Celiac - Gluten Sensitive, What really is the difference?

I suffer from a number of autoimmune conditions all with links to CD. For many years I have suffered with what I was diagnosed to be IBS and have been misdiagnosed with a number of things due to the fact that I have been seronegative in blood tests. Now all of a sudden those tests are showing up strongly positive results in a number of areas.

My doctors who had already diagnosed me anyway on clinical history then told me to be GF due to an obvious intolerance and all agreed that it was not in my interest to go back on a Gluten diet just to find out if I have Celiac for sure when it was obvious from cutting it out how much better I had become. They all also agreed that it was really common to see "intolerance" in so many of their patients with that particular autoimmune disease.

I have to say I get a little irritated with the fact that people who get diagnosed with Celiac can get prescriptions to help pay for the really expensive GF food but people who are Gluten "Sensitive" because either they can't eat the gluten to get a test or the test is seronegative (you can test negative and still have Celiac) can't get a prescription.

Why are GS people any less deserving of prescriptions if their doctors say they should not be eating gluten? You also can't join Celiac UK as far as I am aware unless you are "diagnosed"!

I agree that people can't just profess to have a sensitivity and demand a prescription but surely if doctors are telling you its in your medical interest these two areas should be merged for the patients best interest?

So as asked above what really is the difference between Celiac and Gluten sensitivity or allergy? Especially if you already have antibodies raging in your system!

Am I alone in feeling a bit hard done by?

16 Replies

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  • excellent comment - was just thinking about this issue yesterday. I did manage to join the Coeliac Society, which was very useful when I first discovered I had to stay well away from gluten (even have a gf house) but only after writing them a long letter about all the things that were radically improved when I went gf.

    I was at a conference at Worcester University a few weeks ago, and gastroenterologist said gluten intolerance can actually be worse for people and it should certainly not be treated lighlty, and also that a test that is negative for coeliac one year doesn't mean that if you ran the same test a year later it wouldn't come back positive. The idea that there is a completely reliable test that is a once in a lifetime diagnostic tool is clearly not the case.

    So, no answers, but you are certainly not alone.

  • You are not alone lol,

    I am in the same place as you plus my daughter is GS too, it is expensive and i wish we could get help too?? I have an appointment with my dietician soon and im going to ask her about it because she herself said it was unfair and that they would never test me again because of the severe reaction i have to gluten, i have also got many autoimmune diseases! so as they wont test me but treat me as if i am coeliac it would be nice to have a little help, Coeliac UK were very unhelpful to me!

    Something else i have found is that people (including doctors) seem to think that when you have "ONLY" a sensitivity you can cheat abit and not be so strict, well i can tell you now that me and my daughter both get so ill if we have a cross contamination issue, it just doesnt seem fair to be treated so differently.

  • LoisParker, thats an interesting comment from the gastroenterologist, re; gluten intolerance can actually be worse for people and it should certainly not be treated lighlty. I wonder exactly what he meant by this?? worse how?

  • Just been reading your comments about coeliac uk. I had an email in June inviting me to the AGM. I remember an agenda item was to change the membership criteria. Any way just looked at their website, from 2013 the coeliac condition of membership will be changed to membership for everyone. Hope this helps.

  • Thats good news but wish they had made it with immediate effect!! :-)

  • When I asked my GP if I could be prescribed GF food she looked up the letter from the specialist and picked holes in it because although he was saying I should not eat the food he did not actually use the word Gluten unfortunately which I was told was needed in order to get a prescription!

    So I now have to chase him around and get him to write a specific letter to say that I must not eat GF food and then I can be prescribed!

    What you say Loius is what I have been told too, If you have primary CD and nothing else you can sometimes have less all round affects then if you have other autoimmune conditions because those antibodies are sensitive to so many other factors.

    Please don't think Im making light of CD by that comment Im not at all, Im just trying to make the point that intolerance's can be flared from a number of different sources and therefore just as serious.

  • I looked up to see who can get a gf prescription and was discusted to see it say that there not normally given to people who are NOT Coeliac even with life threatening gluten and wheat allergies where a risk of Anaphylaxis is possible.

    But they can prescribe an epi pen for the times you eat a sandwich and nearly die though.

    I would like to say it doesn't make sense but we know why...MONEY.

    gf bread for some reason ,though bread is a staple in many countries is considered a luxury.

    there was lots people saying what you have and having to chase people about going back and forth to hospital to get it agreed that they do indeed need it!

  • I can feel a petition coming on lol!

  • I must be one of the lucky ones. My 10 year old son had a negative test for Coeliac but ticked so many boxes that my GP suggested he go gluten free as a trial anyway, he then gave us a prescription for GF food for a month. It made such a difference to him we decided to stay GF. He is still under the care of a hospital consultant and my GP continues to provide monthly prescriptions for his food. My GPs thoughts are that if he is under the care of a hospital consultant for this condition and not been diagnosed by "some quack" (his words) then he is happy to provide prescriptions for him and treat him as Coeliac. Even better, out prescriptions are free here.

  • I am going to stick my head above the parapet here and hope that what I have to write is taken with the genuine love with which it is written.

    Whilst I agree that it is unfair that gluten sensitivity is not treated with the equal rights it deserves, when it comes to genuine health and recovery I think many of us are missing a very important point.

    Most gluten-free alternative foods are simply swapping gluten for other inflammation-causing ingredients along with an unhealthy dose of preservatives, additives, sugar, salt, etc. If we continue to rely on GF versions of bread, pasta, etc, we are only addressing half the issue. In fact, I would go as far as to say we are not addressing even half.

    When you cut out gluten, you are removing the allergen. But there is so much more work to do. Your gut is damaged and this affects every function of your body. You must work on healing the damage in order for your health to be restored. In most cases, that isn't going to happen when you are still burdening your digestion with processed, inflammation-causing ingredients.

    In my own experience, although eliminating gluten gave me a huge improvement, I never really began to recover good health until I got past the phase of simply replacing my usual foods with GF versions and moved on to replacing those processed foods such as bread and pasta with nutrient-rich, clean, whole, complete foods.

    It's difficult at first. It requires thought and planning and creativity with meals. But it can be done and after a while it can become second nature. And the health payoffs are so worth the initial work. And the extra benefit is that you don't spend money on expensive breads and pastas.

    I would urge anyone who feels it is unfair to have to pay over the odds for GF foods to turn those ways of thinking on their head, recognise that it's a great opportunity to actually be healthier than you ever were before. Sometimes life hands us what appears to be a great big haul of lemons, but I know from experience that my lemons turned out to be the best tasting lemonade ever.

  • Excellent comment. I would also like to add, ellen 29, I wouldn't worry too much about having a prescription. There have been severe cut backs in what you can have on prescription anyway. I know it depends on the area where you live, but some have been cut out altogether. It's frustrating I know, but people with other conditions requiring special diets do not get food on prescription, so you could argue, why should we? Frankly, what I can now get isn't worth getting anyway, so I'm not bothering any more. I do think it's a different situation for families who have children who are coeliac though. I think the prescription should be retained for them.

  • I also attended a lecture on Gluten Sensitivity (GS) at the Allergy Show at Olympia in April given by Dr Kate Evans from Sheffield University, she is reasearching Gluten Sensitivity and its effects and she confirmed (although research is in progress) that people with GS can suffer far worse symptoms than those who have CD. She also confirmed that if you suffer from GS and have tested negative for CD that in the future you should be retested as there is a likehood that you will go on to be shown to have CD. I also agree with Bodyof Wisdom, I also can not get prescriptions and tend to create dishes from scratch, when I do eat pre-made cakes and biscuits I do feel that the high sugar content can make me off balance. A good book I read available on amazon was the "Liver and Bowel Cleansing Diet" after following the advice I was able to tolerate Lactose after being lactose intolerant for a number of years. It explains how to heal the liver & bowel to enable it to breakdown enzymes and absorb the nutrients from foods into the body.

  • Who is the author of the book please? It isn't coming up on Amazon at all.

  • Dear Folks

    Reading the scope and breadth of Comments on this topic calls me to respond. The quandry we all find ourselves in is exactly why I put together 'A Grain of Truth'-the Gluten eSummit. As some of you may know, this event (3 weeks ago) brought together 29 of the world's experts in Celiac Disease and Non-Celiac Gluten Sensitivity. You can learn more about the event at theglutensummit.com.

    May I get to the bottom line (as us Americans tend to do)? Celiac Disease is only 1 manifestation under the umbrella of Gluten Related Disorders-it's just the one that was identified and then focused on first. Currently there are about 450+ papers published on NCGS in the medical literature compared to > 19,000 on CD. The papers on NCGS just began being published in the last few years. That is why there is such an emphasis on CD and most Specialists are as yet unfamiliar with NCGS in all of its manifestations.

    Listen to the interview with Professor Umberto Volta from Bologna, Italy and you will understand the scope of possible manifestations to NCGS.

    I am hosting the followup Webinar to 'A Grain of Truth' on January 9th. It will be available online for free from the 9th through the 14th. Here we will address the differences and more importantly what to do about them between the different Gluten Related Disorders. You can learn more (the Announcement went out today to the Attendees of the Summit) on our Facebook page theDr.com

  • And one more thing to add. Just last week, Great Britain had their first Seminar for Health Professionals on the most accurate testing available in the world for Gluten Relted Disorders (with or without CD). Cyrex Labs has come to the UK. You now can get accurate testing (false negative tests-when the tests are normal but you feel better off gluten are greatly reduced).

    'Now That You Know, Where Do You Go', the followup free Webinar will be January 9th and available the 9th through the 14th. I will talk about testing and treatment options.

    See you there

    Dr.Tom O'Bryan

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