I thought I would share the results from Luke’s recent gluten sensitivity and gene panel test that I ordered through Enterolab. I realize there is some debate on the validity of these tests since Dr. Fine’s research hasn’t undergone the peer review process. Either which way, I think it is a useful tool that can help people gain valuable insight about their health.
I had the gi-normous honor of speaking with one of my heroes on the phone last night, Dr. Ron Hoggan, Ed.D., co-author of Dangerous Grains,* and Editor of the Journal of Gluten Sensitivity. I asked Ron his opinion on the following Enterolab results for Luke, and while he confirmed that Dr. Fine’s work has not undergone the rigors of the peer review process; he did point out Dr. Michael N. Marsh’s scientific research on the rectal challenge for determining gluten sensitivity (which I had read about in Dangerous Grains, but have never been told about by my physicians).
For more scientific articles on the rectal challenge for determining gluten sensitivity:
Observations of the Time-Course of the Inflammatory Response of Rectal Mucosa to Gliadin Challenge in Gluten-Sensitive Subjects A. Ensari, A. Ager, M. N. Marsh, S. Morgan and K. Moriarty
Studies of Intestinal Lymphoid Tissue. XII. Epithelial Lymphocyte and Mucosal Responses to Rectal Gluten Challenge in Celiac Sprue. Loft DE, Marsh MN, Sandle GI, Crowe PT, Garner V, Gordon D, Baker R. PMID: 2721877
In case you are unfamiliar, Dr. Michael N. Marsh is the world renowned celiac researcher behind Marsh Classification. For an easy-to-read and understand article about the Marsh Classification, please read Making Sense of Marsh by Sonia S. Kupfer, M.D., of The University of Chicago Celiac Disease Center. See the Journal of Clinical Pathology for more scientific articles.
The following are Luke’s test results from Enterolab, I will highlight key points in red:
Date: 7/22/2010
Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 37 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 8 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 12 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0602
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)
Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.
Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.
Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: American Red Cross
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab
Interesting! While Luke does not carry one of the known genes for celiac disease, he does have a double copy of the genes for gluten sensitivity.
I was a bit perplexed by the positive Fecal Anti-gliadin IgA, seeing that we are a gluten-free family. Dr. Hoggan indicated that Luke may be part of the population of gluten sensitive people who react to oats, even gluten-free oats. So, out go the oats!
I also asked Dr. Hoggan what it means exactly for Luke that he has non-celiac gluten sensitivity. Is it to be taken as seriously as celiac disease (YES!)? If so, how do I get his school to take his dietary restrictions as seriously as Sam’s celiac disease (for which I was able to get a written note from his doctor)?
Ron sent me the following PubMed abstract and told me to print it out and take it to Luke’s pediatrician, who should have no problem writing a letter for Luke’s school, based on his positive test for gluten sensitivity and the serious information in the following article:
Malignancy and Mortality in a Population-Based Cohort of Patients with Coeliac Disease or “Gluten Sensitivity.” PMID: 17206762
Before I go on, I must take a second and gush over Dr. Ron Hoggan. Not only is he a dedicated advocate, educator and researcher in the field of gluten sensitivity; he is one of the KINDEST human beings I have ever “met.” He has a great laugh and I even found myself “speaking Canadian” after getting off the phone with him (I have a good Minnesotan accent too). 😉 To take time out of his busy schedule to talk to little ole me, couldn’t say more about that man’s character. I just love him and I almost told him so (apparently, I am not the only one who feels this way either, Ms. Shirley from GFE has actually told Ron she loved him after her similar experience with him, LOL!).
This is a personal blog, not a medical journal, so gushing is allowed from time to time! 😀
Luke is also mildly reactive to casein, a protein found in dairy (Luke has tested negative for a dairy allergy in the past via the skin prick test and RAST test), but I have recently learned there are pitfalls with those tests as well, and they only measure IgE responses to foods, not IgA and IgG.
Since taking Luke off of dairy completely a couple of months ago, his eczema is almost non-existent!
Want to know what Ron told me that almost knocked me off my chair? Casein can cause enteropathy (villous atrophy)! I am sure there are many people that already know that, but I sure didn’t!
Check out this article by John Libonati on Gluten Free Works: Bovine Beta Casein Enteropathy Causes Villous Atrophy and Anemia.
More fascinating reads:
Is Celiac Disease (Gluten Sensitivity) a Pre-Malignant Disorder? by Dr. Michael N. Marsh
Dr. Ron Hoggan, Ed.D., has a new book out, written with Scott Adams, Founder of Celiac.com, called Cereal Killers: Celiac Disease and Gluten-Free A to Z. I received my copy of Cereal Killers in the mail the other day, and while I have only read a few pages thus far (getting ready to go on vacation tomorrow), I will say this: order a copy! 😉
Shirley over at GFE has a comprehensive list of Dr. Hoggan’s educational publications on gluten sensitivity. I highly encourage you to check it out.
Did you find any information in this post that was “news to you,” like I did? I would love to read your thoughts! 😀
And welcome to my blog!
Whether you're here looking for advice on how to go gluten free (with delicious kid-approved recipes of course!), or to read some of the latest medical research on celiac disease and non-celiac gluten sensitivity...or even to read about one woman's rise from the depths of gluten-free despair to a place of downright enthusiasm, it makes no matter. The point is, you are here now so let's have some fun!
The oats interpretation intrigues me. I also react to oats (even gluten free ones) and it is my understanding that although some GF sensitive/celiac peeps can tolerate it – the safe daily consumption is only 50-70g of pure uncontaminated oats – anything above that risks damage.
Casein reeks so much havoc here too – with my youngest daughter and myself – i have to worry about even the smallest amounts (like in whey) or a reaction will occur. I honestly thing gluten & casein are not 'safe' for anyone – let alone people who are already intestinaly compromised.
Speaking Canadian – hehe – we don't have an accent do we, eh?
It does make me wonder about oats, especially since I don't "feel" a reaction, scary to think what's going on internally that I don't know about. A friend on Twitter also mentioned the possibility of cross contamination from other gluten-free grains, especially after Tricia Thompson's report came out. I used to use Quaker brand corn meal, and have tossed it for a brand labeled gluten-free, I have been doing a lot of that recently.
What kind of reaction does your daughter get from casein?
Okay, first, I didn't know about the casein causing the atrophy. OMG! I asked about this when Jon was diagnosed and was told only Celiac. I know Jon is sensitive to gluten, as he gets violently ill when he eats any trace of gluten, but eats dairy just fine. I wonder what a repeat endoscopy would show? Though I don't think that undergoing one just for my knowledge satisfaction is a good idea since he is thriving.
I love Dangerous Grains! I am thrilled you got to speak with Ron (BTW, can we call him that or should we call him Dr. Hoggan)! I can't wait to get and read his new book. You know me….as much knowledge as I can handle is the way I roll.
Do you think your Ped will be okay with what Ron suggested? I would hope so. If not, time for a new Ped.
Thanks for sharing his results! You just reminded me that I need to get both kids in for follow up – Jon to see how his bloodwork is and Hannah to be retested. She does have one of the genes associated with Celiac.
Kim
Kim,
That's what I said, OMG!!!
I asked Ron (and yes, he is okay with us calling him that) if I should go off dairy and he recommended getting an ELISA test run for casein first.
Definitely get a copy of Cereal Killers, it is a compilation with many different contributors, including Danna Korn (I love her too, she is hysterical!).
I do think my ped. will be okay writing a letter for Luke, he is a great, forward-thinking Dr. (MD) and when Sam's GI wouldn't write a letter on his behalf (without a positive biopsy), my ped wrote it instead as he knew his positive blood test along with my positive biopsy was pretty conclusive. If not, you are darn tootin' I would find another Dr. 😉
It was my pleasure to share it, I really believe we can all learn from each other and help one another to live happier, healthier, and safer gluten-free lives. 😀
Heidi, Luke had the same gene HLA-DQ test results that I did. This is why I am so convinced that my miscarriages were linked to my gluten consumption. This is also why my children are screwed in the gluten department. Kurt actually carries BOTH of the known genes for Celiac Disease!
Luke's results are fascinating! I am so glad that you decided to share them with us. I am off to share this and your Infertility post to my followers!!
Kim, get out!!! You and Luke already have a bond, LOL!
I am anxious to get my gene test, but I am leaning toward Kimball Genetics. I want to wait and see what the hematologist says about the hemochromotosis (did I tell you that on page 26 of Cereal Killers (catchy name, eh?), Ron mentions that a significant number of celiacs also suffer from hemochromotosis??).
He wrote an article on it for the Journal (then Scott-Free Newsletter), but I am having trouble locating it online and Ron's hard drive crashed so he couldn't send it to me. I will keep digging for it though.
Fascinating stuff!
I find this so interesting. We are hoping to have our older two tested through enterolab by the end of the year. They both tested negative for Celiac, but we all know that means very little. We just found out that my husbands side of the family may have Celiac as well (doing an endoscopy next week to confirm). If that is the case we will have him tested too. How do you feel about just doing the genetic panal without the fecal test?
Tai,
The genetic panel is a good indicator for the potential of getting celiac disease or non-celiac gluten sensitivity, but it will not tell a person if they actively have a problem. One would need a blood test and/or biopsy for that (and they MUST be eating an adequate amount of gluten for accurate results). I don't know much about the rectal challenge, but it might be worth talking to a doctor about it.
That being said, my personal feeling is that if there are other biopsy-confirmed celiacs (or DH) in the family, and another family member knows they are a gene carrier, then they should seriously consider going gluten-free, before they get really sick with non-reversible chronic conditions and diseases (like I now have!). I would also go further and say that if a person carries the gene for non-celiac gluten sensitivity, then they should give it some serious consideration too. But that is just my opinion. 😉
Celiac Disease is the only disease that I can think of where the medical establishment actually wants you to get really sick before giving you an "official diagnosis."
Do they recommend people with high blood sugar to keep eating sweets until they have diabetes?
Do they recommend people with high cholesterol to keep eating fried foods until they have a heart attack?
How's that for some "food for thought?" 😀
More great info. I reacted to oats and haven't had them since. But I've been giving them to the kids. I really need to get the kids tested. Also need to get to your recommended reading.
Another post that's a powerhouse of information, Heidi! Thanks so much for it and for all your gfe mentions (you're the best that way!). I'll share this info with my support group and readers, too. 🙂
You said that Luke is mildy reactive to casein. Are you basing that on that fact that his number was low on the Enterolab test? Historically, Enterolab has cautioned folks against using the numbers to mean "mild" or "major" reactive, so to speak. As far as the gluten sensitivity test, my doctor does believe the higher the number the more intestinal damage, but she doesn't believe that the lower numbers are less serious. Just different. For instance, my son scored 18 on the gluten sensitivity test. She feels like his issues are just as serious as mine with a whopping high number, but that his might be more of the non-intestinal nature. And, that was true … he had a learning disability, migraines, mood swings, etc.; whereas my major complaints were intestinal. So glad that you discussed it all with Ron and have a follow-up plan. Yes, he told me to call him Ron from the beginning. Somehow I missed his new book coming out. Must get that immediately!
xoxo,
Shirley
What a funny week to read about your Enterolab results… just got mine back this week too. Looks like I will be going Gluten, Dairy, Soy, Egg and Yeast Free… WTH. 🙂
Glad you got some answers and had a great doctor experience. Doctors who believe and support this diet change make all of the difference!
Great post. Glad you posted this info! I really need to dig into Ron's book. I did the Enterolab tests long before I went GF (July 2006). I was on a trial GF diet at the time (for about 3-4 weeks before the test) and I came back not showing an active response to gluten or dairy. However, I did end up with nearly identical genes to your Luke! I have
HLA-DQB1 Molecular analysis, Allele 1 0603
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)
Which is interesting – my brother, sister, and dad are all gluten intolerant. My dad is a diagnosed celiac. He has one of these DQ1 genes – my mom has the other – so would it mean his other gene HAS to be DQ2 or DQ8? The medical community believes that in order to have celiac, you must have one of those two genes.
This is partially why it took me so long to try to go gluten-free again. I didn't show much of a reason to. Until I got sicker – the whole fatigue, recurrent infections, heartburn so bad that I couldn't kill it with Prilosec, on top of my usual IBS stuff. Gluten-free diet alleviated all but the last symptom, and alleviated that to some degree. When I brought my Enterolab results to my gastroenterologist last summer, he said I was the first one he saw that DIDN'T test positive. So apparently I'm a weirdo! He also told me that there was no way I'd have celiac, but if I felt better off gluten, then to go ahead and continue the diet.
Hi, thanks for such a detailed and interesting post. Our son has a wheat intolerance and we've been searching for more answers for about a year. We've hadn't taken the Entero test yet b/c of cost and not knowing what to ask so this is really helpful.
Our son seems to react to the GF oats, too, and we are about to test him at home again. Thanks again for sharing so much info and for all the links.
Heidi
Maybe I missed this someplace, but do you have to do a gluten challenge in order to get the results (ie- be actively eating gluten) ? Also, gulp… what is the cost for the testing and what does it involve? Maybe there is a link…?
Thanks 🙂
Chickiepea,
Yes and no. You need to be eating gluten in order to get the most accurate results from the celiac panel blood test and the biopsy. This is why I strongly encourage people to at least get the blood test before going gluten-free. This serves a few purposes. If the blood test comes back positive for anti-tTG antibodies, then in my (non-medically trained) opinion, that is enough to diagnose celiac disease (there are some serious flaws with the biopsy, you can read more on my experience with that here).
Celiac Disease is hereditary (so you will want to encourage your family to be tested if you receive a positive diagnosis) and it requires a strict gluten-free diet for life. There is no room for doubt on this one and a positive diagnosis can do much for your peace of mind, should you ever start to question whether you really need to be on a gluten free diet a few years down the road. There is no cure for celiac disease, but it will going into "remission" (so to speak) when one strictly eliminates gluten from the diet.
Now, if you are already on the gluten-free diet and do not want to do a gluten-challenge (I wouldn't blame you!), there are two options:
1) According to Enterolab, you do not need to do a gluten-challenge (you can stay gluten-free) for the stool test: https://www.enterolab.com/StaticPages/Faq.aspx#ea…. According to the scientific research I have read, antibodies will show up first and stay longer in stool, versus blood. Enterolabs Gluten Sensitivity and Gene Panel test is $369 (which is fairly inexpensive, for both tests).
Shirley, from Gluten Free Easily, did the MyCeliacID gene test and you can read about that here.
2) The gene test is an extremely useful tool to see whether you carry one or two genes that predispose you to celiac disease and/or gluten sensitivity (which is just as serious as celiac disease).
In my humble opinion (given my atypical celiac disease, with none of the classic symptoms, like gastrointestinal complaint), I would have gone on a strict gluten-free diet YEARS ago (that whole, "if I knew then, what I know now"), if I could only prevent all of the celiac-related chronic health issues I have today.
Personally, I don't think gluten is good for the majority of the population, but I will save that for a future blog post. 😉
Please let me know who it goes for you and if you have anymore questions, you can always email me at heidi AT adventuresofaglutenfreemom DOT com
((Hugs))
Heidi
Heidi,
I just came upon your website and this post and I'm extremely intrigued and love all of the information you have posted. It's a long story and I'll spare you the details :), but we are also gluten and dairy free. We had the test from Enterolab done for my son and these were his results:
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 102 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 51 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score 1658 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 35 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0302
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 8,9)
Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.
Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.
Interpretation of Fecal anti-casein (cow's milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.
Not that you care about the details…but I *am* getting to my point, I promise! 🙂 As you can see, his fecal fat score was OFF THE CHARTS. He also has the antigliadin IgA antibody and has both the celiac and non-celiac genes. So. He had been off of gluten for quite some time when we felt like we'd hit a wall. We finally narrowed it down to the "certified gluten-free" oats we'd paid an arm and a leg for, and cut those out. It worked. But I didn't know why. I am so thankful that I came across your site, because now I get it!
Our journey has been somewhat different than most on this path, mostly because we haven't had doctors involved (at first by choice!). One of the major downfalls of this is that I end up missing all of the biologic/scientific explanations. And you just provided that for me. 🙂
So, thank you!
Hi Staci!
All I can say is WOW, great detective work momma! In my non-medically trained opinion, I would definitely say your son has celiac disease, those numbers are staggering!
How long ago did you have the Enterolab test done?
Hugs,
Heidi
Let's see…the test was performed in the middle of June of 2008. By that time, we had started the diet a month before that.
Detective work is really what it was! I never set out determined to do it on my own, without a doctor. We had horrible insurance, so I was kind of forced to sleuth it out on my own.
About six months after we started the diet, we finally realized and came to accept that he would have been 100% autistic. People think we're crazy until they see the difference if he accidentally gets gluten. And now, most people have NO idea! 🙂
I definitely lean toward the Celiac diagnosis. Of course, we can't do a blood test or a biopsy now, but it doesn't really matter! Interestingly enough, last January, I received test results from Enterolab with a positive result for gluten sensitivity. I didn't do the entire panel, just the stool sample. My husband's aunt has done it as well, with the gene analysis and hers came back positive with the non-Celiac gene. So…since my son has both the Celiac and non-Celiac genes, we pretty much just assume that mine is Celiac. And we're pretty sure mine was triggered by the stress of figuring out what was going on with our son!
It's a crazy ride, but I seriously wouldn't have gotten through it without blogs and moms like you! 🙂
I agree with you, it doesn't really matter about doing the blood test or the biopsy at this point, it's quite clear that gluten and casein are harmful for your son…besides, even if you wanted to pursue the more invasive testing, the end result would be the same, no?
My oldest son had a positive celiac blood test so we went ahead and subjected him to the biopsy, but it came back negative. Initially, his GI told me to put him back on gluten until "he got more severe symptoms" then we could do the biopsy again. Thankfully, I knew better because of all the research I had done…not to mention the fact that I have celiac disease so I was painfully aware of the potential consequences should I allow him to keep eating gluten until he was so sick with full villous atrophy that we could obtain a positive biopsy (and he could possibly obtain other related health issues like type 1 diabetes, etc.). Just recently we ran the gene test on him and he was positive for one copy of DQ8 (big time validation for this mom!).
We were "only" gluten-free for a long time, but after a series of events, we discovered that both of our sons had high levels of anti-casein antibodies in their blood (but IgE dairy allergy testing came back negative for both of them). The gluten-free, casein-free diet has already had an enormous impact on their neurological well-being, especially in the area of focus. I truly would not have believed it, had I not witnessed the transformation myself, and it was enough to convince my husband and I to follow suit and kick our cheese habit to the curb, LOL!
And I agree with your assessment…it's been a very crazy ride and I too, would not have discovered all of our hidden/underlying issues had it not been for the internet and other moms sharing their personal stories with me. And for that, I am so deeply grateful. 😀
Hi Heidi,
This is my 1st time here and I am new to GF world. I have a million questions and of course need answers fast because I think my 17 yr old son my have a gluten sensitivity???? The big question is is it possible that my son has none of the stomach issues at all to include normal bowel movements and still have Celiacs??? We are treating him currently for tension headaches and his neck and upper back have been becoming increasingly more painful over the last 5 yrs. His headaches get so bad that he throws up. We have been going to a chiropractor for 6wks now and he is helping it seems but very slowly and his symptoms are all over the place now. Since the end of December he has been very fatigued missing a lot of school and he loves school and really pushes himself so when he misses school we know he is in bad shape. The Doc put him on Whey protein because he seemed weak and his teenage diet was lacking to say the least! Since he had been going to chiropractor he said his arms and legs ache. We had blood test for celiacs which came back negative. I guess my big question is have you ever talked with anyone that had none of the stomach/digestive issues but the issues they did have went away once GF diet started???? Thanks
enslaved2god,
Well, you happen to be corresponding with a celiac who's never had any of the GI symptoms associated with celiac. I'm an atypical celiac and most of my issues related to my skin (eczema, psoriasis and dermatitis herpetiformis) and brain (cluster headaches, ADD, depression, and brain fog).
As for the test your son took, do you happen to have a copy of it? You will want to take a look at it and make sure the lab checked all of the following:
Total IgA Level (if your son is IgA deficient, then the rest of the celiac tests may not be accurate)
DGP-IgG (Diamidated Gliadin Peptide – IgG)
tTG (tissue TransGlutaminase) – IgA
DPG-IgA (Diamidated Gliadin Peptide – IgA)
EMA (Endomysial Antibodies) – IgA
Even if your son does not have celiac disease, he could very well have non-celiac gluten sensitivity (a separate condition, but just as serious). Currently, the best blood tests for this are:
Anti gliadin antibody – IgG
Anti gliadin antibody – IgA
If you are considering ordering the Enterolab tests, I would definitely recommend them too, it's simple, inexpensive and you can do it yourself. There is also a brand new lab called Cyrex and they have some exciting new tests: http://www.cyrexlabs.com/CyrexTestsArrays/tabid/1… (a doctor does need to order these for you though).
Have you checked him for other food allergies/sensitivities as well?
Heidi,
Thanks so much for responding so quickly! I have to be honest, my head is spinning with information to the point to where I am almost unable to make a decision on what to do!! My son and I talked last night and he said he would try a GF diet for a week if I wanted him to but then I heard Dr. Vikki say to go for a month on a GF diet to test yourself. I am tinking about flying my son amd myself out to Dr Vikki for treatment, but I cant stop thinking this may just be tension headaches because over the last 5 yrs he has had back neck and shoulder injuries that has caused serious knots. I dont know what to think at this point.
Okay- as I sit here eating my GF pizza, sipping my (thank GOD) GF red wine, I am so grateful for this blog!!! Exactly 12 months ago I discovered that my 5-year-old son and I have a big problem with gluten (thanks to the almighty Google). Ya see, we live in Southwest Florida, where there is little awareness of Celiac or Gluten Sensitivity. In my quest to figure out why my then 4-year-old was covered in Eczema, screaming when the bath water touched him (despite two dermatologist's diagnosis and bags of icky medicine that didn't help), I discovered "WHEAT AND GLUTEN FREE" on the back of a Dessert Essence Organics Body Wash tube. This led me to my research that uncovered our gluten intolerance/sensitivity/what-ever-you-want-to-call-it. As I was reading the connection with eczema, I was astonished to read about the symptoms that I had been suffering from for 11 years (IBS, depression, itchy skin and scalp, hormone-related ailments (or so I thought) like growing a beard!, lichen sclerosis (trust me- you don't ever want this!), hair loss and bruising (malabsorption)- these were all things that I had seen MULTIPLE doctors for including endocrinologists, gynecologists, etc. I felt like I solved a mystery, all by myself at my computer at 1 o'clock in the morning. My husband thought I was nuts. Not knowing any better, I immediately took my son off gluten and got myself tested (TTG IgA). It was negative, but the lab screwed up and did not process the IgA deficiency portion of the celiac panel. I didn't know then what a big factor IgA deficiency could play in a false-negative diagnosis. After my test results were in, I decided both my son and I were non-Celiac gluten sensitive. We went gluten free and in just two weeks my son was eczema free!!! I stopped having explosive bowel attacks. My bruising stopped. My skin and scalp stopped itching (I was using Pureology shampoo before- this is very expensive shampoo- first ingredient- hydrolized wheat protein!!!) my hair stopped falling out, my heart palpitations stopped, my gums stopped bleeding, etc. etc. etc. It took about 6 months for my son's scarring to go away from his awful "eczema" sores. He is perfectly smooth and eczema free now. I recently took him to his dermatologist (had to maintain my composure there, lemme tell ya) and she was beside herself! She admitted he looked "so good" and that "we usually don't think of Celiac without gastro issues". I told her she probably should have asked me about "gastro issues" when she was biopsying my scalp for alopecia a year ago. I told her I would be back with info from Gluten Intolerance Group when I became an official branch. She just stood there with her jaw-dropped. Fast forward a year since "discovery of gluten intolerance" and I really want to do the genetic testing. Ain't no way we're going back on gluten now! Thank you so much for all the info regarding Enterolab- I will report the results when they come in.!
So it sounds like the Enterolab fecal test can provide good results, but are you saying that they aren't widely accepted because it hasn't been scientifically proven? I have one kid with a very high positive blood test, and one with a weak positive blood test, and I'd like a genetic test that can go along with these instead of an endoscopy which I don't really see any huge value in. Would you suggest Enterolab for the genetic component, since I'm not really trying to figure out if they "have" Celiac or not. Thanks for your help. I was quoted $375 today from Kimball Genetics for the cheek cell test, and that seems really high.
I feel like I am having “aha” moments every 5 seconds since “discovering” gluten sensitivity. We were seeing a gaggle of doctors trying to find out what is “wrong” with our 4 year old son….everything you can imagine from eczema to explosive tantrums to chronic stomach pain and night terrors….it has been horrible. And no one – not our family dr, not our social worker, psychologist, dermatologist, NO ONE put it together. It really is detective work. Since removing gluten from his diet 2 weeks ago we have seen a decrease in eczema, more restful sleep, better physical endurance, the disappearance of tummy pain and better mood regulation. I was more than happy to throw out “the bread” so to speak, considering the alternative was a slippery slope to an ADHD/ODD diagnosis! I wonder how many children are stuck in a nightmare where there parent’s are giving them ADHD meds and gluten at the same time 🙁 Found your blog while doing research into Enterolab and whether or not to “trust” the results. I will contact them as soon as I’m done thanking you for sharing your info. We are all on the edge of something world changing, I totally feel it. Also, didn’t know gluten sensitivity is genetic!….and my mother (who is a processed food junkie) has MS!!!! I’m going to work on her with all this great info I’m finding! Thanks again!