Gluten & Lyme

For those of you on gluten free diets, why did you decide to go there? Were you diagnosed with gluten sensitivity, or did you decide to try it to give your system a break? My LLMD won't test me for it but suggests I try a gluten free diet for a month to see if it helps. I'm trying to decide whether it's worth the attempt.

From what I understand the tests are unreliable. I was tested for celiac disease and it came back negative. My alternative doctor said the best test to take to find out if you're gluten sensitive is to give it up for a few weeks. If your gut feels better after stopping cookies, bread and other gluten filled products then you've got your answer.

It really isn't all that difficult to give up gluten (I did) as there's some wonderful gluten free breads, pastas and other products out there that taste pretty good without gluten. However, for those of us with lyme disease, it's best to avoid breads, cookies and all those things that can cause yeast problems. Many Lyme patients are gluten sensitive and when they stop taking gluten products their stomach improves as well as their overall health.

To learn more about celiac disease and gluten sensitivities take a look at this very excellent and informative website: http://www.celiac.com/

Gary

My reaction is a combination of things...a heavy feeling in my gut after eating, very painful menstrual cycles, and diarrhea. I didn't get the diarrhea from gluten until after going on a gluten-free diet. Unfortunately for me, I am also sensitive to gluten in the air as well, so if I visit a bakery or someone's home where they have been cooking pasta or baking with wheat flour, I also get a reaction. My first clue gluten was a problem was when my doctor ran the Celiac blood tests and they came back negative all except for the anti-Gliadin IgG. They told me it was a meaningless thing to have an elevated anti-Gliadin IgG (so then why do they run this test?? - it is not as meaningless as the doctors would have us believe...) and that wheat/gluten was not a problem for me.

A while later, I ordered the stool and genetic testing from EnteroLab.com and it came back positive for gluten sensitivity (elevated stool anti-gliadin IgA and anti-tissue transglutaminase IgA, elevated fecal fat, and 1 Celiac gene plus 1 gluten sensitivity gene). That is when I decided that the only way I would know for sure was to do a 6 month gluten-free trial, followed by a gluten challenge. I've had biopsies of my small bowel looking for Celiac, but they never found anything...unfortunately, most MD's don't take enough biopsies (average needed to diagnose Celiac is 10 biopsies; average number of biopsies taken by most MD's is 1 or 2...and the signs of Celiac in the gut are often very patchy and easily missed).

The tests for Celiac are only accurate while one is eating gluten...the stool test remains accurate up to 1 year after going gluten-free. The gene test does not depend on one's diet, so it is usually always a good indicator of one's chances of developing a problem with gluten.

Communion: My Husband and I celebrate communion using a plain potato chip and a sip of water at home instead of taking communion at church - it is way too easy for them to cross-contaminate gluten-free stuff with gluten-containing stuff and between my hypersensitivity to gluten and my Husband's severe allergy to gluten grains (and also to the grape juice), it is just not worth the risk for us.

I have heard that there is someone making a rice-based communion wafer, but I don't know what company or how to obtain this.

Take care,

Korissa said...


I've heard that the United Kingdom is working on an enzyme that will "digest" the gluten, but it's going to be a while.

My mother and mother's mother died of stomach cancer and colon cancer so my LLMD said I have another reason to stay away from gluten besides the fact that lyme inflames the digestive tract as well.

Hope they hurry with that enzyme. I love Italian bread--and want a sandwich so bad.

Actually, there's already a digestive enzyme that will "digest" gluten. Check this out:

http://www.klaire.com/S123-C180_proddetail.htm


----Plant enzymes with high DPP-IV activity hydrolyze casein, gluten, and other small peptides.
A high-potency, proprietary blend of six plant-derived enzymes, patented* SerenAid® is specifically formulated to assist in breaking down the fullest range of plant and animal proteins, including casein (milk and dairy products), gluten (wheat, rye, oats, barley, and other grains), and soy proteins.

The inclusion of Exorphinase® differentiates SerenAid® from other digestive enzyme formulas. This proprietary, high-activity enzyme blend of Peptidase and Protease with Dipeptidyl peptidase IV (DPP-IV) activity can assist in hydrolyzing small protein peptides, including casomorphins and gluteomorphins that can adversely affect the central nervous system in some individuals. The enzymes in this formulation demonstrate activity over a wide range of pH conditions (pH of 2 to 12). -----

Every once in awhile when I have a bite or two of a gluten product (which is very rare) I will take this with it and it really helps me to not get an upset stomach. Dr. Jernigan of the Hansa Center put me on this and said I could eat wheat products and take this. Like I say, it works for me!

Gary

I have a relative with Celiac Disease. If you have it, nutrition is not being absorbed and you WILL have symptoms eventually, like diabetes or seizures, to name a couple of serious ones. There is gluten in so many things you'd never guess - read EVERY label, including spices. Also, many 'gluten free' items or naturally gluten free items are produced or packaged in a facility that is NOT gluten free and they are labeled as such. Every single exposure to gluten has a cumulative effect and there is no reversal to damage done. For communion my relative bought a special "holder" that they put their specially self-purchased (rather costly) communion host into. They take it to the front of church before services start and always goes to the same person to receive it. If that person is not there, communion is skipped that day.

Antibiotics will do a real number on your stomach. My doctor also prescribed Fluconozole (generic for Diflucan) along with my antibiotics and I also take probiotics. I do ocassionally have diarreah or feel quite nauseous, but it's because I goofed up on how I took them. I have to take my antibiotics right after I eat and then space the two different kinds out and then eat a bit again with the other kind...if I forget to take them right away I'm just screwed and will feel like crap for a couple of hours.

Razzle, thanks. That explains well. So in summary you are saying that for 6 wks atleast one has to be gluten free to make the body free of gluten. Any gluten intake (however minimal) during that time frame will cause the gluten problems to come back. Oh well in that case I'll never get to 6 weeks. I ate cous cous yesterday and couldn't even get to my probiotics. oh well. This is one challenge.

The reason why I am having such a hard time understanding dietary restrictions is that cuz before lyme, I ate anything and felt perfectly fine. Now with lyme, docs are telling me stop eating all these things which is beyond my comprehension. (sugar I can understand as that feeds lyme). But gluten?

In any case, I want to ask my doc and you and everyone else, why I am being told to stay away from gluten/wheat (and specifically why in the context of lyme). Even people who non gluten senstivity are asked to stay from gluten if they have lyme. Why?

Lastly, what are some of the medications/herbs you are taking to cure yeast overgrowth. I have heard of difuclan. Should I ask my doc for this?

Gluten doesn't always cause noticeable symptoms, even in those with biopsy-proven Celiac Disease, prior to them instituting a gluten-free diet. Also, gut tissue can be badly inflammed and yet there can be no symptoms present at all. In the world of Inflammatory Bowel Disease, it is known that clinical symptoms often do not correlate well with endoscopic appearance and/or tissue biopsy results...i.e., one can have no symptoms and yet have a horribly inflammed bowel.

Reasons to avoid gluten whether or not one has Lyme:

1. The FDA approved genetically modified wheat a couple years ago. GMO's are known to have health effects but the research showing this has been suppressed in favor of the large agricultural chemical companies behind the GMO foods (food plants that are genetically modified in order to "tolerate" more pesticides).

2. Gluten causes healthy gastrointestinal tissue to become "leaky" - i.e., the gaps between cells in the lining of the intestinal mucosal barrier (the barrier protects us from absorbing bacteria, undigested food, etc., and is an important part of the body's immune system) become larger and enable absorption of things which shouldn't be present in the bloodstream. This "leakiness" of the mucosal barrier lasts upwards of 24-48 hours in those without any genetic predisposition for Celiac Disease or Gluten Sensitivity. In those with the genetic predisposition, those with other causes of gastrointestinal inflammation (inflammatory bowel, infections, etc.) and those with Lyme (because Lyme can cause gluten sensitivity), this period of increased permeability of the mucosal barrier due to gluten ingestion can last weeks.

3. Gluten (and dairy) protein promotes inflammation in the body. Any time inflammation is present in the body, the immune system is activated and put in "fight" mode, thus stressing the adrenal glands, causing blood vessels to "leak" white blood cells into the tissues, and activating a whole host of immune chemical messengers that ultimately results in healthy cells being damaged by the immune system. If one is "healthy" then this is a lot for the body to deal with. If one is sick with anything involving the immune system (which most illness does involve, even healing from an injury), then this is additional stress on the body that is unnecessary.

4. Grains that contain gluten, especially wheat, now contain more gluten percentage-wise than ever before due to cross breeding and genetic manipulation [the initial wheat that was eaten 2000 years ago only contained 1-2% gluten; today's wheat contains 20% or more gluten]. Gluten is the "glue" that enables flour-based products to trap gasses released by the action of yeast on the carbohydrates in the flour. This is good for bread-making, but our bodies lack the enzyme necessary to break down this gluten (cows and other herbivorous animals usually have more of this enzyme than we do, thus why they can eat & digest grass, etc. - what we call wheat is actually the seed from a certain type of grass).

5. A diet high in carbohydrates contributes to the development of blood sugar control issues, belly fat (known to be linked to heart disease and other health problems, per Dr. Oz ), sugar cravings, bacterial/yeast imbalance in the GI tract, etc. Wheat is high in carbohydrate content, and refined white flour products are highest in simpler sugars that definately "feed" yeast.

6. Wheat also contains phytates, which block the absorption of other nutrients. So while the FDA says wheat has B vitamins and other nutrients, some of those nutrients are bound to the phytates and thus not able to be absorbed. Also, any other foods eaten with phytates will also be susceptible to losing nutrients to those which the phytates bond to... Incidentally, legumes such as soy are also high in phytates.

Yeast:

You should discuss yeast issues with your doctor - not everyone on abx has problems if they take probiotics. That said, sometimes it is good to avoid problems in the first place - such as avoiding sugar, taking probiotics, etc.

Some substances with anti-yeast properties include: Oregano, garlic, thyme, biotin, zinc tannates, caprylic acid, etc. It may be wise to discuss the addition of one or more of these substances to your suppliment regime.

I hope this info is helpful....take care,

I think it's really important to remember to talk to your own doctor about all of this, because just like Lyme Disease, there are differing opinions on this subject too and much of it relates to how current/knowledgable the doctor is. Our whole family was offered and went to "classes" given by medical professionals to make us aware of what all Celiac's is, in case we also unknowingly have it, and also for the sake of the relative who has a biopsied confirmed case of Celiacs, along with seizure disorder and diabetes caused by undiagnosed Celiac's. This person also had several other "minor" symptoms that were incorrectly diagnosed as something else, but because they have a very good doctor who was aware of the connection between Celiac's/diabetes/seizures, they were tested. Initially everything was believed to be completely separate issues, and the other specialists they had seen made no connection - all within the same medical center.

So, very good information, Razzle, but some of it was a bit in conflict with what we were told.

Tala3,

Many people with symptoms from gluten (determined by going on a gluten-free diet, followed by a gluten challenge) do not test positive for Celiac Disease (blood and/or biopsy) but do have elevated anti-gliadin IgG antibodies in their blood. Some don't even test positive for the IgG antibodies but do improve on a gluten-free diet. These folks are the ones who have Gluten Sensitivity - maybe I should call it "non-Celiac Gluten Sensitivity?"

I was not speaking in my post solely about people with Celiac Disease, but rather anyone who falls along the spectrum of gluten-related issues. More and more research is showing that gluten affects more than the gut - Dermatitis Herpetiformis, for example, is a skin disorder that can be treated with a gluten-free diet (usually pretty successfully)...and not all with DH have gut problems or intestinal mucosal damage visable or on biopsies. There is also Gluten Ataxia, which is a neurological disorder that is caused by gluten...again, not all with this condition have damage in their gut, but they do have antibodies to nerve cells which is the cause of their ataxia, and these antibodies are triggered by gluten. Much more info is available out there about Celiac and non-Celiac versions of gluten problems...

See also:
http://jccglutenfree.googlepages.com/ (a compilation of info on Celiac and non-Celiac Gluten Sensitivity, including links to research articles, etc.)
http://www.dogtorj.com/ (a Veterinarian who has observed a link between gluten in dog food to Epilepsy in dogs)
http://www.enterolab.com/ (Dr. Fine has done research on both Celiac and non-Celiac Gluten Sensitivity)

Thanks GWB for your compliments, and supporting info on the GMO foods...

Take care,

Tala3,

Please tell me what specifically was in conflict between my post and what your doctors said? I'd like to expand my understanding of gluten issues, and learning more about what doctors say is part of that.

Also, here's another interesting link to check out about gluten issues:

http://www.patienthealthyself.info/Celiac_Disease_Article.html

Thanks,

I was dxd with Lyme in 2005. After a couple of years of on again off again antibiotics I started having stomach issues. Now I am suspecting a Celiacs like problem. I think it could have actually been CAUSED OR EXACERBATED by the use of prolonged antibiotics. Of course, I needed the medicine! But I do think it has a lot to do with my digestive issues today since it wasn't until later during the treatment that I developed gut pain. I am getting tested for Celiacs in Dec. But I already know that I can't handle any kind of gluten type bread. Does anyone else think about this possibility? I am off antibiotics now and feeling like the Lyme is gone. Still, I wait for the other shoe to drop.

KOMBUCHABABY said...
I was dxd with Lyme in 2005. After a couple of years of on again off again antibiotics I started having stomach issues. Now I am suspecting a Celiacs like problem. I think it could have actually been CAUSED OR EXACERBATED by the use of prolonged antibiotics. Of course, I needed the medicine! But I do think it has a lot to do with my digestive issues today since it wasn't until later during the treatment that I developed gut pain. I am getting tested for Celiacs in Dec. But I already know that I can't handle any kind of gluten type bread. Does anyone else think about this possibility? I am off antibiotics now and feeling like the Lyme is gone. Still, I wait for the other shoe to drop.

Hi Kombuchbaby,

Welcome to the forum!

This is a pretty old thread, so you may want to consider starting a new one to introduce yourself and ask your questions, but I will try to address the issue you brought up here.

As MoralAnimal said, extreme stress or an illness can trigger autoimmune conditions, particularly if your family is genetically inclined to develop them. Lyme is notorious for triggering autoimmune diseases and related disorders, so it's highly likely that this is the culprit in your case. I'm not a doctor, but I don't think that the antibiotics (abx) can cause you to develop celiac disease, although abx can certainly stress your body and make any sort of intestinal issue more complicated!!

Do any of your family members have celiac disease? If so, then you must have a genetic propensity for gluten intolerance. Lyme can take advantage of that propensity to trigger the autoimmune response to gliadin.

If you have celiac now, it's actually possible that you had it before you ever took abx; there are many so-called "silent" celiacs, who have no symptoms when they eat gluten. However, their intestinal villi still suffer damage so they have a greatly increased risk of developing intestinal cancer later in life.

It's actually quite common for Lymies to have gluten intolerance; a low-carb, gluten free diet of unprocessed natural foods is recommended for those with Lyme in any case, because the Lyme bacteria thrive on carbohydrates. I do best when I eat only nuts, eggs, low-starch vegetables, low-sugar fruits (berries), beef, pork, fish, poultry, game meats, etc.....foods that are as low-carb and "natural" and unprocessed as possible!

I have had celiac disease for more than 50 years, but was told it was "IBS" for most of that time. I've only been gluten free since 2008.

In any case, I wish you the best....please keep us updated on how things are going for you!

Take care,
JoAnn

Molds are one of the reasons why many are sensitive to corn and peanuts, they tend to develop a lot of mold in storage. It's hard to eliminate all molds, they're pretty much everywhere, but limiting exposure should be doable.

raw runner, if you have a list of moldy foods, please post for us to use as well!