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Sorry, this post is going be long, but I'm not sure what could be relevant!.  

I've 27 now and been struggling with symptoms for years, I've recently had a celiac test which was supposedly negative (not sure I trust it as they said my results/bloods were mislabeled or something when I first called?)

I never saw the doctor, except for depression and anxiety, and chickenpox when I was a kid, until I got pregnant at 23.

Then started the constipation, nosebleeds, extreme exhaustion everyday for months (I would had to sit down in the middle of the supermarket, or anywhere after being upright a few mins).  I have always had very low blood pressure- that was the only health problem I ever had but it never needed treatment.  

 

At the time I dismissed all this stuff as normal in pregnancy, but now I wonder if it's relevant, because I never felt right again afterwards.  Then I had an incident where a routine vaginal exam made me bleed, they said my membranes were extremely friable.   I gave birth naturally and almost died from over 2 litres  of bloodloss afterward.  Something they gave me to stop the bleeding made me have awful D for hours, stuck on a bedpan too :P  Anyway, first when I had problems with D and constipation afterward, I just thought it was an aftereffect of that.  

In the 4 years since then I've had stomach trouble pretty much non-stop, mainly constipation but also loose stools, going 10x plus a day with normal stool, feeling like I had to go all the time, intermittent D, as if I'd eaten something dodgy, but much too often...  I thought I had worms at one point, after googling symptoms- my doctor was useless, just told me I was imagining it basically.  

After the birth I started getting yeast infections, which got more and more often, until I was having them pretty much constantly, for years and the cream stuff wouldn't work anymore.  My doctor gave me a 6 month script for the pill (fluconazole i think?), which also stopped working.  I pretty much figured out my husband and I had to stop having relations (he was treated too, made no difference to me getting it), and it calmed down a bit with some herbal remedies I tried as well as the candida diet, which I felt great on but was a bit full-on, and my family rebelled at, so we went off it. I had started getting sinus infections every couple months too.  I should mention the tiredness too, I started getting awful PMS every month, joint pain so I felt like I had flu, could sleep all day.  Had to force myself to do anything, I was so dispirited, but didn't connect the dots at all, and of course the doc was useless.  Nothing seemed to make any difference- I never ever suspected gluten. I got ringworm and athletes foot too, as well as anything else going around.

So in March 2013 I started the paleo diet in an attempt to eat healthier- I persuaded my husband to do it too.  There's no dairy or grains on the diet.  I began to feel better- not really immediately, but after a few weeks I couldn't believe how much better I felt- more energy, normal toliet habits, and my stomach had stopped hurting and being bloated- I hadn't even known I was bloated before, I'd thought that was normal.  i could remember stuff better, and think more clearly.  It was brilliant by the end- we did it for about 3 months very strictly.  I couldn't really believe that I'd felt that bad before- LOL- now I can barely believe I felt so good on the diet. Even my spots and dandruff cleared up, my hair was no longer greasy, I could deal with hot and cold temperatures so much better, stopped sweating so much and it didn't smell awful like before, hands and feet weren't cold all the time.  So many things that I just thought were normal for me

 

 

After being strict for months, we decided to cheat a bit and have a bagel (montreal bagels are the best).  Both my husband and I had one for brunch.  By that evening he was power puking and I was laid in bed bloated, headache, aching, feeling absolutely awful.  I felt bad for days.  So no more cheating, we said, but then at a barbecue a few weeks later we cheated with a burger, same thing happened.  So then I googled away and came up with gluten intolerance and celiac.  I realised we'd have to start eating gluten to be tested, so we did, and symptoms subsided into a general feeling crappy again after a few weeks.  Then I started getting blood in my stool.  I still hadn't contacted doctor, so ended up going to emergency room when after a few days of dark red blood mixed in stool, the stool turned black, shiny looking and stank.  By the time I got seen there was no blood anymore, I was having D, so was sent home with colonoscopy referral. 2 weeks later had blood in stool in same pattern as before, same duration.  I didn't bother going anywhere with it, since I already had the referral.  I should mention I had hemorrhoids in pregnancy and it was different, they also looked for them when i went to the hospital.  I had to move country then suddenly for personal reasons, saw uk gastro doc who reordered colonscopy, which was fine, he also listened to my concerns about celiac and ordered the test, which was negative as I said.

 

 

Since I came back to the UK I mentioned my health problems to my brother who has suffered similar problems to me- also been fobbed off by doctors due to him having depression and anxiety like me.  He ate gluten free and couldn't believe the improvement- for him  it was especially aching joints and his spots clearing up, and mental clarity.  He had the celiac test and also came up negative.  Then he read online about dermatitis herpetiformis and told us about the itchy rash on his bottom, lol, which he's been too embarrassed to tell anyone about.  Off he went to the docs again, and this they couldn't ignore, since apparently it's such a classic presentation.  So now he's waiting for an endoscopy to confirm celiac.

 

So now I'm wondering, do I push for an endoscopy too, since my brother almost certainly has coeliac and his symptoms are so similar to mine- and he also got a negative blood test?  

I should mention as well, my parents both have a long history of stomach problems, but no coeliac is in my family that I know of.  My other brother does have diabetes type 1 though.

 

It would be great to get some opinions on whether or not i could be celiac- I'm very nervous at the possibility of having an endoscope but also can't stand living like this either!

Any help/advice would be much appreciated!

 

As if this huge post isn't enough, lol, I forgot to mention weird tingling pain in my hands, which started after I went back on gluten the 1st time and lasted weeks, bad enough to stop me sleeping.  I freaked out and made the doc test for rheumatoid arthritis (my grandma had it).  It went away.  It came back recently but not as painful, this doc said it could be anxiety.  Again it went away on its own.  As well I used to get small red circular patches of dry skin on my upper arms that went away while I was doing the paleo diet.

Edited by gemmied

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First off, an endoscopy is not a big deal. You may feel some discomfort after, but it will generally be mild. Second, it's hard to say for sure if you have celiac, but your symptoms and the fact you felt better after being off gluten for a period of time suggest, at the very least, you have some level of intolerance. Because my biopsy was negative, I was not officially diagnosed with celiac despite strong evidence from the blood tests. Still, the matter is quite settled in mind, and those rare occasions when I've accidentally ingested gluten have left little doubt of the problem.

 

It is possible to have false positives and false negatives (depending on the situation) when it comes to blood tests and endoscopies. For me, and for others, the bottom line really comes from how you feel when you eliminate gluten from your diet. I like that I can get out of bed in the morning and not feel exhausted. I like not racing to the nearest restroom on a regular basis. 

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