Since my last blog on this subject I have found some interesting information on the Enterolab website.
What is the difference between celiac sprue and gluten sensitivity?
Gluten sensitivity implies that a person’s immune system is intolerant of gluten in the diet and is forming antibodies or displaying some other evidence of an inflammatory reaction. When these reactions cause small intestinal damage visible on a biopsy, the syndrome has been called celiac sprue, celiac disease, or gluten sensitive enteropathy. (Nontropical sprue and idiopathic steatorrhea are other terms that have been used for this disorder in the past.) The clinical definition of celiac sprue also usually requires that there is clinical and/or pathologic improvement following a gluten-free diet.In the past, celiac sprue could only be diagnosed after somebody developed certain symptoms like diarrhea, weight loss, or growth failure in children. A biopsy would be performed and if abnormal and typical of celiac sprue, and if a gluten free diet brought resolution of diarrhea, weight gain, or growth, only then would a diagnosis of celiac sprue be made. However, recent advances in diagnostic screening tests and application of these tests to people at heightened risk or to general populations have allowed detection of celiac sprue, sometimes even before damage to villi has occurred. This latter scenario is often called gluten sensitivity.
I have heard from many people who are confused because they tested negative for celiac disease but recover on a gluten-free diet or test positive but don’t recover. I know this can be very frustrating. You may find some answers on this website that you can discuss with your physician or that will help you become more knowledgeable about your symptoms/disease.
That is great information. I wonder if you are just sensitive until your body just can’t take it anymore,and then goes into full blown disease? I don’t know. I know for me, I had terrible stomachaches, and most of the classis symptoms, but was always overweight. I thought there was no way I would have a disease that involved “malnutrition” but I was wrong. Turns out I was still low on vitamins and minerals. So werid. The human body is so facinating.
From Kathy: I agree. I think most people are confused about their symptoms and what brought celiac disease on. I hope that as it becomes more well known people will be diagnosed earlier and not have to go through the malnutrition. It makes you wonder about the people in the world who are malnourished from lack of food.
This is the same for me exactly “I know for me, I had terrible stomachaches, and most of the classic symptoms, but was always overweight.”. Whenever I looked online everyone was underweight and so it took me a while to realize I was really intolerant.
I have finally learned after a couple of years of trying to eat wheat on and off I realized my stomach aches and muscle pain were directly related to the gluten. Your post is three years old but since it is hard to find other people who are over weight and gluten intolerant I thought I would add to the post.
This is something that even doctors have a hard time understanding. The range of symptoms with celiac disease is so great that it is hard to diagnose. Thanks for your input.
My eight year old son has just been diagnosed with a wheat allergy. He has had belly cramps for about 9 months and it took this long to get him diagnosed. He tested negative for celiac disease. I am confused on a wheat free diet vs. gluten free diet. Do I need to be concerned that he is eating gluten or can I just cut out the wheat and not be concerned about gluten? I am so confused obviously! Thank you for any info you may have.
Lisa, I know how frustrating it can be. I advise that you work with your physician and/or a dietician for the best help. I have celiac disease and try to do as much research as I can but I’m not an expert. You may want to be aware that sometimes you will get a false negative result from the celiac test. I have no idea in your son’s case but you may want to ask his physician about the possibility.
Support groups are also a great resource and there are some for children with celiac disease.’
The difference between a wheat free and gluten free diet is that you must avoid barley and rye as well as wheat on the gf diet. This means that you must realize that these ingredients can be hiding and you need to do some research regarding ingredients. Barley malt syrup is in many foods that are otherwise wheat free. There are many resources available that will inform you about which foods and ingredients you must avoid. I recommend a dietician as your best first resource.
You may want to check out this website: Gluten Free MD. I met Dr. Michelle Pietzak at a conference in NYC. She gave a very helpful talk and there is some helpful information on the website.
Good luck. I hope your son is feeling better soon. If you have any more questions I will try to help you. Kathy
Look at this site…
Hi Kathy! This is an excellent site…so glad I came across it! Both my husband and I have celiac (although much improvement with the diet!). I am curious if you are from Millington NJ and if you make meals for others to purchase. I met someone in a local market here in NJ and they mentioned someone locally here in NJ who does GF meals to purchase. Please let me know, and I’m sure we’ll be visiting your site often! Allison & kevin
Hi Allison: No, I live in Idaho. Sorry. You may try finding a local support group and someone there may know of this person. Good Luck. Kathy
In response to Lisa D.’s July ’08 posting: My daughter’s Allergist referred us to a “gastro” doctor, despite her “negative” celiac test. The pediactric gastro doctor said that her test was “most probably” a false negative because about 70%-80% of gluten had already been consistently removed from her diet two years prior to her celiac test. Her doctor instructed us to continue with our nutrition practices with our daughter. She is also hypoglycemic, so our battle is a constant. I get frustrated because I want her to recognize that she needs to monitor her health…at the same time, I do not want her to develop a “poor little me” attitude. She is now 9 years of age – as such, I try to teach her the following: Protein breakfast is the best; a cashew snack prevents an anger attack; a peanut butter lunch is best because it helps our hypoglycemic brains to rest. I cannot bring my peanut jar to school, so I settle for sunflower seeds and cashews, a low-blood sugar, high-protein tool.
I just came across this message board in my search for information on Wheat Allergies or intolerance.
Regarding Lisa (posted July 2998), I suspect that our son is intolerant to Wheat. I am frustrated with our doctor and I am going to ask for a specific blood test to confirm.
My question is “What is the specific blood test is done for a wheat intolerance?” Thanks so much!
My mistake, I meant Lisa’s posting on July 8, 2008. What test was done to confirm her 8 year old son had a wheat allergy? (I strongly suspect our 5 year old son has this and want to ask for a blood test).
Thanks!
My husband was tested a few years back for a gluten intolerance which came back positive. The doctor at the time said that it was not necessary to test if it was coeliacs as the either way the steps treatment was the same i.e. a gluten free diet.
Just recently my husband went to see a specialist who claimed he could cure him of his gluten intolerance, and 2 months later he started eating food with gluten in it with no side effects. Also he just had the gluten intolerance test repeated and it came back clear.
I was just wanting comments on his situation, and whether his intolerance can come back if he eats too much food with gluten in it?
This is a question you should get an opinion from a gastroenterologist, I think. If you have Celiac disease you never get over it. In my opinion if you start eating gluten you will eventually get sick again. You should read Dr. Peter Green’s book, “Celiac Disease, A Hidden Epidemic”. There is a chance of complications such as cancer if you continue to compromise the villi in your small intestines.
As I said you should get another opinion. Possibly a concrete diagnosis of celiac disease would help with his decision. This would mean a gluten challenge. Look into the matter with another doctor.
Hi Amanda Im so curious about this specialist who cured your son. What was the treatment and who is this person? I just had a blood test that confirmed the gene for celiac disease but no antibodies showed up. Its confusing and I do not want to have an endoscopy if unnecesary. My doc claims that’s the next step but none of you have mentioned an endo. Has anyone received a confirmation w/o one? Thanks for any info!
Claudia:
You can have the genes for celiac disease but never develop the intolerance to gluten. But you may. It is a good thing to know. If you don’t have the genes you will never have celiac disease. I did have an endoscope and my villi were atrophied from celiac disease. The endoscope is called the ‘gold standard’ of celiac disease diagnosis. Do you have other symptoms? Kathy
Thanks for your site. I just received news from my doctor today that some labs that she did showed a positive for gliadin antibodies. She, of course, went on to discuss Celiacs with me. I have been GF for a month now because I have developed a nasty allergy to wheat (at least I thought it was wheat). If I inhale wheat flour when cooking, I have something akin to an anaphylactic reaction. But, since going GF, my migraines have all but disappeared, my joint pain, body pain, and skin issues have begun to clear up. My doctor doesn’t want to test me for Celiacs because the Mayo Clinic standard for the Celiac test is two months on two slices of wheat bread a day. Clearly, I can’t do that. So, I’ll be horribly ill or possible dead by the end, and any blood test that she could do wouldn’t be accurate as I’ve been GF for about a month now. So, in the end, what do gliadin antibodies presenting in the body mean? Does anyone know? Thanks.
Julie – I recommend you get the book, “Celiac Disease, A Hidden Epidemic” by Peter H.R. Green, M.D. He explains celiac disease thoroughly and possibly answer your questions. When did you start eating a gluten-free diet? was it long before the test? good luck. Kathy
Thanks for the book recommendation, Kathy. I have been GF since late August-early September. My health is greatly improved. My concern now is regarding my children. Celiacs is a genetic condition, and I do have one daughter in particular who has digestive problems. She was tested for Celiacs a year ago, but the result was negative. What I have since learned is that my IgA production is very low, and this can also be a genetic condition. It also leads to false negatives on the Celiac blood tests. So, I’m not sure where to go from here. My household is GF for the most part, and my daughter has improved.
I am also very confused and getting frustrated! Three years ago I was diagnosed with Celiac Disease. Before being diagnosed I lost a lot of weight, was sick constantly, and had all the stomach symptoms associated with celiac. It took nine months to diagnose. My Celiac Panel was negative, but the doctor tested an IGg level which came back high. I then had a biopsy done, which showed mild changes of villous blunting and inflammatory features. The doctor said I had mild to moderate celiac sprue, I went on a gluten free diet right away. Symptoms went away within a month.
I have had trouble maintaining my weight, so decided to see another doctor recently who specializes more in Celiac disease. He thought my case was weak, due to the negative celiac panel and I am not IGA deficient, so that wouldn’t be the cause of the negative panel. He ordered a genetic test for Celiac which came back negative. Now, after 3 years gluten free he said I do not have Celiac. He said it would be okay to start eating gluten again, but watch for symptoms, because it could be a wheat allergy or an intolerance to gluten. I have only been eating gluten for 5 days and have not noticed any symptoms. Do you think symptoms would come back right away? Does an intolerance cause the same damage as celiac disease? I just can’t decide what to do. I have never been tested for wheat allergy, do I need to eat gluten or wheat to have the test done? I don’t want to be sick again, but I also do not want to stay on a gluten free diet forever if it was all a mistake. What do you think?
Danielle – I’m sorry I don’t have any good answers for you. It sounds like you have a lot to work on. If it was me I think I would start by going to an allergist and getting tested for wheat/gluten andy maybe other food allergies. As far as I know, and I’m not a doctor, it can take a while for symptoms to return when you start gluten again. I would continue with a doctor because there must be something going on because you aren’t gaining weight. Good luck. Kathy
I did make an appointment to see an allergist in a few weeks. Hopefully, he will have some answers for me.
I’m interested in speaking with you about celiac disease and gluten intolerance independent of this site. I began the diet in March 2005. It changed my life for the better. Your site is quite resourceful.
confused. i did an allergy test, which showed i was negative for wheat allergy, however a persistent dermatitis condition has made my doctor suspect a gluten intolerance and has therefore put me on a GF diet. Is it possible to have a gluten intolerance, yet not be allergic to wheat?
Hi – as I understand it, allergies and intolerance are two different things. With gluten intolerance, or celiac disease, the body reacts to gluten internally. The villi in your intestines become atrophied. It can manifest as intestinal problems or skin – dermatitis herpetaformis. Check out this information from CSA. I hope this helps you. ~ Kathy
Also, check out this link: http://www.webmd.com/allergies/foods-allergy-intolerance
It is possible to being gluten intolerant but have no wheat allergy. Think of lactose intolerance. The enzyme lactase is not present in the body so the milk sugars–lactose–cannot be digested. Thus, the person is intolerant, but they are not allergic to milk. There is no immune response occurring in the body with the production of histamines when the body comes into contact with milk. But, it is possible for a person to lack lactase and be allergic to milk at the same time. They would still be classified as lactose intolerant with a co-morbid allergy. Does that make sense?
I was tested for many things along with wheat intolerance which was negative. I have no pains but look like im 6 mos pregnant. Although I tested negative when I do not eat wheat my belly goes down. So how can I not be wheat intolerant? I am also following a dairy free diet. I have been treated for many things including ibs but the meds do not help. I am very frustrated. I am losing weight everywhere but my belly.
~Sue, try another doctor. You need to find out what is going on. Check out the Gluten Intolerance Group website and see if you can find some tips. Read Dr. Green’s book. Don’t give up trying to find help from a doctor. I just had to find the right one.~
I was tested for Celiac about 15 yrs ago and was told I did not have it, tho this did not include a biopsy. I was put on a wheat free diet and symptoms resolved. I have been pretty much gluten free since. About 2 weeks ago, I introduced a little wheat into my diet. This ended up with me at the hospital with dr.’s suspecting appendicitis, which I did not have. I was told to go back to wheat free and that since a celiac test involves eating wheat, which clearly I can’t, that I should forget that part and focus on being wheat free. So is it necessary to get a diagnosis? Really?
Can someone please lead me in the right direction? I cut out gluten 3 months ago as a way to try to give my thyroid/adrenals a break. I did not really believe I had a problem. Then, last night I had half a white bread pita and within two hours I developed a crazy, extremely painful, welt/hive under my eye and congestion and goopy drippy eyes. I drank a lot of lemon water and by morning it was 97% resolved. I know it was the pita. It doesn’t seem like I have the symptoms of celiac, but how do I find out if it’s a wheat intolerace vs gluten? I’d rather not have to go fully gluten free for the rest of my life if I don’t have to. Is there any testing I can do? I’m afraid that if I could have this dramatic of a reaction to half a pita, that testing the waters myself could be potentially really dangerous.
IS this something a naturopath takes care of or a nutritionist or a GI regular MD? Thanks for any advice you can give me.
You just did a food challenge by introducing wheat even though it was unintentional. From your reaction, it seems that you do indeed have some kind of problem with wheat. The WSJ (Wall Street Journal) just published an article recently on gluten intolerance v. celiac. (Here’s the link: http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html) They interviewed gastroenterologists who specialize in celiac disease; there was an admission that the medical community’s understanding of gluten intolerance is roughly 20 years behind where it should be, but they are beginning to believe it is like a spectrum, celiac being on the extreme end. A person need not necessarily have celiac disease to have issues with gluten. You could have all the symptoms of celiac disease and not have the disease itself, or you could simply have mild gluten intolerance. You could have a wheat allergy, but an allergy is the body’s immune reaction to a protein in whatever substance is offending your body. The main protein in wheat is gluten. So, in the end, if wheat is your problem, you still can’t have gluten. Since you’ve been gluten-free for 3 months, the celiac blood test done by a doctor won’t come back with accurate results. The Mayo Clinic requires two pieces of whole wheat bread daily for two months prior to the celiac blood test. For an allergy test, your best bet is to see an allergist. If you can find a “functional internist”, an internist who does saliva testing and is open to alternative options, all the better. In the end, however, you were GF for three months, and then you introduced gluten. There was a negative response from your immune system. This means that your immune system already recognized the proteins in wheat as something needing to be attacked. Because it happened so quickly means that your body already had stored antibodies dedicated solely for wheat/gluten. Clearly, you have a problem with the proteins in wheat. The food challenge proves that. Any doctor wouldn’t argue with that. Good luck!!!
Hi
I have been told I can have gluten but wheat intolernant and possibly have IBS. I am confused and although cutting out wheat does seem to have a positive effect on reducing stomach infamation bloating, constipation, looking pregnant. I too am confused when trying to buy products wheat free. There are many gluten free products but when checking heaps of them contain wheat flower etc. Confused? I am also A type blood. Can anyone help?
I’d like to recommend “The Gluten Connection: How Gluten May Be Sabotaging Your Health” by Dr. Shari Lieberman. ($10 on Kindle – use the free cloud reader app if you don’t have a kindle!) She says: Celiacs Disease is gluten sensitivity full-blown. Case examples include a Type 1 diabetic going gluten free and no longer having “diabetes”. Ties to MANY other diseases including Coronary. There are very specific types of blood tests recommended. There is also very reliable testing that Dr. Lieberman recommends thru:
http://www.immunoscienceslab.com/ and http://www.enterolab.com/
NO BLOOD NEEDED. Because the reactions are in the digestive tract, they test from stool samples.
Let me say I learned A LOT from this book. Sort of a crash course for me.
I thought it more than worth the $10.
I started avoiding gluten (bread) bcs it made me so tired. I didn’t connect the “lichen eczema” and extra weight issues until I really focused on veggies and protein for my main meals. My sis has celiacs. When she was diagnosed 4 years ago, she started pointing me in that direction when I didn’t “feel good”. Also an uncle had wheat allergies; my dad was (over-weight) and told he was allergic to potatoes (nightshade allergies?). I’m pretty positive my mom & brother would feel sooo much better if they avoided breads as well.
I’ve been plagued w/ respiratory allergies since I was a kid – dust mites / molds / danders and skin issues as a baby linked to milk. Last year I learned about the wheat allergy when I finally found a clinic that works with Allergy Associates in Onalaska Wisconsin. Allergies are treated w/ sublingual drops. The candida yeast showed significantly higher – they will treat that as well. (Friend lost all arthritis symptoms treating that alone!)
I had the Celiac blood test 3 yrs ago. There was one part that wasn’t ‘right’ but still a negative result. (Thru Mayo Health Systems). Side note: I take B12 shots. Not sure if that is also related to these allergies.
My weight normalized just removing the obvious breads – I previously attributed all weight loss to using Virgin coconut oil (Tropical Traditions seems best).
Sorry for the Novel – hard to know what info might catch someone else’s eye and help them …