We cannot physically digest it and actually get much calcium out. But most Americans think they will die and go straight to he!! if they and especially their kids do not continually eat it.
perhaps you should further explore what goes on your plate. And in your belly.
But the selling "spin" is done so well
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think it's important to have immense compassion as we share information about any dietary changes.
I think everyone is doing the best they can at this point in time. Information offered is in the spirit of helping. It can take a little adjustment and energy at first to find new things to eat. I remember what a shock it was to my exhausted brain to even think about all this.
So, I hope no one here feels like anyone is judging them - most of us are just sharing information that has made a difference for us.
Food can be glorious (more so if I were to have a chef!) and there are still many fabulous foods, herbs, spices, seasonings and flavors that can enrich the quality of our lives while still nourishing our cells.
----
In the meantime, I just found an old love that has been absent from my local stores: gluten-free FALAFEL mix.
And, so as not to deal with the bad boy hot oils, I BAKE falafel into a sort of bread (key word: sort of). It was great. I can't wait to order this again. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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THEY ARE 100% SUCCESSFUL TREATING WHEAT/GLUTEN ALLERGIES AND 100'S OTHERS. READ THE THREAD ABOUT AI MOVING ON LN. HEALING LEAKY GUT IS A MUST TO GET WELL.
TAKE CARE.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
I hear a lot that Lyme patients must give up wheat, gluten, dairy, etc. I think that we are probably painting all patients with a very wide brush.
Certainly there are people who are sensitive to gluten and are best avoiding it. And there are people who develop food allergies when they are sick.
However, I think that the "gluten scare" is probably overhyped. If you feel fine eating bread, great. If you don't, then don't.
(As for dairy, well, I'm vegan for ethical reasons, so that's not really an issue I have to deal with.)
Obviously it's important to eat a healthy, balanced diet from a wide variety of sources. Getting nutrients from many different plants is good advice for anyone--Lyme or not.
Anyway, I suppose all of this is to say--do what is right for YOUR body. If something is a problem for you, don't eat it. If not, then why avoid?
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
I started gluten free only a few weeks ago. And after the babesia herx from hell last week, I decided to keep going.
I can not believe the difference. I have still been eating dairy and had already cut out sugar.
But I can't believe that I feel noticably better. It took two weeks to see it but it is more than a couple of days of better and that just didn't happen before.
I never thought of myself as gluten sensitive. I don't get pain after eating it or anything. But there is definitely something to this.
THANKS SO MUCH KEEBLER AND LYMETOO for such good info!!
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
That's great news for you, Cockapoo! Glad it worked for you.
Go to www.celiac.com for more information and lists of OK and not OK foods.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cockapoo,
That's great! It's slways good to hear when someone feels better. ---
As for myself, gluten did not always cause stomach pain, either. Sometimes, it did - terrible pain; but, sometimes, it did not. But it has always triggered seizures since getting lyme.
Even if someone sneaks it into something I eat (and foolishly forget to ask about - or thinking I can get away with it) . . . often by the 3rd day after gluten, I'd be hit with a seizure.
I can still get them without gluten - startle triggers from the slightest sound, vibration or flash. (And many lyme patients report the same thing.)
But, if I've had gluten, within 3 days, I get hit. It took a while to figure this out but, now, since I don't like brain damage, I am thrilled to be able to avoid some of the triggers that I have some control over.
Also, that "wired" sensation, as if electricity is pulsing through every fiber of my being has been lessened by avoiding gluten (and adding magnesium).
-------
The last surprise I got was when my shopper bought the wrong brand of chicken broth and I did not notice. Also be aware that ingredients can change from time to time.
Trader Joe's has a list - on their web site, to help out. Of course, many choices are pure sugar, so be careful there, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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