Questions

[karebear74]

I have been having symptoms for a long time, I just didn't connect it to celiac because my symptoms didn't seem "typical". I was having a discussion with a friend of mine, who does have celiac, and she mentioned that it sounded like that was what I had, too. So, long story short, I went to my primary doctor and told her about some of what was going on. She said that she didn't think it was celiac, but instead probably IBS, but would send me for a consult with a GI doc to rule out other potential causes for my symptoms (bloating, horrible-smelling gas, bloating, etc.) So, last week I went to see the GI. The first thing he asked me was if my primary ran blood tests for celiac, which she did not. She did, however, draw normal labs - CBC, chemistry, blood glucose, cholesterol, etc. All of my other labs were normal... but the GI has scheduled me to have an endoscopy to test for (1) celiac and (2) H. pylori. After doing lots of reading, I am almost positive that I have celiac... my "non-typical" symptoms now seem pretty typical for celiac. I even have the restless leg, brain fog, allergy symptoms, irritability, and some other stuff that I never would have associated with the disease.

So, I have lots of questions and I'm pretty anxious to get this done and get a definitive diagnosis. I'm actually more worried at this point that they'll say I'm negative and then I'll have to go through something else to try to figure out what's going on. I've had the symptoms for longer than I can remember and I've just been dealing with it because I just didn't think that there was anything that could be done. Anyway, can you tell me...Is it normal for the rest of your lab work to come back normal? How soon after diagnosis and changing your diet did it take you to really start to feel better? How long did it take to get results back? Any advice is appreciated!!! Thanks

[lizard00]

Hi there. Welcome

My labwork was all normal. In fact, my blood tests were negative for celiac, but that's another story. I think that my vitamin D level was slightly low when they finally tested it, but that was about a year later and I had already started taking supplements.

As far as the diet change, I noticed an immediate difference. I mean, I didn't feel great right away, but I used to get almost debilitating headaches nearly everyday. When I went gluten-free, they went away almost immediately. The nausea and digestive pains were more gradual, as well as the fatigue. By about 6 months, I stopped feeling like I had to nap during the day. So, I mean, overall, it really wasn't that long. But it felt like it while I was going through it.

Hope you can get some answers.

[mushroom]

It is hard to know what blood tests are covered in the "etc." If she just did the standard blood tests, that would not include nutrient testing, testing for iron/ferritin and lots of other things that gluten intolerants tend to be low in. As a matter of good patient practice, it is a good idea to get copies of all your lab results so you can see what is going on with your health care. I would call you doc's office and ask for copies of these tests (and ask for copies of all tests in future) so you can keep your own medical file and monitor what they are doing. Sometimes results get overlooked or misinterpreted, someone forgets to call you about something and just puts it in the file... it is always good practice to monitor your health care. You have only one body to look after -- they have hundreds

[AVR1962]

In your reading you may have already learned that you could be tested now, results come back negative, test again in a year and the results could be positive. I don't know why the testing is so inaccurate but it is and even docs will tell you that it is hard to get an accurate test.

My situation got real messed up because of docs not having the proper knowledge for testing. What I can tell you is that if you have decided to follow thru on the testing, stay on gluten until all tests are complete. If you come back with negative labs, yes docs may keep searching as they did with me. However, that doesn't mean you can't go on your own and go off gluten to see if it makes a difference for you. Infact, that is what I suggest. That's how I found out. In only 10 days off gluten I knew it was part of my problem. My system was pretty tore up so I also could not tolerate dairy and a few other things.

It depends how much damage has been done as to how fast you will recover but I think you will start noticing a difference within weeks and then it is a bit aof a slow process as everything has to heal and as you are healing it is very important that your diet is that which will help repair. Certian foods could keep you from getting better, depending what you are having a reaction to.

[karebear74]

Thanks for the feedback. My endoscopy is scheduled in another week & a half. I'm more worried that they won't find anything than they will, but I will keep doing what I'm doing right now until I can get my results. After that, we'll figure out what the next steps are and go from there.