It took me years to be diagnosed. I've been misdiagnosed with several different things and knew that there was more to it. I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on. I still felt like hell because I didn't realize that "everything" has gluten in it.... My daughter became ill back in March. I went to several different doctors trying to figure out what was causing her to be ill. Our family doctor said she had gallstones, wanted to immediately do surgery on her. I refused since she didn't fit the typical signs of a child with gallstones. I requested a pediatric surgeon and then a pediatric gi dr. The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease.... Then it clicked. I was so angry and mad at myself and my dr for not listening to my body for the past several years.
Her blood test was negative, but the biopsy was positive. She went on the gluten free diet. I then said I wanted to be formally tested. Blood test was negative, biopsy was positive and they ran the genetic screening. I am a DQ2 homozygous, cat 8. My doctor apologized to me over and over. I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2. If they start showing signs of the disease they will be tested by way of egd. Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.
So in saying all of that, fight for your test. Listen to your body, but don't stop living. Use this as a teaching tool. Help others that don't understand the disease. It'll be tough but you can do it...
Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.
Also, I know that the DQ2 is the most common one representing celiac disease.
I have low IgA-35
and my DGP Igg - 34.8 (medium to strong positive is greater than 30)
All the IgA labs were within range.
I have Hashimoto's as well.
My vitamin D level is 23.
I guess I'm wondering how likely it is that I have celiac disease. The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high. I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office). I guess I'm wondering what the point of that really is...
Thanks again everyone for your help and advice as I navigate this...
Do you have any diagnosis from a doctor? Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
A doctor would be doing testing to make sure nothing serious is going on.
I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor. So if you haven't schedule an appointment with a GI doctor or some doctor.
Back on the gluten foods for about a week now and it's hell, if there was any doubt that the blood test wasn't accurate I can say with unerring certainty now it's definitely gluten causing the problems. The headaches, muscle pains, sore throat (reflux no doubt) and general feeling of malaise all back with a vengeance. As predicted it's worse this time round having done gluten-free for a while and no doubt same will apply in the other direction in 3-4 weeks' time.
On the verge of giving up all hope now and this is before I find out how shredded my insides are followed by the further kick in the guts of discovering cross reactivity. What point is there carrying on if the future is this painful, lonely and miserable