What Else Should I Look For?

[glutenfr3309]

2 weeks ago i had an endoscopy. afterwards the doctor asked me again if i had history of celiac in my family. as far as anyone is aware there isn't any. today i found out that it's not celiac but most likely just an intolerance, that there wasn't any sprue but that my intestines showed inflammation. i was advised to start a gluten-free diet and to call them in a month to make a follow up appointment. this was relayed to me by the receptionist. shouldn't the doc be telling me this? i feel like i'm being hung out to dry because it's not celiac. he mentioned if it was, then i would see a nutritionist. should i still see one?

last summer i went to a doc for a general physical and mentioned my symptoms. the blood test came back negative but i don't know the details of it. i was told if i felt better cutting gluten out then it was good enough for the doc. feeling unsatisfied i went to a different doc who then advised me to see this GI doc.

i'm feeling a little unsatisfied still. the GI doc has experience other patients with celiac but it still makes me wonder if it could be that but just the 'beginning' stages. is there anything else i should do- i'm worried that i won't be getting the proper nutrients/vitamins gluten foods provide.

i have a good sense of what i can and cannot have with a gluten-free diet and have found resources online to help me but i am even more confused now. i thought celiac causes inflammation? the doc said he saw damage so how can it be negative.

any comments are welcome. i guess now i'm just trying to make sense of everything and of the big lifestyle change i'm about to begin.

[rachel-gf]

I'm trying to figure this out as well. From my understanding, most doctors will not diagnose celiac unless they see two things: (1) lots of intra-epithelial lymphocytes (IELs) and villus atrophy. (You can look these things up online for photos and explanations.)

The other thing I would do if I were you is to find a good list of the symptoms of wheat allergy, celiac, and gluten sensitivity. There's a decent list on wikipedia, and many other web sites. Rate yourself on each symptom. What conclusions can you draw? Consider doing the same thing with other disorders that have similar symptoms.

When you're done with testing, go on a strict gluten-free diet and keep a journal of how things change. Rate the same symptoms as above every few weeks. If you notice improvement, maybe wheat/gluten were the problem. If things don't change, you need to keep looking.

Best of luck.

[bridgetm]

I'm in a similar situation. I had stomach pain for months. Aside from low iron my blood tests and ultrasounds came up clean so my doc ordered the Celiac-sprue test (I noticed that I was feeling worse after a week of my usual not-feeling-well diet of cereals and bread). Negative. He prescribed iron and Vitamin C and told me to check back when I get home for the summer. But he said that if I noticed any difference on a gluten-free, or at least limited, diet I should keep it up since it obviously wouldn't hurt me any worse as long as I took a multi-vitamin and was conscious of keeping a balanced diet.

I'm two weeks in and feeling a bit better. I wasn't entirely convinced but when I got tired of checking labels and gave in to a slice of pie and a piece of bread on Easter, I learned my lesson. I'm going to stick with it. Label reading and asking endless questions is becoming less of a hassle (at least to me; it drives my friends crazy when a quick grocery trip turns into comparison and compromise shopping) and it's been worth it.

[Roda]

I'm trying to figure this out as well. From my understanding, most doctors will not diagnose celiac unless they see two things: (1) lots of intra-epithelial lymphocytes (IELs) and villus atrophy. (You can look these things up online for photos and explanations.)

On my original biopsy in 2008 my IELs were reported below what is expected to be seen in celiac. However, I had villous blunting and acute and chronic inflammation. The pathologist went onto say that serologic testing often can preclude clear cut histologic findings.

I think the pathologist was pretty smart. I had already had positive blood work and based on what my biopsy showed the GI doc diagnosed me with celiac. I'm definately celiac. I'm experiencing some problems again now. Have you had the EGD and biopsy?

[glutenfr3309]

my symptoms are definitely from gluten! i felt awful for a few days earlier in the week after eating some things over the weekend. i'm still fatigued but my stomach has felt pretty good the last 2 days. i have noticed though that dairy and maybe even garlic is bothering me. i guess i need to cut dairy out for a while.

i have my follow up appointment on the 22nd- hopefully i'll get a little more direction. i've reading as much as i can about gluten sensitivity/celiac and got my triumph dining books so i'm ready to go full out!