Topic: How do you test if gluten is an issue for you?
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I've heard some people say they don't necessarily get digestive disturbances (that's me). But I'm curious to know if gluten is adding to my neuro symptoms.
What is the best/most accurate test?
Thanks, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Interesting, I would like to know the same thing. I was tested for Celiac Disease and had allergy and food allergy testing all negative. So wonder why I am on a gluten free diet, dairy free and sugar free diet. I am not sure why but I can tell a difference in how I feel by avoiding sugar and bad carbs. On the gluten free or dairy no difference.
My test were done by my LLMD I think she used Quest, not sure how accurate.
I will be watching for some answers. Sorry I can't answer your questions.
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
Be sure to print off the lists of OK and NOT OK foods and ingredients. Gluten is found in just about EVERY processed food at the grocery store. It will not have "gluten" on the ingredient list. It may be found in all kinds of other ingredients.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I agree with Enterolab or just a trial. Make sure you eliminate every bit of gluten or it might not work, even if you have a problem with it.
My daughter had the celiac tests and was negative. Then we did Enterolab and she was positive. It helped her a lot to go gluten free. Later, I did a food allergy panel to see if there was anything else, and it said she could have wheat. Since I knew that wasn't true, it sort of ruined the whole test for me.
I don't go by those lists at celiac.com any more. I avoid anything with wheat, rye, oats, barley, malt, and natural flavoring.
Some brands like Kraft, Unilever, Sara Lee will not hide gluten in natural flavoring so I will eat those, too.
Mostly, I shop around the edges of the store for produce, meat, and dairy. Lymetoo is right, almost everything else has gluten in it.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
The answer to your question depends on who you ask...
I'll share my story so you have an idea why I say this. Grab a cup of your favorite beverage, because this is lengthy...
I've had gut problems for a long time. My Allergist finally told me one day that he'd feel really stupid if we missed an obvious thing like Celiac Disease in an attempt to figure out what was going on with me (this was before I knew anything about Lyme Disease, and had not been diagnosed with Lyme), so he ordered a Celiac blood test panel.
I had already had wheat allergy skin and blood tests (these only look for IgE-driven allergies, not the more common but more difficult to diagnose IgG-driven sensitivity or the Celiac IgA-driven autoimmune reactivity to gluten/wheat). The allergy tests for wheat (both skin prick/scratch, and RAST blood tests) were negative.
I wasn't expecting anything to show up in the Celiac blood test panel, since more than one Gastroenterologist had biopsied my small intestine looking for Celiac Disease... But I didn't know at the time that most GI doctors never take enough samples - apparently, on average, it takes 10-12 samples to fine 1 positive biopsy for Celiac... The features they look for to diagnose Celiac occur in irregular patches and thus are easily missed during the biopsy procedure. But I digress...
The Celiac blood test results came in and showed that I had an elevated IgG response to gliadin (the portion of gluten that triggers the autoimmune response in those with Celiac Disease), but all other tests in the panel were normal, including gliadin IgA, and tissue-transglutatminase (tTG) antibodies. tTG antibodies are antibodies to tTG that is formed in the gut in response to damage from gluten-related autoimmune attack on the gut wall.
So my Allergist claimed I did not have Celiac Disease and sent me home to my homemade wheat bread all satisfied that we'd ruled out a big nasty.
But that high IgG anti-gliadin test result nagged at the back of my brain and I had to go and look up what that could indicate in the absence of the other markers. And I (proverbially) opened a can of worms....
I came to find out that the IgG anti-gliadin test result was important for two scenarios:
1) If a person who is deficient in IgA antibodies has Celiac Disease, they will not be capable of generating IgA anti-gliadin antibodies, and thus the Celiac test panel would come back falsely negative for Celiac. Note also that someone with Celiac Disease who is not eating gluten at the time of the test (and for many weeks prior) will also test negative on the Celiac blood test panel...and in fact this test is done routinely by some "Celiac Disease Experts" to ensure patients are being compliant with a gluten free diet.
2) If a person does not have true Celiac Disease, but they do have an IgG-driven immune response to gliadin, then the Celiac panel will be negative. These folks are in the least understood category, because their symptoms do respond to a gluten-free diet, but they are blown off by most MD's as "IBS" or "stress" or something else because there is no official recognition of non-Celiac Gluten Sensitivity as of yet (no diagnosis code either).
So, because I have high IgA and not an IgA deficiency, I knew I fell into the second category above, and decided to go ahead and get another test that would tell me some different information.
This test I had done was based on a stool sample, collected while I was still consumming gluten. Dr. Fine, at EnteroLab (see http://www.enterolab.com/ for more info - I have no financial connections with this website, EnteroLab or Dr. Fine) has developed a Celiac/Gluten Sensitivity screening test by analyzing stool samples for antibodies generated in the gastrointestinal tract in response to dietary intake of gluten (and dairy, eggs, soy, and yeast, if you have all the tests he offers done).
Dr. Fine also has a genetic screening test that can determine whether one has any of the known Celiac genes (genes known to be associated with Celiac Disease include HLA-DQ2 and HLA-DQ8), as well as genes that are believed by Dr. Fine and a growing number of other researchers to be associated with non-Celiac Gluten Sensitivity. The website lists more details about all of this.
So off went my samples (cheek swab and stool sample). The results were interesting and most informative. Apparently, my GI tract was generating both IgG and IgA antibodies to gliadin, as well as to tTG, but these numbers had not reached significant levels to spill over into my bloodstream to show up in the blood test Celiac panel. I also had 1 Celiac gene and 1 Gluten Sensitivity gene, raising the likelihood that the significance of the elevated anti-gliadin IgG antibodies in the blood test was very meaningful. I apparently have one HLA-DQ2 gene (the more common of the 2 Celiac genes), and one HLA-DQ7 gene. And EnteroLab stated that I very likely had Gluten Sensitivity and a gluten-free diet may indeed improve my gastrointestinal symptoms.
Here-to-fore, I had lived largely on wheat, because of many food intolerances and allergies. I couldn't even eat rice without feeling ill. But after receiving those test results from EnteroLab, I decided it was time for me to do a 3 month trial gluten-free and see if I noticed anything different.
But something interesting happened...the first week I started the gluten-free diet, the menstrual migraine I'd been working on suddenly disappeared (that had never ever happened before). And then the following month's cycle came and went without any cramps or migraines...and I had a long history of severe cramps and nasty migraines going all the way back to before I even had started my cycle as a teen...
And further reading about Celiac and non-Celiac Gluten Sensitivity showed me that I needed to give my gluten-free diet more time than only 3 months, because it can take up to 8 weeks for gluten residue to be cleared from the gastrointestinal tract, and another 8+ weeks for the residual inflammation caused by the gluten to heal, for a total of at least 4 months minimum before I could possibly even begin to know for certain whether my gut symptoms were indeed from gluten or not. Also, I read that it could take upwards of 1 year or longer for gluten residue to leave the nervous system (brain, etc.), with healing taking even longer. So I decided to extend my gluten-free trial to 6 months.
At the end of those 6 months, I tried a communion wafer at church...this was a gluten-based communion wafer commonly served at many churches, and I had eaten such a communion wafer on many occasions prior without any obvious symptoms. But when I swallowed that communion wafer at the end of my 6-month gluten-free trial, it didn't take long for me to notice something change....I had diarrhea for 2 days, I had cramps and migraines with my next 2 monthly cycles, and my gut felt heavy again, like it had prior to going on the trial gluten-free diet.
That was enough to convince me that I should not eat gluten and I have been gluten-free ever since. And you know what? I really don't miss much about my old way of eating. The only thing I actually do miss is my home-made whole wheat bread. But I don't miss those cramps, migraines, and heavy gut feelings!
So really the most accurate test is a gluten-free diet for at least 6 months (12-18 months if your symptoms are primarily neurological), followed by a re-challenge to see if you notice any changes.
And that EnteroLab.com test gave me enough evidence to realize the potential value in attempting the gluten-free diet for a while.
So to recap, here are the tests available currently:
Skin prick/scratch test (looks for wheat allergy)
RAST blood test (looks for wheat allergy - an IgE-driven immune response to wheat)
Celiac Panel: Anti-Gliadin IgA antibodies (may be positive in Celiac Disease) Anti-Gliadin IgG antibodies (usually positive in Celiac or non-Celiac Gluten Sensitivity) Anti-Tissue Transglutaminase antibodies (shows intestinal damage) Total IgA (to rule out IgA deficiency; improves accuracy of Celiac Panel)
Biopsy: Tissue sample taken from the lining of the small intestine during an endoscopy procedure, for examination under a microscope to look for "flattened villi." Celiac Disease is often missed when these biopsy tissue samples are looked at, for a variety of reasons (patchy distribution of damage caused by gluten, early Celiac, poor technique, too few samples taken, etc).
Gluten-Free Dietary Trail, followed by gluten challenge: This is probably the most accurate, since there can be errors with any of the other listed tests. But this is also the most time-consuming and difficult test, because it is very hard to eliminate all sources of gluten 100%, especially if others living in your house are not gluten-free.
For more information about Celiac and non-Celiac Gluten Sensitivity, see the following:
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Oh, one more thing... The reason many LLMD's put people on gluten-free, dairy-free diets is because it is thought that the proteins in gluten and dairy can promote inflammation in the body. Those of us dealing with Lyme/coinfections do not need the extra inflammation from these dietary items because we are dealing with plenty of inflammation from the Lyme / coinfections and the die-off.
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Stomach biopsy comfirmed it for me.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yeah, thanks desertwind... I edited my post to include the biopsy in the recap of testing methods...
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
quote:Originally posted by desertwind: Stomach biopsy comfirmed it for me.
- You were lucky! They missed it on me 30 yrs ago. They also don't tell you that you should be on the equivalent of 5 slices of bread a day for 90 days before doing a biopsy.
That's why Enterolab test is a valuable test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I agree with Enterolab or just a trial. Make sure you eliminate every bit of gluten or it might not work, even if you have a problem with it.
My daughter had the celiac tests and was negative. Then we did Enterolab and she was positive. It helped her a lot to go gluten free. Later, I did a food allergy panel to see if there was anything else, and it said she could have wheat. Since I knew that wasn't true, it sort of ruined the whole test for me.
I don't go by those lists at celiac.com any more. I avoid anything with wheat, rye, oats, barley, malt, and natural flavoring.
Some brands like Kraft, Unilever, Sara Lee will not hide gluten in natural flavoring so I will eat those, too.
Mostly, I shop around the edges of the store for produce, meat, and dairy. Lymetoo is right, almost everything else has gluten in it.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
chiquita incognita
Unregistered
posted
Medical testing? For food allergies? Accurate?
I am so violently allergic to gluten it is not funny. It gives me severe, severe neuro issues, fyi and absolutely no stomach issues whatsoever.
Well let me take that back. After avoiding it for a while, when I tried it again *then* my stomach hurt.
But I am telling you, and I will repeat: The neuro issues it gives me are *severe* and could easily put me in the hospital.
Yet....I tested "not allergic" to wheat!
HAHAHAHAHA!!!!
An ND said to me that in her assessment, the food allergy tests are "not sensitive" and "not accurate".
She said that to eliminate foods for a while, then reintroduce them to test for relapse, is the most accurate food allergy test that there is.
I "second" Tutu in saying that you have to be absolutely *strict* about it. Any tiny indulgences will set you back, health-wise, if you are allergic.
If you *strictly* avoid gluten for a month or two, then reintroduce it to test for relapse, you will see whether or not you are allergic to it.
And see how your health situation responds as you avoid it. That may be just as indicative as any relapse symptoms which you might experience later on.
I wish you well with this, and success and much improvement along the way!
Xanthan gum is found in most commercial gluten-free baked goods.
It's bad news!
I researched it on Pubmed and found one study (Years ago, and cannot find the link now, sorry) in which dogs were fed xanthan gum for a period of months, and their livers were enlarged.
I don't recall how many months this study was done, or the dosages, but do recall that the dosages were high.
Apparently xanthan gum is used to mix and harden cement.
No wonder their livers were enlarged!
It is no doubt in small amounts in foods, but I still think that caution is advised. I think particularly those of us with lyme are often inclined to react to many things in foods that other people might not, in a similar way that chemically sensitive people do.
I have been baking my own gluten-free products, using extra eggs to hold the batter together, to replace any gums.
I also recall reading somewhere that dietary gums can contribute to certain forms of cancer.
Again I read this years ago and no longer have the links, sorry folks.
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I can attest to the fact that gluten can and does cause neurological problems.
My daughter always acted sick as a baby when I would give her wheat. I thought she had a wheat allergy. I didn't even know what gluten was at the time.
When she was four, they did allergy testing on her and the doctor said that she didn't have a wheat allergy. He said to let her have all the wheat she wanted.
It didn't take long for the discipline problems to start. My gut told me it was the wheat causing the problem but I listened to the doctor instead.
That was a big mistake!!
Since she was finally diagnosed with LD she has been gluten free. If she has any gluten at all, she feels horrible.
-------------------- 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
| IP: Logged |
If I eat gluten, my inflammation gets worse and my nerves get more inflamed, causing more twitching and spasming. Also my hands and feet will become visibly slightly swollen, so I can no longer see blood vessels and bones thru the skin.
The bad foods for me are gluten, dairy, nightshdes and now peanuts. My food sensitivities have grown in the last 2 years and I believe them to be related to antibiotics.
I do not react to trace amounts of bad foods. I react slightly to one exposure, and the inflammation builds with repeated exposures. Each exposure has effects that last for around 2 days.
There is a delay in symptom onset that depends on which bad stuff is consumed. It took a real long time to figure out this problem and it is still a work in progress.
Posts: 252 | From NJ USA | Registered: Mar 2004
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
dsiebenh,
You might want to consider looking into treatment for Leaky Gut... Gluten-free eating is part of this, but also there are other things that may need to be done. Probiotics, L-Glutamine (if no neuro. Lyme symptoms), etc. - ask your doctor or a Naturopathic physician about this if you are interested in slowing the progression of the food allergies/intolerances.
Also be aware that Lyme itself can cause increased food allergies/intolerances - this was my case, as I was not on abx until 2009, but had already developed many food allergies prior to that...and I believe Lyme to be a major player in this.
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Wow. Interesting reading. Thanks for sharing. It's sad that common foods are a poison to some these days.
I'm going to have to look into this for my own health issues. I've never been one to have food allergies but I don't really know. Does anyone feel these problems may be due to pesticides or genetically modified crops & not the actual wheat?
I wonder if Asian people who eat mainly rice become rice intolerant? Historically, us Westerners have had a more wheat based diet.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Here's my personal take: many (good) docs admit that the testing for gluten intolerance is very insensitive.
The only way I discovered what the cause of most of my GI issues were was to stop eating gluten. Two weeks into it I was truly AMAZED. I could eat again!! Have been GF since.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
There's a book about gluten sensitivity and lyme disease. It's on Amazon: http://tinyurl.com/3l2ty6c
As Razzle says, the diet reduces inflammation. On the gut-level, this is especially important because we need to process nutrients right and also the stomach plays a role in GH release.
The author of the book claims lymies are gluten sensitive at times even if they do not have genuine celiac disease.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
I echo everyone who says to do the strict diet. My Lyme seemed to coincide with a sudden onset of gluten intolerance. My biopsies were "inconclusive." The gastro said just do the diet.
If gluten is your only limitation, or even adding in a dairy restriction, there are many resources available online.
I have a great iPod app--Is That Gluten Free? I use it at the grocery store, as it includes ingredients, not just brands.
Posts: 447 | From Vermont | Registered: Jan 2011
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Thanks, friends, for sharing all this info. Wow, there's more to it than I realized. I thought if you didn't have gut reactions to it you were scott free. Guess not.
It's quite a challenge to figure out what's triggering the inflammation, thus the pain.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Tammy, when you did the Allergie Immun test, within the first bottle that you received were the corrections of the wheat/gluten/corn/soy dysregulations. And the were thereby eliminated.
Since you probably are not quite finished with the therapy, if I remember correctly, there may be some chemicals that have not been corrected yet by subsequent drops that could be involved in the growing or storing of the grain. But normally if you had a celiac or wheat/gluten allergy, it was taken care of with the first little bottle you received.
My son did the Allergie Immun treatment and had always thought wheat etc was a problem. This was not the case, they could not find it, but what he thought caused him problems turned out to be one of the 80,000 chemicals that we are bombarded with. When that was done, problems that he had (stuffy from waist to top of head) also was gone. A pretty neat treatment with 15 drops of "informed" water. Energy medicine at its best.
My husband could not regulate/was allergic to most toxic metals (mercury, lead, etc.) and could not release it until he did the Allergie Immun therapy.
So check the first 16 page test results you received. All that appeared as positive allergies aka dysregulations was corrected then with the first bottle you received and you should start releasing the toxins, healing the leaky gut, etc. I think you told that you noticed some effects with the first bottle.
The therapy also corrects inherited allergies -- most children born today have problems.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Yes, do have a look at your AI results. If wheat has a red x beside it, your body thinks it's the enemy.
Keep in mind that most chickens and cows are fed wheat and corn so it's everywhere.
At the height of being ill, I could not tolerate either of those things. I continued to dabble with them throughout AI and after about 5-6 rounds (maybe less), they caused no problem what so ever.
The error is corrected right away but it can take some time for the gut to heal.
Posts: 1129 | From Maine | Registered: Feb 2008
| IP: Logged |
posted
I have mentioned Leaky Gut to the doc; he is aware it is an issue but as of yet has offered no specific remedy, other than the current biofilm attack strategy, which seems to help.
Posts: 252 | From NJ USA | Registered: Mar 2004
| 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!
![[lol]](graemlins/lol.gif)
Printer-friendly view of this topic