Feel 'fake' If I'm Not Diagnosed

[avtastic]

Hi All (slightly long, sorry)

I just got back from the doctors office, I have had a terrible week. I am not diagnosed Celiac but for the last 3 months have been on a gluten free diet after doing some research. Quick recap : I have always had stomach problems, bloating, pain, constipation, blood in my stools but never really diarrhea. I have a history of depression and have psoriasis, and osteopenia. Back in September I discovered I had some cysts in my breasts and that is what lead me to reading about gluten and wheat being inflammatory and that psoriasis -- anyways, I cut gluten and started to feel great. Really great. It was amazing.

Fast forward to this weekend. I know I had gluten on Saturday, something I thought was made gluten free was not and I only discovered this after I ate it. I tried not to stress or think about it, thinking maybe I'll be fine. But this entire week has been rough. I was constipated and in pain for 3 days then the opposite (which is new for me). It has been a bad week, so bad I had to leave work early today because I was in pain, which is when I decided to call my doctor.

They took blood today and are going to test for celiac even though it could come back negative the doctor thought it'd be a good idea to do it while I was there and if it comes back negative but I still am having problems then we'll take it from there.

Anyways, after all this I am pretty sure I feel best off gluten but for some odd reason I feel like a fake without that diagnosis. Any thoughts on 1. my actually having a gluten intolerance - maybe if someone else had a similar story but not diagnosed will make me feel better and 2. my going for further tests if and 3. how to feel better I'm in terrible pain!

[Happyw5]

Your tests will probably come back negative if you have been off gluten for 3 months. From everything I have read, you should be eating alot of gluten for at least 5 weeks before testing. When I was tested I had already been wheat free, so I am assuming that is why my test was negative.

It can be very frustrating to not have an official diagnosis, but I have been gluten free for over 2 years and I would never go back. When I have been glutened, I always get constipated before I get diarrhea! Good luck

[bartfull]

Lots of us are self-diagnosed. Some got tested but came back negative. (False negatives are fairly common.) But if someone feels better on a gluten-free diet, that indicates that they either have celiac or non-celiac gluten intolerance.

My Mom had biopsy-diagnosed celiac. I, without insurance, never got tested, but the gluten-free diet "cured" my psoriasis, helped my digestion, cleared up my brain fog, and got rid of my insomnia. I KNOW I have celiac. I never tell people I am self-diagnosed because they might think I'm just jumping on the fad bandwagon. Instead, when I talk about it I say, "Since I have been diagnosed with celiac disease, I can't eat gluten." See? It's not really a lie - I never say DOCTOR diagnosed, but I don't say SELF diagnosed either. Just "diagnosed". No one has ever questioned it, and I certainly don't question it either. Gluten makes me really sick, so I KNOW.

[avtastic]

Your tests will probably come back negative if you have been off gluten for 3 months. From everything I have read, you should be eating alot of gluten for at least 5 weeks before testing. When I was tested I had already been wheat free, so I am assuming that is why my test was negative.

It can be very frustrating to not have an official diagnosis, but I have been gluten free for over 2 years and I would never go back. When I have been glutened, I always get constipated before I get diarrhea! Good luck

Lots of us are self-diagnosed. Some got tested but came back negative. (False negatives are fairly common.) But if someone feels better on a gluten-free diet, that indicates that they either have celiac or non-celiac gluten intolerance.

My Mom had biopsy-diagnosed celiac. I, without insurance, never got tested, but the gluten-free diet "cured" my psoriasis, helped my digestion, cleared up my brain fog, and got rid of my insomnia. I KNOW I have celiac. I never tell people I am self-diagnosed because they might think I'm just jumping on the fad bandwagon. Instead, when I talk about it I say, "Since I have been diagnosed with celiac disease, I can't eat gluten." See? It's not really a lie - I never say DOCTOR diagnosed, but I don't say SELF diagnosed either. Just "diagnosed". No one has ever questioned it, and I certainly don't question it either. Gluten makes me really sick, so I KNOW.

That actually does make me feel better!! Between that and Happyw saying they get constipated before diarrhea I feel like I'm not making it up. I know it's weird, but even when I had the cysts in my breasts I felt like if I kept fighting for a diagnosis I WANTED to be sick and was faking it. But I guess I don't have to tell people how I found out or go into my whole story. And after this week I can say with 100% certainty that Gluten MESSES ME UP!

[Takala]

I am in the "self- diagnosed" category because the doctors did not recognize my symptoms are classic for the neurological form of the disease. I did have, after a huge, huge struggle and lots of wasted time, scans which show brain damage and damage to the bone in my spine. Doctor at that time still refused to consider celiac, told me diet had nothing to do with my other symptoms, basically implied I was faking my ataxia/loss of balance, even tho a year earlier they had tested my coordination and reflexes, I gave up on that one. I don't throw a normal blood test, or rather, I do throw a nearly normal blood test, and thus have never had a biopsy. I didn't have much gastro symptoms at the time, thought some heartburn was normal, thought I had gall bladder problems. NOW, many years later, I am finally sensitive to cross contamination, this increase in sensitivity is another sign that it is certainly gluten intolerance. Celiac is just the most severe form of gluten intolerance.

Since so many of my other, chronic problems have resolved, or lessened greatly, on this diet, my current PCP humors me that I avoid gluten very strictly.

Test to the best of your ability, save the results, (hey, I have holes in my brain, how am I faking that one ? ) then avoid eating foods which make you feel sick, irregardless of the outcome of the tests.

Try taking gluten free B vitamin complex, calcium (citrate is good), vitamin D, and magnesium.

If I get hit, I try to do the opposite of what a lot of people do here: I try to metabolize it faster so it burns out of my system faster, I will drink a lot of water, take some ginger, eat no grains, and exercise, even if that is the very last thing I feel like doing, as long as I don't push to where I feel like puking . If I'm really groggy, I will just give in and try to sleep it off, but not all in one session, because laying down for a long time means I stiffen up, then I have to do all this work to loosen back up.

[dilettantesteph]

I hope that you can get a proper diagnosis. It is hard to be taken seriously with so many people trying the gluten free diet for trendy reasons. One on my band mates is in that category. He still eats regular wheat bread, but thinks it healthier to have gluten free crackers. Also, if down the road you develop some problems, like continuing symptoms on the gluten free diet, it is a lot easier to determine the actual problem if you have a proper diagnosis.

If not, what can you do? You don't need a doctor's permission to not eat gluten. If you feel better without it, then don't eat it. One of these days the medical community will catch up.

[nvsmom]

You definitely appear to have some type of gluten intolerance, it's just a matter of which one. Non-Celiac Gluten Intolerance (NCGI - that's one your can say to people and they probably won't question it... especially if you say it fast ) or celiac disease. Many of your symptoms sound familiar to me too. Gluten intolerance symptoms are generally the same between both groups, as far as I can tell the only difference is that only celiac is currently considered to be an autoimmune disease (so you are more likely to develop another AI disease than the average person) and celiac disease results in organ damage (usually small intestine).

...Either way, the only way to feel better is to avoid gluten.

If you can just stick with the gluten-free diet without a diagnosis, I say go for it. I do understand how that could be hard though; I'm not sure if I would be 100% gluten-free now if I hadn't been properly diagnosed. i was used to feeling poorly so it wasn't a big deal to me any more. I think I would have ended up going "gluten-lite" without a diagnosis, which would have been a bad thing since I am a celiac, so I would have been doing continuous damage to my gut and upping my risks of cancer. I mention all this because if you suspect you are a celiac and decide to skip testing, please keep in mind that you have to stick to the diet completely or you'll be harming your self.

To feel better, many avoid milk (as you know), increase their vitamins (like D, B12, Ca and iron), probiotics help, and avoiding sugar and processed foods helps too (especially if you have too much yeast). Supplements that reduce inflammation can help (like nettle) and glutamine helps with healing of muscles and intestines.

Good luck to you. I hope you feel well soon.

[mommida]

I think you are going to find out that your reactions to accidental gluten exposure are not fake. Testing just is not accurate enough to "catch" every case and diagnose it. There is now recognized NCGI Non-Celiac gluten intolerance the medical community is admitting some have non diagnosable gut damage, but are suffering from gluten exposure. Mostly noticed by nuerological issues. (This is such a accepted generaliztion, I wonder how many other symptoms and damage can't be proven.)