To Test Or Not To Test?

[waitingdorothea]

Long story, shortening as much as possible.

My normal (osteopathic) doctor ran an allergy test in late February that came back (in late March) positive for various allergies, including gluten. My doctor told me to "take it with a grain of salt" and sent me away. He discouraged testing for Celiacs.

I left a week and a half later for a month long business trip in another city, half-way across the country. There was no time to get a second opinion or a celiac's test. I went gluten free - my trip was extremely high stress, and frankly, I simply could not handle the symptoms on top of everything else. I didn't feel like I had a choice. Going gluten free in this manner was awful. There were several days where nothing was available for me to eat. But I felt...SO MUCH BETTER. Unbelievably. All gastro-intestinal problems gone.

Fast forward to yesterday. I had an appointment with a highly recommended celiac disease specialist - I wanted to ask some basic questions and I wanted to get information on what it would take to get a celiac test (knowing that since I'd gone off gluten, it would be tricky). THe doctor made me wait an hour and a half and gave me maybe ten minutes of his time. In that, about 5 were spent telling me what I would do next...including 3 WEEKS of 4-6 pieces of bread a day, then a blood test, and then some kind of procedure that would take me out of work for the day. I couldn't tell you what kind of procedure it was because he was talking so dang fast. He was gone before I could even ask him why I needed the test....which was one of the questions I had prepared.

So...now I have to decide what to do. While the doctor was knowledgable, I frankly don't trust him. I've been treated by some real idiots who claimed to be specialists in the past, and this guy was both arrogant and dismissive. He literally motioned me out of his office because he wanted to go home.

My questions: (I realize you can't give medical advice, but I'm curious if anyone has any suggestions or can tell me if what I was told is in line with what they have been told)

(a) why does it matter if I have celiac disease vs. an intolerance;

( has anyone done testing like this;

© is the three weeks, 4-6 pieces of bread or servings of gluten-ous stuff prior to a test in line with what others have been told; and

(d) what am I in for in these three weeks (after being basically symptom-free for two months)?

Thank you.

[Mother of Jibril]

(a) why does it matter if I have celiac disease vs. an intolerance;

( has anyone done testing like this;

[BigDogz]

Hi...and welcome to the group!

First of all, let me start by saying there ARE alternatives to the endoscopy, especially since you've already been gluten-free for 2 months. I know there are some people on this board that are dubious about Enterolabs testing, mostly because the scientist(s) behind it haven't really published any papers for peer review of their methods. But, for those of us that went gluten-free prior to "traditional" testing like you're describing, Enterolabs could give you answers without having to go back to eating gluten. Their testing methods involve sending them a stool sample in a kit they provide you with and/or doing a mouth swab genetic test to see if you carry the genes seen in Celiac Disease. The testing is expensive, around $370 for the stool and genetic testing, and some insurances won't cover it, making it an out-of-pocket expense for you. The blood and endoscopy are most certainly MORE expensive but are usually covered by insurances since they are the "traditional", time-tested and universally accepted diagnostic tests.

The next thing I have to tell you is that I went gluten free on my own for one month because my dismissive doc wouldn't even listen to me, nevermind order any testing. Within that time, I felt so much better I could have hugged everyone I met on the street! At that point, I started seeing a different doc who wanted to do the gluten challenge before ordering the testing. Although I had a DRAMATIC return of my symptoms I forced myself to continue with my new doc's wishes. By the 12th day I felt so horrible I could hardly move or function...which was probably good because the symptoms were so bad, had I been able to move, I probably would have stuck a gun in my mouth and pulled the trigger - repeatedly! What I'm getting at is this...if my experience with a gluten challenge is typical, I would not EVER recommend it to anyone. By day 12 I called the new doc, told her what was going on and told her I was done. I just couldn't do it any longer. In a nutshell her response (God bless her) was, "Well, I think your body pretty much proved the point, don't you?" She felt comfortable diagnosing celiac disease just on the strength of my response to the gluten challenge, said additional testing was unnecessary in her mind and supported my desire for a gluten-free lifestyle. I decided to go ahead with the Enterolabs testing anyway since it doesn't really matter how long I was gluten free before doing it and because I want to know what genetic markers I might be passing on to my family.

The final point I want to make is this...whether you decide to test or not, if being gluten-free makes you feel better, why not? It's certainly not going to hurt you and if you get more enjoyment out of life because of the way it makes you feel, I say "more power to you!".

[TotalKnowledge]

It seems like a certified diagnosis is some what superfluous. After all the end result will be that you stop eating gluten. Seems a contradictory concept to eat gluten, so that the doctor can tell you not to eat gluten.

I am actually extremely new to this myself. I stopped eating gluten last Friday. Three days into it I feel better than I have felt in a very long time. Since many of the replacement grains are actually more nutritious. I wouldn't think it would be detrimental regardless of weather or not you have celiac disease.

At my request my doctor has given me blood tests to check my IgA and IgG levels, but I don't have the results back yet. I am not sure it will mater much to me what the results say.

After reading extensively on all of the possible side effects of celiac disease and its related conditions I am thoroughly convinced that I have some kind of autoimmune disease. If stopping the consumption of wheat causes a cessation to all my symptoms then I don't much care what the specific label that doctors would like to place on it are. My best guess is that after years of being in and out of doctor offices I would finally get diagnosed with one or more of Hoshimotos Disease, Lupus, and or celiac disease.

If the underlying cause is my consumption of Gluten I am more than happy to rid it from my diet.

[Crayons574]

It's personal decision for everybody. Some people want to get tested so they can make it "official" either for themselves, or their family, work, or some other reason. While others are simply okay with knowing they have a problem with gluten, therefore, avoid it. I say if you ever think you will want to do the gluten challenge, now is the time do it. I say this because you are only two months into the game. If ten years down the road you decided you wanted to know for sure whether or not you were celiac, it would be much harder to do a gluten challenge then as opposed to now. I am a year into being gluten free and am about to start a gluten challenge, because I want to have an official diagnosis for myself, and I have the rest of my life to be gluten free. Your body will heal. It always does. Just follow your gut feeling. Some people feel very strongly about not doing the gluten challenge, because it is obviously a very difficult task for many to handle. You just need to figure out what is right for you. Best of luck

P.S. In the meantime, you could get a celiac genetic test to see you have been pre-disposed to the disease. It will not tell you whether or not you are celiac, but it could help point you in the right direction. (There are a few labs who do them...Enterolab, Kimball Genetics, Prometheus).

[ang1e0251]

There are some dr's that will dx based on dietary response and genetic testing. I didn't test because I wasn't financially able at the time I suspected celiac disease. By the time i could have afforded to, I was unwilling to do the challenge.

I don't really care if my dr believes my "dx" or not. I know my physical and skin response to the gluten-free diet and my reaction when glutened. That's enough for me.

Your dr's requirement of 3 weeks eating gluten seems low to me. My friend's daughter had to challenge and her gastro req'd 6 weeks. The other test he referred to was an endoscopy where they send a camara into the beginning of the small intestine and also take biopsies. The anesthesia can make working that day a challenge. He was unprofessional to blow you off in that way and I can understand why you hesitate to be treated by him.

If you decide you still want to undergo testing, you need to start eating gluten again and I would find a new dr who will listen. When we moved and I needed a new family dr, I asked and was allowed to interview the dr in advance. I did the same when searching for our first pediatrician.