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

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

    2. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

    4. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,360
    • Most Online (within 30 mins)
      7,748

    Known1
    Newest Member
    Known1
    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

    • SilkieFairy
      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • 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.  
×
×
  • 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.