Dude note: The holidays are all about giving. So I thought I’d take the 14 days after Thanksgiving and answer 14 emails I’ve received from my fellow celiacs asking for guidance. And I’d like this to be a communal effort. My advice, shocking as this may be to hear (sarcasm), may not always be the best advice. So please chime in and lend your voice.
Day 1 of 14
I hear the following all the time: “I don’t have celiac disease, but I was diagnosed with gluten sensitivity by my doctor.” The question is…is there really a valid test out there for gluten intolerance, or are people being misled and possibly scammed??
Here’s an email I just received this week from a frustrated mom who doesn’t know who to trust or where to turn:
After I listened to everything on the Gluten Free Society web site with Dr. Osborne I went to make an an appointment and Googled his office and your blog post called “I Hate Gluten free Society” came up. (Dude note: hee hee.) So naturally I read through all the post. I totally agree with you on how he charges for everything but I’m new to all of this and I have a question.
My daughter has suffered with sever eczema since birth (around 2 weeks of age) we had to wet wrap her daily and she was unable to attend school until she was in the 4th grade. She still suffers with eczema but it’s more manageable. Then last week I was just diagnosed with Hashimoto Thyroiditis. I went on the search for everything about Hashimoto and it all points to an autoimmune. When you read about autoimmune, it points to gluten sensitivity and same for eczema.
One thing that your website did not cover, or I couldn’t find it, was how do we do testing for gluten sensitivity? Dr. Osborne talked about specialized testing (all the antibodies) that your general GI doctor does not do. I was tested and came out negative and my daughter was tested for Celiac but it came out negative as well. We have removed wheat and all the other gluten foods, but not corn or rice. We have also removed dairy from our diets. I’m so confused as to what we can and cannot eat. I was going to go see Dr. Osborne as we have been to so many doctors and no one has been able to help us so far other than steroids, and now oral medication for me. Everything I read points to nutrition.
How do we get tested, and who do I believe? UGH! I would love your opinion and any advice you can give me. Thank you.
First of all, I’m really sorry to hear of your daughter’s struggles.
Secondly, Dr. Osborne sells fear. If you read through the 300+ comments on that blog post, you will see that most of what he says is pure horse-hockey.
Lastly, YES…I’m a big believer that nutrition plays an ENORMOUS role in our health.
But getting back to your question about testing for gluten-sensitivity, I hate to see people waste money, waste time and be given a diagnosis that may not be accurate, so I did a little digging. And came up…frustrated.
There are some testing methods out there that seem to be supported by some in the medical community, but others say they are not to be trusted. For example, here is NFCA’s statement on NCGS testing: “Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted.”
So here is what I say: While I’m not sure if there is an accurate testing method for gluten sensitivity, I do believe the condition exists. You say your daughter was tested for celiac and it came back negative. Was she eating gluten at the time of the test? If not, the test results will not be accurate. There is also the possibility of a false negative. Did she have the endoscopy?
My best recommendation is to find a good GI doc who has a firm knowledge of celiac disease. They may be few and far between, but they’re out there. I’m not sure where you live, but perhaps you can find a celiac in your area on my forum and find a doc that way.
And if you run into a wall, simply take your daughter off gluten for a few months. Not kinda, sorta off gluten. But 100%. If her condition improves, you may have your answer.
I would suggest checking out the Paleo Mom Blog. It still won’t help getting any kind of actual diagnosis for gluten sensitivity. But she talks in depth about using a paleo diet as treatment for autoimmune, and the science behind it and why foods are restricted.
Also look into the Autoimmune Protocol Diet (AIP) and Dr. Amy Myers. She has hashimotos and has written a book on controlling autoimmune diseases through diet not drugs. The Paleo Mom, Sarah Ballantine is another great source.
Perhaps the help of a nutritionist would also be in order. A true elimination diet will have you take away one food at a time and then add it back to find the culprit. No need to try to take everything away at once. It’ll make you a nervous wreck and cause way more anxiety about eating than necessary.
A diagnosis of gluten sensitivity only comes after everything else has been ruled out. Gluten Dude is spot on – find a knowledgeable gastroenterologist and get an endoscopy if necessary. And even if you don’t get a definitive diagnosis, nothing says you can’t stick to a gluten free diet if you find it helps the symptoms you are trying to relieve.
I had the same issues as your daughter. After 23 years and MANY specialists, I started seeing a new doctor who felt it was DH rather than eczema. There were so many different forms of information, do this, do that and Celiac was still a rather “new” idea that I had a false negative three times! After going about the testing the correct way, it came back positive without a doubt. But when it comes down to it, diagnosis or not, if cutting out gluten 100% makes you feel better and clears up the skin conditions, do it.
Hi, Dude, thanks for another great topic. Is there any chance You can possibly answer to my request? You are the first person I know about who is soooooo sensitive on gluten as me and this is great support. But the thing is my blood test didn’t confirm any celiac disease. I know, blood can be difficult to confirm but I started my gluten free diet just for try and after 3 days I couldn’t be the same person again… Never thought this is poisoning me soooo much! So I couldn’t come back to regular diet anymore and I have no othere tests confirming if I am a celiac. And this is a big issue to me where I live (Ireland) cause nobody belives me (doctors including) and so many times I had an anafilectic shock in public after being glutened, once even only from the air (bakery). And this is dangerous to my normal life as my shock is more like cardiac … Looks like narcolepsy, I loose my ability to talk, move and I am kinda fallling asleep (like collapsing) but can hear everything and feel… It takes hours sometimes to bring me back to life. Please advise me what I should do more to fight for my rights? Is there any other way to confirm my celiac/intolerance/allergy? Best regards and sorry for the long comment.
I wholeheartedly second the nutritionist recommendation, and shopping around for a GI doc who has a lot of experience with Celiac. I know that Hashimoto’s can have a lot of dietary triggers, and that personally, my mystery eczema has been treated more thoroughly by diet than by any of the creams that dermatologists tried.
That said, you could try the genetic test for Celiac for your daughter. It won’t diagnose NCGS or be a definitive ‘yes’ as to Celiac, but it’ll at least let you know if that’s a possibility. (If it is, you and she will have to decide if it’s worth going on a lot of gluten to get a valid test result, but if it’s negative, at least you’ll be able to rule it out.)
The world of autoimmune diseases is a world without a lot of clear-cut answers, sadly, but know that there are a lot of us offering moral support as you work through it!
I concur with Gluten Dude and what a lot of the commenters here have said. From what I have read there is no reliable test for gluten intolerance. A proper elimination diet seems to be the best approach for identifying food intolerances. I did it about 20 years ago to confirm whether I was dairy intolerance and discovered I also could not eat beef or peas (weird I know).
Non coeliac (celiac) gluten sensitivity is becoming more widely recognised, so you can definitely be gluten intolerant without testing positive for the disease. This page is very helpful if you think you are in that situation – https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/gluten-sensitivity/
I had 2 negative tests for celiac done by well known reputable GI doctors. One of them accused me of having an eating disorder. Then I had the genetic test and I have both genes. I have celiac no denying it. Looking back I had no idea how serious celiac is. It is not just GF and you’re fine. So even if you have not had a positive blood test be educated about how diet affects the body. Junk in, and the body develops autoimmune diseases and pain and expenses for supplements and doctors.
Trust your instincts…you know your body or your child better than any doctor.
I would eliminate corn as well. I have celiac disease and even being gluten free get weird patches on my eyelids and neck and after seeing an allergist and two derms it took an elimination diet to find it getting better off all corn products. Then I found an article where it states “A Study published in the journal Gut identified that corn gluten caused an inflammatory reaction in patients with celiac disease.” Even if she doesn’t have celiac disease, the current corn we eat in America is pretty mutated and I don’t think its good for many people.
I spent a large part of my life with constant eczema that made my life miserable. I saw allergists who told me it couldn’t have anything to do with food, and other doctors who were equally clueless. I finally found a “holistic” doctor who told me it is almost always a reaction to food, and that an elimination diet was the only way to figure it out. The tests are not accurate enough, especially if it’s some kind of food sensitivity. This was after I’d been diagnosed with celiac, but was still covered in oozing eczema rashes.
It turned out that my eczema has several triggers (my main culprits are dairy, citrus, most nightshades–tomatoes and bell peppers especially–some nuts, corn and soy, in addition to, of course, gluten). The only way to get a handle on it is to not eat out for a long time, and make everything from scratch (so you know exactly what you are eating) and work your way through an elimination diet. Start out by removing all potential triggers and add them back in slowly, one by one. I was actually surprised how clear it was which were the problem foods, once I’d taken them out and re-introduced them. It’s a lot of work, yes, and not fun. But I haven’t had so much as a flake of eczema now for over 12 years, and before — for decades — it was constant and so severe I was frequently covered in an infected, crusting oozing mess. I also no longer have an all-over itch that used to keep me up all night that was in addition to the eczema. I had to learn a new way of eating, and eating out is almost impossible, but it’s a price well worth paying to no longer have that horrible itch! There are some topical considerations, too — I also use a mild laundry soap and a mild soap in the shower — but the biggest triggers, without question, are foods. And there is no way to accurately test for them, no matter what a mainstream allergist might tell you. You have to do an elimination diet.
I have a friend who had the same experience. He was once even lectured by a doctor who told him that eczema has nothing to do with anything he was eating — “That’s New Age b.s.,” said the doctor. Then my friend discovered on his own that his major trigger was wheat. He stopped eating wheat, and his life-long eczema disappeared.
I was very lucky to have had a doctor who understands that food can be a root cause of such things, but in my experience she is an anomaly. The worst were the allergists I saw. A Chief of Allergy and Immunology at a major teaching hospital told me, long ago before I found the holistic doctor, that I “couldn’t possibly” have any food sensitivities (at the time, I not only had eczema, but a constantly swollen throat as well). If I’d listened to her, my skin would still be oozing, my throat would still be swollen and I’d still be getting no sleep.
Good luck to you.
I have been a long time subscriber and read your blogs avidly. I have never posted but felt I needed to chime in for this one. I have severe NCGS, but feel like an imposter because I’m not a true celiac. Again, never diagnosed by doctors, spent YEARS being medicated for mental disorders, diagnosed with Bi Polar, depression, anxiety, IBS, negative for celiac always. Being adopted with no idea of my history, I was always like “Don’t know” when asked. I did find my birth family and one day through the magic of facebook, found out biomom was celiac. A zillion lightbulbs went off when I looked it up. Again, no positive test for celiac. I immediately went off gluten completely for one weekend to try it and have never looked back. At that time I was losing weight, wasting away literally (I’m 5’9″ and was at 115lbs and dropping) and people accused me of anorexia. I say the lead blanket on my brain was lifted within 24hours and the storm in my guts settled down within days. I did get tested from Enterolabs (i’m not sure if legit, but it confirmed what I already knew, and added soy and dairy to the mix). Over the years I have done food intolerance testing and found citrus, pork, peanuts to be additional culprits. I always say, gluten doesn’t like to party alone….it brings a bunch of obnoxious friends along! Find a good naturopath, a good holistic doctor, or work on elimination diets. Everyone is different, and the weirdest stuff you never thought could hurt you can, but FOOD can be the culprit and most doctors are just plain ignorant when it comes to this. Today, I am a healthy 150lbs, and (sorry Dude) will admit that I lie at restaurants (the three I go to up here in Canada) and say I’m celiac so they take it seriously. The recent news articles saying Gluten Intolerance doesn’t exist never interviewed me, and I would say to them that I would not be here if I hadn’t found out what was slowly killing me. It’s real, it exists, and I am living proof. You will find the answer for your daughter, persevere and don’t give up! My son is a teenager now and all the problems he had from birth I now know were food related, (colic, constipation, acne, moods,) and while its difficult for him, at least he has the knowledge I never did.
I’m impressed, I must say. Seldom do I encounter a blog that’s
both equally educative and engaging, and without a doubt, you’ve hit
the nail on the head. The issue is something too few people are
speaking intelligently about. I’m very happy I came across this during my hunt for something regarding this.
I have also had eczema since I was a child. I always had to keep several tubes of cortisone within reach at all times because if I didn’t immediately slather it on any area of my body that started to get red and itchy it would get so bad that I’d have to go to the ER for an allergy shot. I was just diagnosed with Hashimoto’s last year after switching doctors more times than I can count. I finally found a specialist who doesn’t make me feel like its all in my head when I list off all my crazy, seemingly unrelated symptoms to people who’ve never had to deal with this before, but he’s still not proactive in trying to help me feel any better. I came across this blog just like everyone else, in search of answers that I couldn’t find anywhere else. When I told my doctor that I had gone gluten free his response was that half of his patients are gluten free and that it helped them tremendously, yet he never once recommended it. As long as the Levothyroxine I take daily for my thyroid was working, no one cared about anything else. My eczema has improved dramatically since I went gluten free. 3 years ago I’d reach a point where it was no longer safe for me to drive because I had constant motion sickness and fatigue. I am not 100% better, and am still trying to determine what else I need to eliminate from my diet, but I definitely have my life back now. It’s a great feeling.
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