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Does this sound like celiac? (It’s a long post, sorry)

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I am just going to bullet point things here because there’s a lot to say. 

I am 23 and have had stomach issues almost (if not) my entire life. For years though I just thought it was IBS. 

I used to lean closer to having constipation as a child (occasionally, maybe a few times a year getting diarrhoea. I also got a lot of “stomach bugs”) and I remember when I was a child occasionally seeing mucus on my stool, and my stool would regularly change colour, sometimes a golden-brown colour and sometimes dark-brown and in between, for years. 

Most of my life, getting worse in high school, I’ve had a constant aching body, extreme fatigue/sleepiness, migraines/cluster headaches since being in primary school, extreme brain fog (every teacher from pre-school onwards, and in college, thought I had ADHD), with severe concentration, terrible short-term memory and my spatial awareness was something to be seen, it was and still is horrible. I would also bloat for no reason (lasting for hours) and have terrible flatulence, and I mean really bad and a lot. Recently, in the past year/year and a half, I can literally feel the gas moving around in my stomach.

Now, here’s some important information - after all that, everything increased 10 fold when I was around 13 (2008). I woke up one morning, I was dizzy, lightheaded, disorientated, spaced-out, I felt sick and had stomach ache and had extreme fatigue lathargy, and a lot of headaches and think I even developed some neurological problems because I developed synesthesia and couldn’t read like I used to (I’m better now) and this lasted for the better half of 3 maybe 4 years, I was utterly paranoid I had a brain tumour and it was awful. I completely ducked up school because my undiagnosed ADHD symptoms were severe. I have eaten foods containing gluten for over a decade 2-3 times a day in quite high quantities (more than I should). 

It all kind of went away after a few years and since then I have had recurring episodes of random, intense and unexplainable fatigue, increased brain fog and aching joints. I have a bad back, my ribs, elbows, hips, spine, neck, knees, practically every joint, cracks and grinds and at my age (23) that is not normal. 

Now, more important info - I had a massive bout of diarrhoea about 6-7 months ago that lasted about 3 (at most 4) weeks. It was pale, sometimes white and sometimes yellow, it was small, explosive, mostly water, and would float. Then, however, things changed and it began to sink to the bottom of the toilet, was pencil-like (from what I could see because it tends to be small and not very bulky), which has since changed again, and I had loss of appetite, and I felt sick. I also had (and still have) a tender spot on my right-hand side of my abdomen. Now, understandably you can see why I would be worried about this, and a I got up the courage to go the doctors (I have a fear of doctors and I am hesitant about getting a blood test for celiac (I’m considering going back) and practically collapse at the sight of blood so it’s not possible currently), but I have recently gone on a gluten free diet (with some possible, occasional cross-contamination). It was really weird what happened, I can walk into a room for first time in years without forgetting what I went in there for, my borderline dyscalculia (maths dyslexia) has gotten a lot better, I can concentrate so much better and I feel much more confident and happier in general. 

However, Even though my stool is bulking up (number 4 on the Bristol Stool Chart) since all the diarrhoea and other things (which seems too much of a coincidence to me, seeing that I have cut out gluten part way through December and for 5 months previously I had no stool bulking and suddenly it is a healthy stool, and I thought it might be all the fibre but  I added all that extra fibre almost 2 months before going gluten-free and on day 3 of no gluten I had my first healthy stool, I am still getting diarrhoea every now and again and still have that tender spot. Besides that, that’s it really...

Oh, and (I thought this was because I went vegetarian (now vegan) but maybe it isn’t...I was overweight all my life, very, very chubby and in just one year of changing my diet I lost almost 1 stone, which obviously isn’t a lot (my BMI is now perfect for my height), (I have always very small for my age BTW, another tell-tale sign of celiac) but since then and despite eating a lot of junk food (I’m a lot healthier now, I changed my diet drastically goign gluten-free and now have up to 10 portions of fruit and veg a day with processed food almost negligible) I never put on so much as 1 pound and it has been like that for a few years. 

Oh, something else I should mention - I noticed, about 4 years ago, my stools becoming loser. They were still formed (above number 4, mostly number 2) and almost fell out of me. They are still loose now and I’ve just grown used to it. 

Is my stool changing to be more healthy and my mental symptoms a good sign that I am sensitive to gluten? 

Thanks for reading.


PS. I think it’s worth noting as well that I noticed that certain foods give me stomach aches (pastry mostly) and when I’m high school I began to suspect bread upset my stomach (I also think I have lactose intolerance because last time I had some yoghurt (I made an exception one time because I’m still vegan because it has kefir (a pro-biotic) in it and as soon as I had it I got bad diarrhoea and as soon as I stopped it took a day to go away and it stopped.

Edited by AquaGuy

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Unfortunately, we are not doctors, just people who have celiac disease or gluten issues.  If you suspect celiac disease or need a diagnosis, you should consult with your doctor.  Know that celiac disease testing requires you to be consuming gluten daily for 8 to 12 weeks prior to a blood draw.  Should you pursue this?  Only you can make that determination.

I wish you well.  


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On 1/30/2019 at 1:33 PM, AquaGuy said:

Is my stool changing to be more healthy and my mental symptoms a good sign that I am sensitive to gluten? 


As cyclinglady said, we are not doctors and can't diagnose you but you should be tested.

It reminds me a lot of my symptoms'???? I had low stomach acid and it wasn't being properly diagnosed.

see my story about my low stomach acid being misdiagnosed journey.


taking BetaineHCL can help if this is what is happening you to you.

see the thyroidphamacist where she explains how to test this theory by taken BetaineHCL (always with meals) or once a day (always with water and food).


she explains it well and how many of her indistinct IBS and possible NCGS got better when she started supplementing with BetaineHCL. I found from personal experience it was better to start with 3 or 5 capsules with meals and a glass of water and adjust up or down depending on need.

I no longer take BetaineHCL . .. but it helped me. I hope this helps! You the way it did me! but it is not medical advise.

*** this/these opinion(s) are my own and do not reflect an endorsement by celiac.com of these ideas, comments, thoughts or opinions.

2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things."

Posterboy by the Grace of God,

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Aquaguy, there are a whole lot of things that could be causing your symptoms. Only a doctor can give you a specific diagnosis. I told my doctor I went gluten free, my symtoms cleared up, and I felt better. I asked her if I needed to be tested. She said no, as long as I was willing to remain gluten free. I am. I get too ill. Brain fog, loose stool, cramping, welts on shoulders and back, mouth sores, tummy blows up with gas. And yes, awful smelling farts! Gluten also causes inflammation, which may cause pain in the joints. For me it caused gas in my gut, and a tummy bulge that mysteriously disappeared when I went off gluten. Hmmmm....... Also keep in mind that it is very common for gluten intolerance and dairy intolerance to come as a gut wrecking team. Lol! I thought my gut issues were dairy for years until I went off gluten and hey! all along it was the wheat!! Never knew, I went off gluten when a friend suggested it for my blood sugar and I did some research, figured I would try it out. I felt so much better within a few days I figure, ok, this stuff has to be bad for me. Every time I get accidentally exposed to it now, I feel awful. Sometimes, we learn the hard way. 


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