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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.