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

Not Celiac - So How Do I Know If I'm Still Gluten Sensitive?


AMaine

Recommended Posts

GFinDC Veteran

I think the goop they give you to drink before a colonoscopy is called Movi-prep or some such. Basically cleans your insides out clean as a whistle. Thee are threads on here where people talk their experiences with the prep and such. Don't plan to go anywhere the day before the test but the bathroom.

I used to have green stool which later became black stool. They say the black indicates bleeding, usually not in the colon though, but higher up. Red blood is supposed to come from the colon. I think the idea on that is if the blood come from higher up it gets digested or broken down so it isn't red any more. I think that is kind of a general thing though, not true in every case.

All that just to say that it is possible to have bleeding and not have Chrohn's. Because I don't have Chrohn's.

Also, you should not expect all your symptoms to clear up in a month. Some people have symptoms continue for years. Not saying at all you shouldn't be checked here, just that still having symptoms doesn't mean their is a more serious problem. If you read my signature or others you can see lists of some other foods that can be problems. Also, eating a whole foods diet is going to get you better faster than eating a lot of gluten-free processed foods. A simple diet works well for us.


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



Celiac.com Sponsor (A8-M):



AMaine Newbie

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

Jessica N. Rookie

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

I can relate to a lot of what you are going through. I am on week 4 of gluten free (week 2 was BAD, I ate lots of processed gluten-free foods and I'm not use to processed so my stomach and intestines were waaayyyy off track). I THINK I am feeling better, bloating is no longer my biggest complaint as it was in the past, but I still get bloated. I feel so discouraged bc like you I want to know if this is it. How long will I have to eat this way to be sure if I am having issues with gluten? It seems so frustrating! I thought I was having issues with dairy the past 3 weeks, but this week I haven't noticed any relation...I feel like I am all over the place. I have C and don't usually get a relieved feeling after BMs, so my doctor wants a colonscopy and also prescribed me an anti-spasmodic to help relax me so I can have more frequent BMs. He said the non-relived feeling could be IBS, can you have IBS and celiac or gluten issues?

AMaine Newbie

The colonoscopy was AWFUL. The prep, which everyone told me was the worst part, was only mildly irritating. The worst part was the IV. It turns out that colonoscopy prep (which leaves you dehydrated) + Raynaud's disease (which makes your blood vessels contract) is a seriously bad combination. About 5 or 6 different people tried to give me an IV, for a grand total of TWELVE jabs. I am bruised from the elbows down - and I'm a choir teacher so I have to play piano. I am sore and miserable. Fortunately they finally got it, or I was about to have an unsedated colonoscopy. I know people have done it but I did NOT want to.

If I don't actually learn something from this, I am going to be seriously annoyed.

AMaine Newbie

So the colonoscopy results showed nothing, and I still don't feel right, so I give up. I just ate a full meal of gluten and I'm not feeling any different yet. How soon until I should notice something if I am going to have effects at all?

Katrala Contributor

Anyone who has been off gluten for awhile may have a reaction when they reintroduce it (this goes for many different foods as well.)

Some people have immediate reactions. Some are more of a built-up reaction. It's really hard to say when / how you will react (if you do react at all.)

Is your doctor going to keep looking for causes?

Could there be any other type of food intolerance going on that you're suspicious of?

AMaine Newbie

My doctor has now ruled out pretty much everything else - the GI specialist has decreed it IBS. Which, I understand, doesn't mean that I don't have a problem with gluten. I was actually told that I had IBS a few years ago (after an insufficient celiac test and not being informed that not having celiac isn't assurance that you can eat gluten comfortably). In the past 2 years I have therefore tried cutting out pretty much everything BUT gluten to no avail. The only thing that I discovered that really bothered me was sugar alcohols, especially sorbitol.

So, I ate some bread (and a cookie) last night and had no immediate reaction. I actually feel pretty fine today too, but I did have a minor migraine this morning for the first time in weeks (lack of migraines has been one indication that has made me feel like the gluten free diet could be working) and while I haven't had major stomach problems, I've been feeling generally like I have mild menstrual cramps. Except, of course, I don't.

So I've decided to stay mostly gluten free, but to stress about it less. I don't mind doing it at home at ALL - the only thing has been ordering when we eat out (which my husband and I like to do a lot) and not being sure if something might have a slight gluten ingredient in it. So with such a mild result, and knowing that i don't have celiac or some other situation that would make eating small amounts of gluten hazardous to my overall health... when we go out, I'll order the most gluten-free item on the menu and not stress if there's something a LITTLE in it. This plan makes me feel MUCH better. I can live with this, even without the 100% certainty that I have a gluten intolerance (still wish I could have that certainty).

I'm also very pleased with myself for having found a bread pan that is long and narrow to hopefully create the perfect sandwich size bread. Feeling a lot calmer and less frustrated!


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



Celiac.com Sponsor (A8-M):



kendon0015 Rookie

I just posted on another thread....PLEASE be sure to have a stool test. I am now being treated for C Diff, a nasty bacterial infection in the intestines. I was on Cipro for three UTI's in a row, and it caused this bacterial overgrowth. Have you been on antibiotics in the last several months?

I'm not a doctor, but MY advise is to start on a good probiotic right away.

Archived

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

  • 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 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    2. - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    4. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

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

    • Total Members
      133,097
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.