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Confused -very Long Sorry!

Jojes

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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

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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

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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