Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


AquaGuy

Recommended Posts

AquaGuy Newbie
(edited)

 

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.

Peace

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome! 

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.  

http://www.cureceliacdisease.org/screening/

Posterboy Mentor
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? 

Aquaguy,

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.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

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).

https://thyroidpharmacist.com/articles/hashimotos-and-low-stomach-acid/

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,

  • 2 weeks later...
Elle77 Newbie

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. 

Elle

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    4. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.