Difference Between Self Diag And Actual Biopisy Confirmation

[ruca55]

Hello Everyone-

Glad to have found this site. Like everyone else I'm sure, my story is a long one but I'll cut to the chase. I was like a dog chasing my tail trying to discover the cause of my headaches for the last 4 years. (Ever since the birth of my daughter and second c-section) Fast forward to last month, I was told I had to have my gallbladder removed. The thought of surgery scared the daylights out of me, so I started to do some research. I kept coming up with A LOT of symptoms that matched celiac. Anyway the surgery was unavoidable, but I discovered after that food is still causing an issue for me. I have an appt with a GI, but not until next week and who knows how long it will take to have an endo scheduled. I know your not supposed to cut gluten out until your test, but how can I keen eating something that I know is making me feel terrible? I've actually also cut out dairy (and all animal products) as well as caffeine since my surgery. Minutes after consuming gluten I have headache, nausea among other things. I've been eating a bowl of cereal every night to try to keep gluten in my diet, but it's probably not enough for a positive biopsy?

So... my question is

What is the difference between having a confirmation that you do have celiac vs. self diag. At this point I am sure it's either intolerance or celiac, so the end result is the same. I will go on a gluten free diet. I guess my concern is other areas of health, I've been told my kidneys are enlarged (among other medical problems) which I assume is all related to celiac.

Any input would be greatly appreciated.

Thanks

[lynnelise]

The treatment is the same either way. gluten-free diet. However having an actual diagnoses could make things a bit easier. I do not have a "real" diagnoses because I had an EGD a month before to look for an ulcer and they saw inflammation but didn't biopsy. I couldn't afford to have the procedure redone so I just started the diet. The only issue I've had with this is that I cannot get certain vitamin levels checked because my insurance needs some sort of proof that there is a reason I could be deficient before it will pay. Other people find it hard to remain on the diet if they don't have a true diagnoses so if you think that you will get frustrated on the diet and waver then by all means wait and get the testing! Also consider that some people have had negative tests but still saw great improvement on the diet.

[Greentealady]

Hi, I can totally understand where you are coming from. I have struggled like all of you for so many years with no answers or shall I say the wrong answers. I am 46 and when I was 26 I was DX with psoriatic arthritis. This is an autoimmune disease, I had to go through mega dr.'s before this was dx. I had lots of inflammation at the time. I mimed lost 50 lbs and thankfully most of my symptoms of the arthritis diminished. As far back as I can remember I have been bloaty, gassy, constipation with alternating diarrhea, stomach cramps and a gurgle stomach. I had a few episodes a while back and was actually throwing up, went to the er twice and was sent home told I had IBS. 2 weeks later my appendix almost burst and I have to have two surgeries. I still think that was the reason for the episodes and they missed it in the er. Over the last two yrs my gurgle and bloating and constipation has gotten worse, sadly it is something you just start to view as normal. After being fed up one day I started some research and found the info on celiacs. Immed I got excited and went to the store and started in on a gluten-free and Dairy free diet. I know I should have waited and got tested but I have little faith in the medical system and wanted to feel better asap. I knew I had an autoimmune problem and I have a lot of the symptoms so I just went for it. I am in general a very good eater, mostly veggies and organic everything so it was not a sure hard change for me. I did start to feel better :-) BUT then I would have a day or two where my stomach would kinda hurt and I would be constipated, never earth shattering but a little uncomfy. I still have a gurgle stomach almost every time after I eat but not the cramping just the gurgle. I am sure I am still not 100% gluten-free and Dairy free as I am still learning so that could be the issue with a few set backs OR I could be completely wrong and I am not even close to celiacs. I know the test is not 100% so I am not sure if I should eat the gluten then take it or just keep doing what I am doing. Does it take a while to not have symptoms? Does anyone else still have issues once gluten-free? I have been doing this about one month now.

I can feel your situation and am right there with you. Let's ponder this one together :-)

[domesticactivist]

I think the main difference is how seriously people take you. If you have an actual diagnosis, insurance may be harder to get, but once you have it, they'll cover more. If you have to deal with getting accommodations at school, work, or in other situations, an actual diagnosis will make all the difference. It's also effective in shutting down people's "a little bit won't hurt" pressure if you can show them medical proof.

If you don't care what other people think and are able to take care of yourself in work/school/event/dealing with doctor situations, then I don't think the diagnosis by endo matters much.

Personally, we decided the the trauma of another procedure and the risks associated with putting our son back on a gluten diet were too high and not worth it. However, we're homeschoolers and don't have to deal with getting a reluctant school to make accommodations. I've been able to advocate successfully in other situations so far.