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

Celiac Or Ibs

KirstySF

Recommended Posts

KirstySF Rookie
KirstySF
Posted

Hi there

Pleased to meet everyone. Just wanted to say hi! before telling my story.

I have been suffering from a severely bloated tummy for around two years now. The one that sticks around and makes you feel like youve gained 10 pounds overnite. At first I thought I was imagining it, could i have put on what feels like a huge ring round my belly and back??

At first I thought, it must be a probiotic thing....however I have been taking pro-biotics for many years and why would my intestinal flora suddenly take a turn for the worst.

So, the major bloat, if I think back first started when I started work in a deli in Los Angeles....I have lived in the States for around a year and had not eaten bread since arriving as I did not enjoy the variety of supermarket breads. To my delight, I started at the deli which sold french bread and my discovery of sourdough....I ate it pretty much every day. I also discovered Soy Lattes ( was never a coffee drinker before moving here from the UK)

I dont think my stomach has ever been right since.

I then moved to SF and forgive me, im trying to remember when my stomach pain was at its worst.

I had battered fish and chips (scottish style) with :unsure: :unsure: lots of malt vinegar....deep fried goodness. A rare treat!

Again, my stomach inflated to the point of my clothes not fitting....and looking like i was pregnant.

My gyn put me on a strict yeast free diet for other reasons, I cut out coffee, sugars good and bad, i stopped eating bad carbs, changed pasta to the brown rice pasta and over a period of 3 months, I lost ten pounds and my stomach returned to its normal flat state (something i hadnt seen in 2 years and my pooing became regular and healthy (constipation has always been a problem for me and the uk doc always just fobbed me off with IBS) without any sort of tests.

So.....I was on the yeast free diet, everything was great, tummy better, felt great.....then i fell off my diet wagon by eating a box of regular mac-n-cheese on a rainy day and BAM!!! Stomach inflated almost instantly....

This was mid dec.....I eat a pretty healthy and wholesome diet anyway but after researching i came across celiac and its symptoms and thought this is ME.

I couldnt resist eating a piece of garlic nan 2 weeks ago....and the next day, I have never felt so ill.....run down, chronically fatigued.....no energy, nauseous.

I have made an appointment with a GI for March 1st. ( the earliest appt i could get :(

Im also trying to cut out gluten and wheat and see if it makes me feel better. I think I have done pretty well for the past 2 weeks not having what or gluten but I have been constipated for ten days now and my skin looks like a teenage boy going through puberty (this is normal?) I also have mucus downstairs? (shudder) :unsure:

I guess what I am asking, does this sound like celiac to you?

Is there any remedy to stop the bloating, and why does it not go away?

Ive heard that following a gluten free diet is not good before taking the test, is this true?

What can I expect from my GI Visit, what should i ask?

Any help or advice would be awesome!!!

Thanks so much for listening to me.

Kind regards

KirstySF

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Wow, lots of questions.

First: It very well could be Celiac, or some other food allergy.

Second: If it is related to food, when you stop eating what you're reacting to, hopefully your tummy bloat will go away.

Third: True, could cause false negatives. On the other hand, if you determine that gluten makes you feel bad, you can choose to follow the diet whether or not you have positive test results.

Someone else will have to cover the fourth question. I didn't need a GI's opinion to make my choice.

darlindeb25 Collaborator
darlindeb25
Posted

I agree with Jestgar, totally. I had doctored for so long and had so many wrong answers, I didn't need a GI to say yes or no, I know.

sunshinen Apprentice
sunshinen
Posted

Sounds exactly like celiac to me. And maybe a sensitivity to soy as well? Of course, this is not the only possibility, so it is best to see a doctor.

And yes, since the damage of celiac accrues over time, if you have not been eating gluten regularly for some time, a false negative is likely. If you have only eaten gluten a couple of times in the past few months, it is very unlikely that you will test positive.

Many doctors will tell you it can't be celiac because of (x). Many of those doctors are basing their opinion on very outdated facts and are wrong. This is why 97% of those with celiac disease don't know they have it. Doctors don't test for it. So unless their reasoning is that the results will not be accurate because you have not been eating enough gluten, insist on the tests.

If they don't think the tests will be accurate, rule out other possibilities for the symptoms, and listen to your body. If it doesn't like gluten, it doesn't like gluten, and it may not be worth eating enough gluten to try to get an accurate result on the tests.

CarlaB Enthusiast
CarlaB
Posted

Sounds like celiac or candida or both.

If you need a GI to verify what's wrong, you need to keep eating a LOT of gluten. There is already a chance of getting a false negative, you increase that chance by going gluten-free prior to testing.

Even if you get a negative result, I'd try the diet. Some of us (like me) are non-celiac gluten intolerant. That means we get the symptoms, but not the intestinal damage (most of time).

CarlaB Enthusiast
CarlaB
Posted

Mucus at the middle of the cycle is normal, if it's all the time, it's most likely candida or a bacterial infection ... you should have your gynecologist check it out.

KirstySF Rookie
KirstySF
Posted
  • Author
Mucus at the middle of the cycle is normal, if it's all the time, it's most likely candida or a bacterial infection ... you should have your gynecologist check it out.

The mucus I was referring too was not gyny related.....in my stools :( (sniff)

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

Celiac.com Sponsor (A8-M):


Felidae Enthusiast
Felidae
Posted

Sounds like celiac or gluten intolerance to me. Definitely keep eating gluten before you see the GI. You need to have an endoscopy and the GI needs to see if there is villi damage. However, keep in mind that many people have non-celiac gluten intolerance which won't neccessarily show any intestinal damage. So, if you get a negative test and you still feel ill try the gluten-free dietary change. This way you'll know if gluten is affecting you.

happygirl Collaborator
happygirl
Posted

You will need to continue to eat gluten if you want to have as accurate as testing as possible.

However, you could have a problem with gluten that won't show up on tests, so regardless of your Celiac results, it may be worth your while to embark on a strict gluten free diet for a more extended period of time.

When you go to the GI, mention that you would like to be tested for Celiac via the bloodwork. Here is the full panel. Insist that the WHOLE panel is run, as many doctors only run part of it. Print this out, and bring it with you. You don't want to hear "oh, I didn't run this test, go back to eating gluten" in a few weeks!

Open Original Shared Link (the rest of the website is very informative, as well, and its worth looking over)

Best of luck, and we are happy you have found this board. Regardless of your results, I hope that you find some answers and your health improves!

Laura

KirstySF Rookie
KirstySF
Posted
  • Author
You will need to continue to eat gluten if you want to have as accurate as testing as possible.

However, you could have a problem with gluten that won't show up on tests, so regardless of your Celiac results, it may be worth your while to embark on a strict gluten free diet for a more extended period of time.

When you go to the GI, mention that you would like to be tested for Celiac via the bloodwork. Here is the full panel. Insist that the WHOLE panel is run, as many doctors only run part of it. Print this out, and bring it with you. You don't want to hear "oh, I didn't run this test, go back to eating gluten" in a few weeks!

Open Original Shared Link (the rest of the website is very informative, as well, and its worth looking over)

Best of luck, and we are happy you have found this board. Regardless of your results, I hope that you find some answers and your health improves!

Laura

KirstySF Rookie
KirstySF
Posted
  • Author

Thanks so much everyone for your kind words and support....

Theres so much great info on this board....Im so glad Ive found it :)

KirstySF :P:rolleyes:

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    4. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.