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

Confused -very Long Sorry!

Jojes

Recommended Posts

Jojes Newbie
Jojes
Posted

I am Irish and living in Manila, Philippines. After years of IBS, I developed chronic diarrhea on a trip to Ireland in October. After a few months I eventually conceded that this wasn't normal and visted a GI specialist here in Manila. I mentioned my apparent intolerance to wheat and dairy and that my symptoms seemed to have been triggered by eating lots of bread, spelt and other yummy gluten-laden foods in Ireland. She agreed that I might have Coeliac Disease but that it was necessary to eliminate other intestinal disease which she did with a colonsocopy, small intestine series (with barium) and a CT scan. THe blood tests for celiac disease are not available here so I pushed for an endoscopy which indicated celiac disease, although it was not conclusive. The doctor was happy that the diarrhea (which had worsened to the stage of making me housebound, not to mention thin and weak) was a symptom of celiac disease and told me to go on a gluten-free diet and left it at that. I took antibiotics for giardia for 7 days which made feel even more wretched, just in case, but that didn't seem to help. After a few gluten-free weeks the diarrhea subsided to be replced by constipation and bloating and then what I would consider very rare for me - normal stool Yippee! I was still exhausted, probably due to nutritional deficiencies, but happy that things were improving. Started gluten-free Dec 23.

On Feb 7, went to a black-tie ball and thought, 'what the hell I'll eat everything'. gluten-free is unheard of here so there was no point in even attempting to explain what I could eat. Within 2 hours if ingesting cheesey potatoes au gratin I was in the toilet - very sobering. It took 6 days for diarrhea to subside but it did, much to my relief and I felt almost 'normal'again although still exhausted. Finally went to Singapore, so had to eat out, on Feb 18 - avoided gluten as far as I know but ate ice cream. The next morning after gluten-free breakfast, diarrhea literally exploded into action and hasn't really improved since. Have been gluten-free again 12 days. Was inadvertently taking dairy from gluten-free bread mix but have not had dairy in 3 days. I'm really wondering if there is something else wrong with me or is to be expected that it would take this long for symptoms to subside. My GI doctor just tells me how dry my skin and hair are, and how thin I am without offering any real, constructive support. Am considering being admitted to hospital for rehydration and withdrawing all foods, to re-introduce them after a few days but don't really want to be seperated from my kids (older daughter is 3 tomorrow).

Does it sound like celiac disease to have a recurrence to this extent after accidental ingestion of gluten or dairy, and if so how long can I expect diarrhea to last?

All insights welcome as I'm very isolated (and now housebound again) over here!

Jo

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted
Does it sound like celiac disease to have a recurrence to this extent after accidental ingestion of gluten or dairy, and if so how long can I expect diarrhea to last?

Hi Jojes,

Yes, it does sound like celiac disease to have your reaction be that bad. It also sounds like you are intolerant to casein (a milk protein) that is found in all dairy products and it actually quite common in Celiacs. See casein and gluten have a very similar molecular structure and for some Celiacs their body sees them as the same, and you will have a bad reaction to either. And the reaction and subsequent symptoms can last up to two weeks. Since you were accidently getting dairy, up until three days ago, it may take a bit longer to get better from the last gluten accident. I assume, since you live in the Philippines, that your diet consists mainly of rice, fish, chicken and veggies and fruit. Am I right? My husband is from the Philippines and even after being in the US for 20 years this is still his primary diet. Quite suitable for being gluten free, except for the sauces. He loves sauces on everything.

You said you are in Manila, and I hope that you are able to get gluten free products more easily than if you were in one of the more remote locations. I do hope that you are able to stay gluten free, and not get contaminated too often.

How are your children? Mine are all mildly to moderately symptomatic, and I am getting them tested now. Celiac is genetic, and although you probably couldn't get them tested right now, you might want to put them on the gluten-free diet if they start showing problems. And not all Celiacs will have the classic symptoms of diarrhea and weight loss. My children tend to have very weak dental enamel, frequent stomachaches, occasional diarrhea, and or constipation, one has migraine like headaches (he's 7), and my daughter (she's 4) vomits occasionally for no appearant reason. Yet they all come back with inconclusive blood tests and no clear answer to if they have celiac disease or not. So I am having them stool and gene tested. I would like to know for sure.

Well, I tend to ramble late at night, so I'm off to bed. Welcome to this site. it's great here.

God bless,

Mariann :)

Jojes Newbie
Jojes
Posted
  • Author

Mariann

I am so grateful for your reply to my message; it sounds like I just have try keep hydrated while my system rebalances itself. Unfortunately my diet is very Western, although I haven't been a big bread or pasta eater for years, pre-diagnosis I loved oatmeal and had a daily bagel. I'm looking into ordering gluten-free foods from Australia; breakfast cereal and snacks are the things I miss most. I am planning on having my daughters (3 & 17 months) tested when we go to Ireland this summer. So far I haven't noticed any symptoms other than constipation in the older one - hopefully that's down to her reluctance to eat anything resembling a fruit or veg! I understand your concern over your children- hopefully their Filipino genes will dominate on this issue. Gosh - I can't wait to lose this foggy brain and get some energy back!

Thank you so much again. I'm very grateful for your support.

Jo

judy04 Rookie
judy04
Posted

Hi,

I am also newly diagnosed and wanted to tell you that I also

get diarrhea after I eat ice cream, milk, cheese. I have given up

on dairy until my villi get healed. I also noticed that dairy causes me to have "brain fog" big time. To counteract the dehydration I usually

get some bananas and Gatorade, it might save you from a trip to the hospital,

at least it is worth a try.Good luck!

Jojes Newbie
Jojes
Posted
  • Author

Judy

How long does the diarrhea last after having dairy? A doctor I spoke to today (my husband in desperation got in touch with a different GI doc) was of the opinion that any gut reaction to dairy should be gone by 4 days. Is this because he doesn't understand celiac disease, do you think? During my last gluten accident recovery period, I did eat cheese for the first 3 days before I copped on :rolleyes: , and diarrhea disappeared after another 3 days. Maybe I wasn't totally recovered (only a week later)when I had the gluten/ice cream incident; perhaps that explains current dire strait. Will stick it out at home with the gatorade and see how I feel tomorrow.

Thank you for your input. It really is great to get support and not feel like I'm going out of my mind!

Jo

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
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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.