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New Member Waiting On Test Results...


Jeanettedianne

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Jeanettedianne Newbie

I am a new member here waiting to get back blood test results for celiac. I am 36 years old and live in Ontario canada.

For the last 8 months I have been having extreme stomach issues when I eat Oats or wheat. My symptoms include:

cramping

extreme diahrea

fatigue

muscle pain

headaches

numbness in hands and feet

mild eczema and rosecaea on face

My mother has IBS, has had cancer and was just diagnosed with Osteoporosis.

Before I started getting symptoms of celiacs, I was prone to constipation. I have to wait 5 days to get results back and its driving me crazy. I was told not to change my diet until after i have been diagnosed but i have cut out alot of stuff that really bothers me like cream of wheat and oatmeal. Will that matter? I just can't bring myself to eat something that I know will kill my stomach in 30 minutes. I know no one can diagnose me over a forum but in your opinion does it sound like celiac? Any input would be appreciated.

Also when I do have diahrea it starts off soft like mud and then gradually increases to water with little hair like bits that float, as well as a film of gasoline like stuff that floats on top. Is this typical? I know that was probably too much info but i figure we have all been there! Any response would be greatly appreciated.


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bluebonnet Explorer

i am waiting on results to come back as well. about a year or so ago i researched via internet what the "gasoline swirls" could be an indication of and it said excess proteins. (i get them when i pee). unfortunately i don't recall which site i found that on. when i asked my doctor about it, they said they had never heard of such a thing. my kidney/urine labs came back normal and i've actually had it daily for years so i know its not an infection. maybe it will clear up after gluten is no longer a part of my diet ... another piece to the puzzle?!

i have had all my labs done so the only thing left to do is go gluten free which i officially started yesterday. that seems to be the most popular advice here - to go gluten free no matter what the labs say. your body will show healing and better health. only time will tell!

best wishes while you wait on your results! :)

runningcrazy Contributor

Sounds like it very well could be celiac, especially with those symptoms.

I had awful headaches, cramps, HORRIBLE constipation(my doctor had me on SIX laxatives!) and had lost a lot of weight unintentionally.

I was tested through my doctor twice, negative. I was tested once through a gi doctor, negative.

Then we were really frustrated. So we tested thru enterolab.com, positive. Although it isnt a real diagnosis, it told me i was reacting to gluten and thats all i needed to change. All my symptoms are gone, only 5 months into the diet!

So what im trying to say is, if you get a negative result, it might be a false negative. So depending on your results, you may want to try the diet on your own for 2 months, and see what improves. Be sure you stay vigilent(watch for hidden gluten in natural flavors and malt, etc)

bluebonnet Explorer

i am waiting for enterolab results and i am curious as to what you mean by "not a real diagnosis"? i tested through them because of all i read about their integrity and accurate testing.

pearcenalaska Newbie

I am waiting on test results also but because I live in Alaska, I have to wait 10 days!! I had serious digestive issues for a year before I started to realize that something wasn't right. I tried doing food combining...blah, blah, blah, nothing was working. My stomach would become really nauseous after eating and I was constipated. I get migraines but have since I was 19. I also stumbled upon an email newsletter from a naturopath in Chicago that was talking about adult acne, which I have and how it could be a symptom of gluten sensitivity and so my journey started. It made a lot of sense to me because NOTHING worked to get rid of the extremely painful acne. Plus I have very fair skin, not a great combo. This last summer I decided to go off of gluten and also knew that going off of dairy would be beneficial. This has helped me realize that I am also dairy intolerant. I thought I was self managing okay but am still feeling ill. I bought the book Dangerous Grains and saw that there were things that I was eating that had gluten hidden in it like 'natural flavors'. I decided to find a doctor and get tested.

One way that I can tell that I have eaten something that I shouldn't have is because I get constipated. I can't forget the disgusting room clearing gas! My whole digestive system gets messed up and it takes me a couple of days to get regular again. Then as a delayed reaction my face breaks out into lovely, painful acne. I am hoping because I am still having these symptoms that my test will not be too affected by my mostly gluten free diet for the last 6 months. Even if the test comes back negative I am going to be gluten free forever!

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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