Celiac Disease, Gluten Intolerance, or Wheat Allergy?

Celiac disease, gluten intolerance, and wheat allergy are all conditions that lead people to eat a gluten-free diet. While the diet is the same (mostly), there are differences among the conditions.

Celiac disease is an autoimmune disease. When gluten is ingested, the immune system triggers an attack on the person’s own body, specifically the small intestine. The attack causes damage to the villi lining the small intestine. The damage can be healed after switching to a gluten-free diet. Celiac disease cannot be outgrown, and a person diagnosed with it should follow a gluten-free diet for life.

Gluten intolerance does not involve the immune system and does not cause damage to the body. It is, however, very unpleasant to live with an intolerance because the digestive system is intolerant to the particular food, causing gastrointestinal symptoms.

Any allergy, including wheat allergy, is an immune response. While the body sees the trigger as a danger and produces unwanted symptoms, it does not attack itself and damage tissue as in celiac disease. That doesn’t mean allergies are not dangerous. They are certainly life threatening in people who react by going into anaphylaxic shock. Allergies are not necessarily life long. Many children outgrow food allergies.

I think it is unfortunate that many people today are going on a gluten-free diet without being tested for celiac disease. I understand their desire to do anything that will help them feel better because I have been there myself. The problem is that tests for celiac disease will not be accurate if a person has been gluten-free for a while. Going back on gluten is hard. Thankfully, I only had to do it for two weeks because I had not been gluten-free for long.

If a person has celiac disease, a formal diagnosis can be beneficial for several reasons. Here are a few of those reasons with the first one, I believe, being the most important.

 

  • The gluten-free diet is difficult to follow and knowing whether it is necessary can make a big difference in how well a person adhers to the diet. At first, as I said, a person is willing to do anything to feel better, but it gets more challenging as time goes on and they get back to feeling normal. Because of the autoimmune response, it’s important for a celiac to be very strict with his/her diet. Some people (like me) are very sensitive to gluten and have unpleasant reactions to the tiniest bit. Other people don’t have outward symptoms when they consume gluten, but an autoimmune response is still going on inside and intestinal damage is being done.
  • A formal diagnosis can help family members (even extended family) to take the disease into consideration and get tested.
  • Medical professionals may take people more seriously when they have a formal diagnosis. A diagnosis is definitely required in order to participate in any clinical trials. I have done this and would do it again despite the fact that I got sick. It was worth it for the scientific contribution it made that will hopefully benefit all celiacs.
  • Friends and family may take you more seriously, be more understanding, and be more willing to accomodate you. Personally, I have a great bunch of friends and family who go out of their way to prepare food that I can eat. Not that they wouldn’t be great about it if I didn’t have a formal diagnosis, but it helps them understand the importance of being so careful.

I’d be interested in hearing your thoughts and questions on any of these topics. If you eat gluten free, are you a celiac, intolerant, allergic or unsure?




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Comments

  1. Michelle says:

    I was tested over the summer for celiac but the test did not confirm that I have it. As far as I know, I am just gluten intolerant. I just double over in pain when I eat wheat. I am finding it very difficult to cook this way. My son has lots of food allergies and I am a vegetarian. It feels like I am in the kitchen all the time and most of what I prepare does not taste very good. I hope to try out some of your recipes soon.

  2. The Chatty Housewife says:

    I really wish that early celiac disease testing would be “advertised” more. I have been eating gluten free for a year now (and off and on for almost 4) so my test would most likely come out negative. I was told the only way to get an answer would be a colonoscopy now? No thanks! I regret not getting the simple test earlier because I do think I would feel better mentally with a true diagnosis, friends and doctors would believe me/be more supportive. I often get “oh you can eat this, it only has a tsp of flour!” or “scrape the topping off!” or “you can’t possibly be allergic to soy sauce!” It’s annoying. I know they are just trying to help, but it’s tiring.

    Anyways, to answer your question, I think I have Celiac disease, but I haven’t been tested. I have the cramps and extreme diarrhea when I eat wheat type grains/products and oats. How’s that for an answer! :)

  3. Chatty Housewife: At this time celiac diagnosis includes blood testing for antibodies and small bowel biopsy done by endoscopy. Both would be negative if you’ve been on a gluten-free diet for a while.

  4. The Chatty Housewife says:

    That is interesting to know, thanks for the reply!

  5. I know you said you went back on gluten for two weeks but how long were you off of it before that?

    I have just been off it for a week so I know I have gluten intolerance because I feel so much better but I also have fibromyalgia and I'm wondering if I also have celiac (or maybe my fibro was misdiagnosed?).

    Thanks~

  6. Terri – I think I was off gluten about a month. You should probably go back to eating a little bit of gluten each day and get tested for celiac as soon as you can. Keep me posted.

  7. Eleanor says:

    Thank you again Linda for another great tip ;) As Terri expressed above, my son definitely has something up with him and gluten and like you said Linda, I'd like to know how important it is for him to be off gluten from a health perspective.

    For example, his sisters were having a small pack of maltesers and he wanted some. Because we don't know what the deal is yet, I let him have some (and yes, they started an issue with his nose!) but wouldn't have done so if I'd known it was damaging his body.

    Will try the docs again tomorrow,
    Eleanor

  8. Retro Homemaker says:

    Thanks Linda for the information…I was tested for Celiac Disease after my sister was diagnosed with the disease. I tested negative, but I knew that I was symptomatic when I ate anything with gluten in it and I had suffered from chronic stomach pain and constipation for most of my life.
    I was gene tested and do have 2 celiac genes from both parents. (HLA-DQ 2,2) Although I realize that gene testing does not diagnosis anyone with the disease, it did give me good information that I am more at risk for the disease and also information to give to my own children.
    I did use enterolab, which many non-traditional physicians use to diagnose gluten sensitivity and I did have elevated ttg and malabsorption. Most traditional physicians dismiss enterolab's stool testing method…but for me…I needed as many reasons to gluten free as I could get my hands on.
    So again, do I have what traditional physicians call Celiac Disease..no..But I do know that gluten causes me problems, and with the double genes, and elevated stool ttg and malabsorption..I decided to go gluten free…and all those years of symptoms have totally vanished! Thanks for all you do Linda…

  9. Sherill says:

    3 Dr.s have told me that you can test positive for Celiac Disease and have it and you can test negative for it and have it so I dont think the tests are a sure diagnosis. I have had chronic diarrhea for 30 years. I had my gall bladder out 2 years ago. this winter i started having severe pain 4-6 days a month. I had both an endoscopy and colonoscopy and had esophageal ulcers but all else was normal. the i started having severe pain more often, no pain med touched it and when it became so severe 6 out of 7 days a week and i have a very high pain tolerance, my Dr. said You are getting worse and i want you to try a gluten free diet. Pain was gone for 10 days and i ate a little gravy and pain came back. Now i am on gluten free diet and occasionally i have pain and i can look back on the day before and by searching the internet i can alway find wheat somewhere. It takes just a tiny bit of wheat to cause me severe pain and no way could i could stop gluten free without severe pain.
    I just found your site and love reading your recipes and plan to try them all. I do not have a recipe for sorghum flour mix.
    Thank You

  10. Sherill ~ I'm so glad you have found an answer to your problems. There is lots of help here and at other sites. The sorghum flour mix can be found on this page, though I usually just use specific flour amounts in recipes:
    http://www.glutenfreehomemaker.com/2009/03/gluten-free-flour-mixes.html

  11. Cheryl says:

    When I was told that I was gluten intolerant from blood test the doctor explained the importance of me going on a gluten free diet. I kind of snubbed the idea at first. I have now been gluten free for almost 2 years. When I did finally decide to become gluten free, I noticed within just a few weeks the symptoms that I had were gone. A rash that I had had for years finally cleared up and the intestinal issues that I suffered from also cleared up. I am still learning and have just found a bakery nearby that is gluten free and have had my first "edible" bread recently since I went gluten free.
    I love being able to read blogs from others that are gluten free, because it helps me to learn how to implement this lifestyle to the next step.
    I just recently learned about this blog and am finding it most helpful. Thanks for all of your help in teaching me how to live a gluten-free life.

  12. Cheryl ~ You're very welcome. Thanks for sharing some of your story.

  13. Nothing will ever rid you of your wheat allergy; it’s with you for life. You can eat pizza and everything else, but you’ll have to use gluten-free products. Visit a health-food store and see how many options you have. And stop whining. It could be much, much worse. It could be cancer.

  14. I have been gluten free for a 2 months. I was diagnosed with a wheat allergy 10 years ago, but it mainly caused me stomach cramps if I ate too much of it. Thus, I continued eating wheat. I have been recently diagnosed with fibromyalgia (they thought) and IBS. I also have hypothyroidism. I finally decided to try gluten free to see if it helped since I knew I had the wheat allergy. I feel so much better.

    I have energy, no headaches, and no IBS now for a month and a half. I am a teacher and have told people I have a wheat allergy, and they have been fine. Everyone can see how much better I feel. Instead of sitting all day, I walk back and forth at my board and can go to the kids instead of them coming to me. I can walk now 3 miles a day where before my muscles would tense up and throb after one block. I did not get tested and now realize that I should have for celiac, but I don’t care. I am staying off wheat because I didn’t remember how good I could feel until I did this.

  15. Sherie says:

    My son has been GF for 3 weeks, just as a trial, to see if his many symptoms improved. He has been feeling a thousand times better, so I called his dr today. She said that the test can be negative and he still can have the problem, so she just recommended keeping him GF and dont worry about testing.
    Thats all fine, but my question is, do I worry about cross-contamination, assuming it will hurt him, or do I relax a little and watch his symptoms? I’m a little confused…

  16. CAROLINE says:

    hOW DOES hASHIMOTOS THYROIDITIS FIT? IS IT INTOLERANCE OR ALLERGY AND HOW CAREFUL DO YOU HAVE TO BE. NOT MUCH FOR IMMEDIATE SYMPTOMS SO HARD TO TELL WHAT AFFECTS YOUR BODY

  17. just found your website “The GF Homemaker” and just read all of the comments: to Sherill: thanks, the same is with me. After having my gall bladder removed 3 years ago, I was diagnosed with IBS and border-line Celiac just 2 months ago! My life is in turmoil now…but thanks soooooo much for this website! I started eating GF about 3 weeks ago, and it has changed my whole routine of life… for the better! I am usually a very strong person, but the depression state of this food “problem” IBS/celiac disease is HORRENDOUS and I have been on PAXIL for years and years…..Does the depression ever get better? and to Ket Brian: I am so glad it is not cancer! That is exactly what I told myself since the day my doctor told me of the IBS……to “cheer” myself up.

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