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. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,078
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.