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

Do these symptoms fit?

alittle
 Share

Recommended Posts

alittle Newbie
alittle
Posted

Hello,

I’ve had IBS for as long as I can remember. I live overseas and my gut seems to to be getting worse since I moved here (coming up on 2 years from Canada). I had a colonoscopy back in my 20s (almost 40 now) but it didn’t show anything. I’m currently awaiting blood results but thought I’d ask you your thoughts while I wait.

Family history- mother has diverticulitis, brother has ulcerative colitis, cousin has celiac. 
 

Here are my symptoms:

- gut wrenching pain- like someone is wringing out my insides

- bloating and burping

- diarrhea 

- nausea

- bouts of what appears to be food poisoning (twice in the last 6 months)

- super iron deficient

- tired all the time

- HLA- DQ2.5 genetic variant 

- Zonulin level high 

- positive for anti- nuclear anti-bodies.

I’ve never really had a problem with gluten before or at least I don’t think I do. So, I’ve never even tried a gluten-free diet and now I’m not going to until I’ve had scopes which I’m pretty sure will be my next steps.

thoughts or advice?

Thanks in advance!

 

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

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted

Hello alittle and welcome to the forum!

Here in the UK where I live a large percentage of IBS sufferers turn out to be coeliacs when they are finally tested.  There was a big campaign about it here a few years ago - the number was astonishing, I think it was nearly  a third, although I've just read another figure - one in four.   Of course, there can also be overlap - I happen to have both conditions, according to my gastroenterologist! So I think you are very wise to try to rule out coeliac disease.  

Keep us posted!

Cristiana

GodsGal Community Regular
GodsGal
Posted
2 hours ago, alittle said:

Hello,

I’ve had IBS for as long as I can remember. I live overseas and my gut seems to to be getting worse since I moved here (coming up on 2 years from Canada). I had a colonoscopy back in my 20s (almost 40 now) but it didn’t show anything. I’m currently awaiting blood results but thought I’d ask you your thoughts while I wait.

Family history- mother has diverticulitis, brother has ulcerative colitis, cousin has celiac. 
 

Here are my symptoms:

- gut wrenching pain- like someone is wringing out my insides

- bloating and burping

- diarrhea 

- nausea

- bouts of what appears to be food poisoning (twice in the last 6 months)

- super iron deficient

- tired all the time

- HLA- DQ2.5 genetic variant 

- Zonulin level high 

- positive for anti- nuclear anti-bodies.

I’ve never really had a problem with gluten before or at least I don’t think I do. So, I’ve never even tried a gluten-free diet and now I’m not going to until I’ve had scopes which I’m pretty sure will be my next steps.

thoughts or advice?

Thanks in advance!

 

Hi! Sorry you are feeling so bad! That's no fun. I am not a medical professional. Please don't take any of this as medical advice. I think that you are definitely on the right track and that you are wise to wait on going gluten free until you get the tests/scans done. 

A couple of questions are coming to mind:

1) You mentioned that your symptoms are worse since moving. Have there been any significant changes in your diet?

2) Have you ruled out any other intolerances (i.e. dairy, eggs, corn, etc)?

I hope this helps and that you can get relief soon! Keep us posted!

Dianasolvei Rookie
Dianasolvei
Posted

I have IBS as well as the DQ8 gene. I kept going gluten free because every time I eat something with it I get super sick. Dr. tested me, but I’d been off gluten for many months. She wanted to do a gluten challenge with me but I’m not going there! I don’t want to have to face recovery and lose months of health for it! Her current recommendation is just to completely avoid gluten as there is a suspicion of celiac. I had similar symptoms to you, and it ended up that my blood sugar was too high. Turned out to be the start of pre-diabetes. Ugh.

Scott Adams Grand Master
Scott Adams
Posted

Hi @Dianasolvei, welcome to the forum!

If I were pre-diabetic I would go on a paleo diet. Everything I've read on this points to too many carbs & sugar. Being gluten-free if you are gluten sensitive of celiac could also help improve your blood sugar.

Dianasolvei Rookie
Dianasolvei
Posted
29 minutes ago, Scott Adams said:

Hi @Dianasolvei, welcome to the forum!

If I were pre-diabetic I would go on a paleo diet. Everything I've read on this points to too many carbs & sugar. Being gluten-free if you are gluten sensitive of celiac could also help improve your blood sugar.

Hi Scott...thanks! Glad to find this forum. Yes...it looks like paleo is the way to go!

Posterboy Mentor
Posterboy
Posted
On 5/28/2021 at 12:25 PM, Dianasolvei said:

I have IBS as well as the DQ8 gene. I kept going gluten free because every time I eat something with it I get super sick. Dr. tested me, but I’d been off gluten for many months. She wanted to do a gluten challenge with me but I’m not going there! I don’t want to have to face recovery and lose months of health for it! Her current recommendation is just to completely avoid gluten as there is a suspicion of celiac. I had similar symptoms to you, and it ended up that my blood sugar was too high. Turned out to be the start of pre-diabetes. Ugh.

Diana,

Try taking some Chromium Poly.  It can help your elevated blood sugars. It did mine!

Chromium helps Insulin work better by a factor 100x to 1 is what I read once.....I was low in Chromium.....and doctor's don't study Vitamin(s) these days....because they don't believe they can help you.....

I dropped my A1C two whole points in 2 months going from Diabetic to prediabetic......and it has been well controlled since.

Also try taking you some Benfotiamine (a Fat Soluble B-1) found in the Diabetic section.

It can help any complications you might be having.

Benfotiamine has been used in the treatment of Diabetic Polyneuropathy.

Here is an article about it....

https://www.naturalmedicinejournal.com/journal/2018-11/thiamine-deficiency-and-diabetic-polyneuropathy

Thiamine works best when you take it with a highly absorbed Magnesium like Magnesium Citrate or Magnesium always with meals.

The Fat Soluble B-1s (Benfotiamine etc.) need a meal to help them be absorbed.

After taking Benfotiamine (again as a fat soluble B-1) I went from a diabetic with complications to an uncomplicated Pre-diabetic.

Thiamine can be good for Cholesterol as well.

Here is the reference work on the benefit of Thiamine for Cholesterol.

Entitled "Metabolic Benefits of Six-month Thiamine Supplementation in Patients With and Without Diabetes Mellitus Type 2"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921172/

I hope this is helpful but it is not medical advice.

Posterboy,

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

Celiac.com Sponsor (A8-M):


Dianasolvei Rookie
Dianasolvei
Posted

Thanks! That’s an amazing accomplishment! Diet and nutrition play a huge role for sure. I will take a look at those supplements!🙂

Posterboy Mentor
Posterboy
Posted
On 5/27/2021 at 9:52 AM, alittle said:

Hello,

I’ve had IBS for as long as I can remember. I live overseas and my gut seems to to be getting worse since I moved here (coming up on 2 years from Canada). I had a colonoscopy back in my 20s (almost 40 now) but it didn’t show anything. I’m currently awaiting blood results but thought I’d ask you your thoughts while I wait.

Family history- mother has diverticulitis, brother has ulcerative colitis, cousin has celiac. 
 

Here are my symptoms:

- gut wrenching pain- like someone is wringing out my insides

- bloating and burping

- diarrhea 

- nausea

- bouts of what appears to be food poisoning (twice in the last 6 months)

- super iron deficient

- tired all the time

- HLA- DQ2.5 genetic variant 

- Zonulin level high 

- positive for anti- nuclear anti-bodies.

I’ve never really had a problem with gluten before or at least I don’t think I do. So, I’ve never even tried a gluten-free diet and now I’m not going to until I’ve had scopes which I’m pretty sure will be my next steps.

thoughts or advice?

Thanks in advance!

 

Alittle,

The High Zonulin levels might be a sign of either Low Stomach Acid or Low Niacin levels.

Here is the blog that links these connections.

https://alobar.livejournal.com/2930798.html#%2F2930798.html

I wrote about these connections in this Posterboy blog post....

It is kind of long....so you might want to read it more than once...the hard research is the 2nd part of the Blog post....

IN the ADDENDUM section....

You might also want to take some Thiamine and some Tryptophan.

Here is Posterboy blog post I wrote about Thiamine deficiency in Celiac disease.

Here is the research that shows how Tryptophan can help the Intestines of Celiac's heal faster...

https://www.news-medical.net/news/20201022/Tryptophan-found-in-turkeys-can-accelerate-intestinal-healing-in-people-with-celiac-disease.aspx

I hope this is helpful but it is not medical advice.

Posterboy,

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
 Share
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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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

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

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.