So Confused

[kayrayusa]

Hi everyone. I've had a year from hell. I just don't know what to do next and am very frustrated and sad. Since gettting sick I've lost friends, watched my work performance decrease, and am feeling so old (I'm 32).

Starting in January of '06 I had chronic abdominal pain and started to drop weight until I was around 95 lbs (I'm 5'6.5") despite trying to eat all the time with pain. I hurt whether I ate or didn't eat. So my GP tested and found me to have iron deficient anemia and ordered biopsies to be done. I went ahead and removed gluten from my diet before the biopsies because I was desperate to see if the pain went away. And it did mostly Thank GOD! However, I was told after all the scopes and blood tests that I should have stayed on a gluten diet so that the testing could detect celiac or not (they could have told me that prior!). Anyways, here I am now with two negative results yet I had such a relief of symptoms when I removed gluten and I've always been dairy intolerant.

Starting at infancy I have had feeding problems, I have an underdeveloped esophagus which is GERD afflicted, and I was an endurance athlete for 8 years which included tons of 'carb loading' which led to race morning pain that I thought was just nerves. I'd spend so long in the Honey Bucket the morning after carb loading that I almost missed the start of my event. Also I could never keep weight on when my mileage got high no matter how much I ate. Then in college I lived off of homemade bread one winter and broke out in severe hives that the dr. said was the worst case he had ever seen. I still didn't get tested for allergies though being a poor college student. I just became scared to eat. This resulted in weight loss. At several times in my life I have been around 90 lbs because eating is just such a pain to me, and I suffer from clinical depression, PTSD, anxiety, ovarian cysts, dental problems, and might menstruate 1 X this year if I'm lucky.

So I'm now on an antidepressant, prilosec, and iron supplements, and both my current GI and GP deny my having celiac. I'm feeling worse though after a rebellious two weeks of eating whatever I wanted that led to weight gain, but it's all falling off now because there's pain again. I don't want to get super sick again, but I'm so frustrated and stressed.

Should I get tested by an allergist?

Are the enterolab tests worth the price I'd have to charge?

Why are my doctors so close minded and reliant on those tests that are archaic?

Should I see an endocrinologist to find out about my hormones?

I have a wonderful therapist and one friend who was diagnosed in April '06 with celiac. I just want validation. I want to be certain of my diagnosis, but I don't want to self-diagnose completely because, well, I don't probably have all the knowledge to make the diagnosis although I have read so much and the diagnosis just makes sense in the context of my life and the co-occurrence of other conditions.

Sorry this got so long, but thank you. It feels good to find a place where people understand. I appreciate any time anyone spends on replying.

[mommida]

There are many people here who have self diagnosed.

I went through testing on a gluten free diet because the Gastro said the tests were so so accurate "it would be fine", and after the endo scope said "You're too young to have celiac disease".

Doctors seem to feel that Celiac Disease is the latest fad diagnoses, and were taught it was a RARE disease occurring in 1 out of 40,000; not 1 out of 133 Americans.

L.

[plantime]

If you feel better on a glutenfree diet, there is no reason not to stick with it. You don't need a doctor's diagnosis to eat in a manner that makes your body and mind feel hearty and hale. It could be that you did not have enough damage to show up on tests, or you could be intolerant instead of celiac.

[celiacgirls]

Like the others said, if you feel better on the diet, you can just do that. If you feel the need for confirmation, do the Enterolab test. You can do just the gluten intolerance test for $99 + 20 SH, I think. That is how we started out but have since done a lot of testing with them. I needed the confirmation for my daughter in order to stay strict.

[AndreaB]

Like the others said, if you feel better on the diet, you can just do that. If you feel the need for confirmation, do the Enterolab test. You can do just the gluten intolerance test for $99 + 20 SH, I think. That is how we started out but have since done a lot of testing with them. I needed the confirmation for my daughter in order to stay strict.

I totally agree with this post.

I did have the whole schmeel done with enterolab from the get go. I was interested in the genetics too. I charged my family's tests with them because I wanted it done. You would need to do what you are comfortable with. Gluten free with or without confirmation.