Questions, Questions, Question!

[staci002]

So...I have been gluten free for 8 days now and I feel a tremendous difference! I actually wake up feeling refreshed instead of feeling like I was hit by a truck in my sleep. I have ZERO abdominal bloating, my muscles don't ache, I could go on and on!! Very exciting!

My first question is... I called my doctor to find out if he took biopsies when I had my endoscopy done and the answer was yes, although he wouldn't tell me how many. I was wondering because since my blood test came back negative and he told me I didn't have celiac based on the biopsies does that mean that I will never have intestinal damage? This doctor has been telling me all along that he can't find anything wrong with me even though I have an array of problems. He told me that I won't have intestinal damage and if I feel better not eating gluten then just don't eat it. So I asked him.."then what you are telling me is that I am sensitive or intolerant to gluten?" His response.."Could be"

My second question...Should I take supplemental vitamins? With my new way of eating I'm afraid that I won't be getting the proper vitamins and minerals that I need. If yes, what should I take or is it better to have blood tests done first to see if I'm low in anything. The last time I was tested my vitamins B & D were both really low.

My last question...What is the easiest way to explain to someone that just because I don't have a confirmed dx of celiac that I still want to be completely gluten free because I feel sooooo much better. I already got responses like..well a little bit won't hurt you or it will be okay to cheat every now and then I guess a lot of people just won't understand.

I just want to comment on how wonderful I think this website and forums are. I have found a wealth of information and I'm so grateful.

Sincerely,

Staci

[Tigercat17]

So...I have been gluten free for 8 days now and I feel a tremendous difference! I actually wake up feeling refreshed instead of feeling like I was hit by a truck in my sleep. I have ZERO abdominal bloating, my muscles don't ache, I could go on and on!! Very exciting!

My first question is... I called my doctor to find out if he took biopsies when I had my endoscopy done and the answer was yes, although he wouldn't tell me how many. I was wondering because since my blood test came back negative and he told me I didn't have celiac based on the biopsies does that mean that I will never have intestinal damage? This doctor has been telling me all along that he can't find anything wrong with me even though I have an array of problems. He told me that I won't have intestinal damage and if I feel better not eating gluten then just don't eat it. So I asked him.."then what you are telling me is that I am sensitive or intolerant to gluten?" His response.."Could be"

My second question...Should I take supplemental vitamins? With my new way of eating I'm afraid that I won't be getting the proper vitamins and minerals that I need. If yes, what should I take or is it better to have blood tests done first to see if I'm low in anything. The last time I was tested my vitamins B & D were both really low.

My last question...What is the easiest way to explain to someone that just because I don't have a confirmed dx of celiac that I still want to be completely gluten free because I feel sooooo much better. I already got responses like..well a little bit won't hurt you or it will be okay to cheat every now and then I guess a lot of people just won't understand.

I just want to comment on how wonderful I think this website and forums are. I have found a wealth of information and I'm so grateful.

Sincerely,

Staci

Hi Staci and Welcome to the forum!

I'm so glad you're feeling better! Sometimes someone can still have celiac disease and both the blood work and biopsies can be false negatives. The second time I had blood work I had a false negative, but lucky for me I had a positive for the first time and a positive biopsy. Unfortunately it's very common and the blood work for celiac is not always accurate. As for the biopsy, the intestine are 25 feet long and they only biopsy the top of the intestines (the duodenum) when they perform the upper endoscopy, so you can have intestinal damage anywhere in the intestines and the doctor might not be able to see it. With that being said, I still think you might just be gluten intolerant since you're feeling better so fast. For most of us it takes months to a year and sometimes longer.

A good multivitamin will really help you, but do your research, call the company and ask around here. Some vitamins can state they are gluten free, but have barley grass in them or maybe cross contamination from being made on the same lines as gluten products (shared lines). Just because something says it's gluten free, doesn't always mean it's completely free of gluten. Since it's something you have to take everyday, make sure they are truly gluten free. It would be a good idea to have your doctor to check your blood work for all your vitamins, so you know what other supplements you might need. And if you're low on vitamins B and D, then your doctor should be recommending you to add those supplements, but ask your doctor first.

As for your last question, I think just saying that you're gluten intolerant should be an easy way to explain to everyone. Or - even though I have celiac disease, (it really depends who I'm talking to) sometimes I will just say I have an extreme gluten allergy to someone just because it's easier for people to understand. Then I will add that I have celiac disease just to bring more awareness to the disease. And yes your right, even though you have a gluten intolerance you still can't have just a little bit of gluten. Hopefully someone with gluten intolerance can add to this too.

I hope this helps! I'm so glad you're feeling better so fast!

[kwylee]

I was wondering because since my blood test came back negative and he told me I didn't have celiac based on the biopsies does that mean that I will never have intestinal damage?

My last question...What is the easiest way to explain to someone that just because I don't have a confirmed dx of celiac that I still want to be completely gluten free because I feel sooooo much better.

First, I'm so excited for you that you discovered what was ailing you. It was a wonderful day for me too when I finally got an answer. I am non-celiac but definitely gluten sensitive, and I think a good number of people fall into this category. Removing gluten has been the best thing I've ever done for my health. No more fatigue, no more brain fog, no more light headedness, no more fear that I had a brain tumor. We're just starting to understand that gluten affects many to varying degrees, but few ever know about it. Unfortunately, doctors do not always know best here. Hopefully that will change as they see more and more patients with different experiences to share.

And I'm no physician, but I do know without doubt that if you do have intestinal damage, it will begin to heal on a strict gluten free diet. So stick with it. It's so worth it.

And here's how I explain to people about my dietary restrictions: "For years I couldn't figure out why I felt tired, dizzy and brain foggy. Well, I finally solved the mystery!" (You'll have them there). "As it turns out, I am extremely sensitive to gluten, much like a person who has a peanut allergy reacts to just a hint of peanut, I am the same with gluten. Once I removed every trace of gluten from my diet, all my symptoms began to subside."

I think that non-Celiac gluten sensitivity is much more common than we realize at this point. And I agree that the more we can educate people the better. But most of the time, those few sentences seems to placate anyone who needs to know, and I don't need to explain further.

[Mari]

You may want to look at The Gluten Syndrome Website for an overview of problems that gluten causes. When my test came back with confusing results I ordered the Genetic Marker (DNA) test and found that I had one main Celiac gene and another gene which made the celiac worse. Another test some Drs prefer is the molecular serology test offered by Prometheus Labs and I think several other labs. Drs will pay attention to these test results if you have the symptoms. This strengthened my resolve to stay gluten free for the rest of my life. I also felt better within a few days of a gluten-free diet.