Is it esential to go through the entire blood test and biopsy process in order to assume that you have celiac disease and should make a lifelong commitment to the gluten diet? I’d like to open a dialog on that subject and publish as many of your responses as possible. I’ll start by publishing part of an e-mail that I received recently and then responding to it. Both the letter and my answer to it may cause some controversy. If you would like to join the dialogue, send me an e-mail at gfceliac@gmail.com or leave a comment at the end of this article.
First, consider this letter: “My biggest frustration is that I don’t have an “official diagnosis” of celiac, but my doctor feels I probably have it anyway since the diet is so helpful, and I do have an aunt with the diagnosis so there’s a possible genetic link. It would be a lot easier socially if I could just tell people the reason for my food restrictions is that I have celiac disease. But I know that there are many people out there in this same situation. The last approx. 10 years of my life have been a struggle to figure out what my problem is (I’m now 45), but now I think I see the light at the end of the tunnel (after being gluten free the last 4 months). I’m still not 100% sure, but this is the best I’ve felt and for the longest stretch of time.”
Here’s my response: I have an official diagnosis. My celiac disease was discovered during a biopsy for an unrelated problem and the blood tests were done later. I’m not sure what I would do if I was being diagnosed today. The main argument for having the complete test is that you can’t turn the clock. The symptoms of celiac disease only show up in people who are currently econsuming gluten. In other words, you have to make yourself sick in order to get a diagnosis. Is it worth it? Good question!
I have no problem simply telling people that I have very severe reaction to wheat, barley, and rye. I seldom go into details. Everybody understands what the word “allergy” means so I use that term freely if not scientifically. Usually I want to tell people what I can and can’t eat and then move on as quickly as possible. My doctor, my family, and a few of my closest friends know that I have an auto-immune disease.
Let’s share opinions and ideas on this subject. It is certainly an issue for every person who lives gluten free. Send me an e-mail at gfceliac@gmail.com or leave a comment at the end of this article.
Published 10/12/08
My biopsy was consistent with celiac disease but my blood test was negative. I have been on gluten free diet for two months. I am feeling better and am symptom free but I am still uncomfortable about the negative blood test. If I have another episode of violent vomiting and diarrhea I will pursue a more definite diagnosis. As long as I am symptom free I am reluctant to gluten challenge my body. What do you think?
My bf has only had the blood test and for whatever reason when he slept for 3 days after consuming a few beers at a party they felt that that a full diagnosis was not required. Now given that insurance can kick in some money for the drastic change in my non-gluten free diet and wallet, there is something to be said. But he also had a doctor that simply told him to “limit” wheat-gluten and not eliminate it. Since ridding his diet of gluten his sinus infections have stopped and his mood evened out, he’s felt better than he ever has. Putting him back on gluten would be very difficult even for a full diagnosis. For myself if I were the gluten intolerant person I’d go through the test, but Pete has no real desire to do so. So there you go, it is easier to tell people celiac especially since his mother and grandmother also have problems with wheat, and it is infinitely more difficult to tell non-informed persons that he doesn’t need an epi-pen for the wheat gluten allergy. So we tell people it is celiacs, it is not to take away from people who have gone through the test so much as to speed up understanding and limit arguing.
I do not have an answer for you, but felt I should respond anyway. I, too, have not been diagnosed officially because I do not want to make myself sick again. The dirrarhea is more than I can handle now. However, when I was in a doctor’s office once, the doctor asked me, “So what makes you think you have celiac’s disease?” It was his tone that put me off. I felt I had to have proof for him to take me seriously. Since then I have not received that tone from other doctors, but have wondered what they really think when I tell them I am. My father was diagnosed with celiac’s disease when I was in my early forties. My parents came to me and said they were convinced that I had the same thing because I had the same symtoms. After going on and off the diet four or five times I was convinced that I could not eat wheat. (I stay away from the other gluten flours but have not tested them seperately.) All the same, nobody can convince me to start eating gluten again just to prove that I am gluten intollerant. I never use to have color in my face and now I do. I use to get colds and the flu more frequently and now I’m down to only three times a year. I do not have the embarrassing gas symtoms that I didn’t know how to prevent. No one needs to tell me I can’t eat wheat. But if a doctor should ever doubt me one day, and I hope he gives me the benifit of the doubt, I just hope I won’t have to suffer for it. I think more doctors now days are becoming more aware of the disease and listening to their patients.
the question raised is definitly important to be discussed, i was diagnosed with celiac after quite much of confusion it has been a year now and sometimes i still think if i really have it. i have never been through a biopsy i had blood tests IGA was negatve and IGG positive this confusing result could not let my doctor to reach a conclusion i still kept on eating gluten which made me a real sick after another year, the second test i repeated gave both positive. after a complete gluten free diet i feel better now, but sometimes still have abdominal pains, some of the doctors says “clinical reponse of the patient is the most important it would be better to go through a biopsy” but after a complete gluten free diet for almost a year now i have to start gluten again for a correct biopsy result,, once again its the same question is it worth it?
DH’s biopsy & colonscopy is next week. The last few days of his 3 month gluten challenge have been tough, with the big “D” and breaking out in hives. Before that, he only had a “nervous stomach” and a lot of belching. He’s pushing 50, and an official diagnosis seems like a good thing. A baseline look at the state of his intestines seems like a good thing. Knowing if his gluten intolerance does or does not have an auto-immune component is a very good thing.
The tests are imperfect, and he’ll eat GFCG regardless of the outcome; but the docs will take him more seriously now.
I AM OLD NOW, AND WAS ONLY DIAGNNOSED AT AGE 47…AND AT THIS POINT IN LIFE I WOULDN’T EVEN CONSIDER TAXING MYSELF WITH GLUTEN FOR A ‘CONFIRMED’ DIAGNOSIS. ON THE OTHER HAND, IF I WERE TWENTY SOMETHING, I WOULD HAVE TO DO SO. WHY? BECAUSE IT IS A COSTLY ENDEAVOR TO GO ‘GLUTEN-FREE’, AND EXTREMELY CHALLENGING TO ACCOMPLISH. IF I WERE YOUNG AND THEREFORE MY INARDS PRESUMABLY IN BETTER CONDITION, I WOULD NEED TO KNOW FOR CERTAIN THAT I MUST TAKE THAT LIFELONG CHALLENGE. JUST MY THOUGHTS.
I recieved a negative blood test result for celiacs but my doctor did not tell me to eat wheat and I was adhereing to a gluten free diet. So I am not surprised by the negative. My test results for several other allergies also surprisingly came back negative and my doctor told me I had no allergies at all when just a few years ago my allergy panels with a different doctor yeilded extremely high test results for allergies so much so I went through allergy shots. Also as a child I frequently went into shock and had to be rushed to the er for adreneline shots for severe reactions to food allergies. So for me the negative test result is extremely frustrating. Every doctor has something different to say. I don’t need a doctor to tell me I have celiacs I have been extremely sick for years with hives, stomach problems, migraine headaches that not one doctor could find a reason for nor find anything that could relieve my symptoms. Then after going on a gluten free diet when a friend of mine who has celiacs saw my symptoms and thought they looked similiar to hers. And surprise surprise I am cured!! After being sick for years I have no problem sticking to a gluten free diet I feel great and have not had a headache or stomache ache since I no longer spend days sick in bed since I left wheat behind. And this week my Mom is being tested for celiacs since she has been sick for longer than I have with the same symptoms. I do not need a doctor or a stomach biopsy to tell my I have celiacs the proof is in the overwhelming evidence of the change that takes place when I do not eat wheat. And I have tried to eat wheat since coming off to see what happens and the result is back to several days sick in bed. Now a doctor may want the diagnosis for insurance purposes or you may have some serious health issues as a result of the damage done from having celiacs. I can somewhat understand needing a positve test result BUT……I think that with celiacs if more doctors would acknowledge a positive diagnosis from diet changes more people would find releif from this terrible disease. It is obvoius the blood test is not enough.
My husband’s blood work came back inconclusive but his biopsy showed he possibly is Celiac. His dr. told him to go GF just to see if it improve his overall health, which it did in 2 weeks. That was 2004 and he has been GF since. NHis dr did say that time he was not going to dx my husband as Celiac because of insurance. He explained, insurance companies look for these dx and sometime they would exclude paying some treatments (who knows what) because they say it relates to “preexisting condition!” So for the sake of my hubby’s future insurance policies, he said just go GF to ensure he feel healthy.
I was DXed with Multiple Sclerosis in the beginning of 2009. The gene is prominent on both sides of my family and I am the only child from the my parents. I am also the only one with MS. I have been GFCF for 2 mos and felt I had terrible withdrawals around the 2nd week..unexpected of course. I am contemplating trying gluten again maybe tomorrow. I have had blood work done but no official test. The withdrawals were so ugly I really am scared to eat it again. I have had ZERO desire to eat anything poisonous again.
NOTE: Good luck and God bless you. I suggest that you see physician as soon as possible. If I were in your shoes (and of course I am not) my first step would be to complete the celiac testing so that at least you will have the satisfaction of knowing what you are up against.