? Misdiagnosed Celiac?

[sjlmckee]

I was "diagnosed",celiac 1.5 yes ago. My blood tests were all positive but my egd scope was negative. It doesn't matter how careful I am with the gluten free diet I still get headaches and gas. Which were my two biggest problems. I have lost weight since going gluten-free. Down to 105 from 110. I eat like a hog when I can but a lot of times am not hungry. Mood wise I am much worse since cutting gluten. I did try organic spelt with an all organic meal. And had no problems. I am still paying on the tests from 2012 and cannot afford to go be a guinea pig.has anyone else had this?? Please help.

[Georgia-guy]

If your blood tests were positive, then you have celiac. I have seen many people say that the scope biopsy is negative, and I have seen reports say that a scope biopsy misses as many as 1 in 5 celiacs (making it 80% accurate, much less accurate than the blood work which ranges from 92%-98% I believe). What you may have going on is intolerance or sensitivity to other foods, of which I have seen the most common be soy, lactose, and night shades. Maybe you should try an elimination diet on those three while staying gluten free.

[bartfull]

Spelt is not gluten-free. Just because you seemed to have no reaction to it doesn't mean you don't have celiac.

 

Some questions:

 

Did you give up dairy? Quite a few of us have trouble with dairy, at least at first.

 

Have you been using the same toaster, teflon pans, wooden spoons or cutting boards? How about plastic containers? Do you use the same butter, mayo or other condiments that gluten eaters in you house use?

 

Have you checked all of your medications and supplements for gluten?

 

Check out the Newbie 101 thread in the coping section here for more ideas on how to avoid cross-contamination.

 

And welcome!

[nvsmom]

I agree with the others.  Many celiacs are symptom free and don't react obviously to gluten but that does not mean that it isn't damaging your body in ways that will be evident in the future.  You need to make sure you are completely gluten-free and not just mostly gluten-free. Ingesting gluten once or twice a month is enough to stop your healing and keep you sick.    And if you had more than one positive celiac test, it's a sure thing that you have celiac disease - the doctors just missed the damaged areas during the endoscopy..

 

Healing can take a long time, and not everything gets better on a gluten-free diet. I have been gluten-free for over two years but I am not 100%. There are some things that appear to be permanent damage from years of eating gluten while undiagnosed, and then some symptoms, even though they are often symptoms of celiac disease, are caused by other health issues.  I also have thyroid problems which is strongly linked to celiac disease.  Perhaps google Hashimoto's (hypothyroidism) and Grave's (hyperthyroidism) and see if any of those symptoms apply to you as your ongoing issues could be caused by something other than celiac disease - thyroid issues being a big one.

 

Have you had your nutrient levels checked?  Low levels can cause health issues and sometimes they need help in improving. Celiacs are often low in Fe, Ca, Cu, Mg, K, A, D, B12, ferritin, zinc; anemia is quite common if these are low.

 

Best wishes and welcome to the board.  I hope you are feeling better soon.