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

Newly Diagnosed And A Sudden Relapse Of Symptoms

pickles177

Recommended Posts

pickles177 Newbie
pickles177
Posted

Was diagnosed with celiac disease only two months ago and from that date undertook a completely gluten free diet. My most severe symptom before this was extreme bloating (looking 7 months pregnant) and a lot of pain. Within 3 days of going gluten free my stomach had ease and was going down :lol:

However - only last week suddenly overnight my stomach blew up again - and I am now completely unsure as to what to do next. I've just been diagnosed as anaemic as well and am on iron tablets form the doctor for two months. Some people say I should cut out dairy, some say it could be cereals, some say it could be rice cakes - everybody is telling me something different and I'm left very confused, still severely bloated and in a lot of pain - can anybody tell me if they had this and what they did?

Any advice appreciated

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

A lot of Celiacs react to Dairy. Some can eventually add it back in. If you are certain that you did not get cross contaminated, then I would suspect Dairy. Iron pills can totally screw with your digestive tract. I took "Gentle Iron" by Solgar and it didnt bother me.

MELINE Enthusiast
MELINE
Posted
Was diagnosed with celiac disease only two months ago and from that date undertook a completely gluten free diet. My most severe symptom before this was extreme bloating (looking 7 months pregnant) and a lot of pain. Within 3 days of going gluten free my stomach had ease and was going down :lol:

However - only last week suddenly overnight my stomach blew up again - and I am now completely unsure as to what to do next. I've just been diagnosed as anaemic as well and am on iron tablets form the doctor for two months. Some people say I should cut out dairy, some say it could be cereals, some say it could be rice cakes - everybody is telling me something different and I'm left very confused, still severely bloated and in a lot of pain - can anybody tell me if they had this and what they did?

Any advice appreciated

Hello

I had the same problem and it was all because of lactose/casein and an endless list of other food intolerances AND IBS. So I just had a test for food intolerances and when I exluded the guilty ingredients my belly stopped existing.

Just to let you know that till now I thought that everyone was feeling abdominal pain/bloating after eating. I thought it was normal.....Silly me...

You are not getting any gluten by accident, are you?

And yes lactose/casein intolerance is very common for celiacs.

Good luck

Meline

feelingbetter Rookie
feelingbetter
Posted

Just to echo what has been said here about dairy. I also had lots of problems with bloating, constipation etc until I gave up dairy.

ShayFL Enthusiast
ShayFL
Posted

Meline....what test did you take? Lame Advertisement

MELINE Enthusiast
MELINE
Posted
Meline....what test did you take? Lame Advertisement

There is this lab here in greece that is running some tests , they call them nutritest. Without blood taking they measure the reaction of your body to some food combinations and they give you a list of your intolerances. I think my english is not good enough to explain the process in a better way....It cost me 250 euros to check 180 food ingredients. This can also be done with blood taking tests. It is 99% accurate (for me I think 100%.....)

I don't know the way you do it in your country but it was worth it for sure!!

Kisses

Meline

AliB Enthusiast
AliB
Posted

when I realised I was GI I dropped dairy at the same time as gluten, as well as most carbs and sugar. I thought "in for a penny, in for a pound!".

I had been tootling along fairly well for the last 3 months, getting odd reactions that I thought may be to other foods or just because my gut was still healing, but on Saturday I had a blatantly obvious reaction to gluten. I'm not sure what it was that did it but I suspect some oats that I used in some cookies I made.

Either I reacted to the oats or to some kind of contamination. I didn't sleep all night and was pretty dodgy for a couple days. Then Tuesday it happened again! This time I think it was some little nut and seed cookies that also have oats in them. I have been having them all the way through but lately I noticed that after one or two my stomach wasn't very happy.

What I am thinking is that I have probably been getting some gluten contamination from them all the way through, but suspect it is likely that my immune system is starting to kick back in now and that is why I am starting to get a lot more sensitive. Foods I thought were safe, aren't.

You may have the same problem. I am trying to completely avoid anything that might be a potential trigger or might even remotely have been contaminated.

Just out of interest, because I have had to now remove the oat milk I was having (the jury's out on soy and rice milk is too high in carbs - I am diabetic) I decided to try some cream in my (dairy-free!) hot choc this morning. My guts have been grumbling all afternoon and I have been passing the most obnoxious gas so that is definitely still a no-no. I might try the lactofree milk but although I am pretty sure my problem is lactose, it might be casein too.

Those who are Celiac/GI are typically reactive to other foods particularly dairy as the enzymes that produce lactase are situated at the tips of the villi and they usually are the first things to go in the damage process, mind you I do think you would have reacted to it sooner, but these things have a habit of not doing what we expect!

I still favour some kind of contamination, so look closely at what you are having and perhaps try a basic diet with nothing processed for a while to see if it makes any difference. I am doing the Specific Carbohydrate Diet and it does seem to help (the sweet oaty cookie things are not allowed so me eating them served me right!!!)

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

Celiac.com Sponsor (A8-M):


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 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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.