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Still Struggling

honeypond

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honeypond Rookie
honeypond
Posted

I am so frustrated!!!! we were doing so well and then we had a bunch of family in and out of the house over Christimas. I am convinced that my FIL gave something to my son. He thinks that I am just making up the celiac stuff. Anyway, right after his visit Noah got terribly sick. For days he had uncontrollable bowel movements and kept messing his pants. Then after the holidays my kids went home with my parents for a week. My mom was very diligent but she just isn't used to checking everything. Now I am here with them ( long story we are living with them for a month, before we move ) and he will seem better for a couple of days and then poop his pants again. I just can't seem to get him cleaned out.

I am starting to think that he has just become more sensitive and being in another person's house with gluten food all around us is causing him to have a reaction. I am being very diligent to keep his food clear of gluten... but I just can't seem to get him cleaned out this time. I just don't know if I can take another month of this.

Just needed to VENT :angry:

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

It is frustrating when grandparents mean well, but they aren't used to the diet :(

My 11-month-old son has a severe intolerance to casein and corn (and I suspect gluten... I won't even risk it). When we were visiting last month for the holidays and the other grandkids had macaroni and cheese she gave him a spoonful... but only the cheese sauce! That's gluten-free, right?? I pointed out that she just gave him gluten and DAIRY.

Grandma is very supportive of the changes we've made, but she does not understand cross-contamination... and it's so easy to slip up when more than one food intolerance is involved. Plus she's getting older and has a lot of brain fog (she has fibromyalgia, arthritis, diabetes... I'm pretty sure she has a problem with gluten too). I wish I could trust her.

I find that it takes at least a week for my son's eczema to go away after he has one of the forbidden foods. Your son might take a little longer... or he might be getting contaminated despite your best efforts. I'm really sorry you're stuck in this situation!

Sailing Girl Apprentice
Sailing Girl
Posted

It does sound as if he's getting glutened every couple of days. Is Grandma doing the cooking? If so, it could be bad CC (as opposed to actual gluten ingredients).

I find that when DD and I spend time at my parents' house, we do best if I make gluten-free breakfasts and lunches for the two of us, and then "help" my mother (which basically means standing guard over her) as she cooks dinner (she prefers to cook dinner).

I take over a corner of the kitchen they rarely use for food prep as my gluten-free corner, and keep all our foods completely separate from theirs. Otherwise, the chances for CC are astronomical, and we'd be sick the whole visit.

I also re-wash *everything*, even if it came out of the dishwasher. That stems from one time when I watched my mother wipe down a crumb-filled counter with a dishcloth and then use the same dishcloth to wipe down stuff as it came out of the dishwasher!

Good luck in figuring it out -- it sounds like your poor little guy is having a rough time.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

When we're at other people's houses I always have my son use paper towel instead of the kitchen towel when he washes his hands. This probably stems from my own bad habit of wiping my hands with a towel too often without washing them, thus why we go through at least one hand towel a day in the kitchen, frequently more! I figure I'm probably not the only who does this. But in our gluten-free house it doesn't mean a glutening (although still not the greatest in terms of cleanliness).

Maybe there are things like that that are leading to him getting glutened.

DanaDee Newbie
DanaDee
Posted

Honeypond,

We are also going through something, not sure what. DD was diaged in MAY. we are 100% gluten free ( father in law has had the disease long term, so we understood it right away). Her poos were solid, nicely formed from June-DEcember. She has had runny poos for the past month. Going to peid GI today. I suspect 1 of 2 things. I don't think she is getting enough fiber or she may also be intolerant to dairy ( my FIL is). Start keeping a food log. Have everybody that feeds him write down every little BLT ( bite, lick, taste). See if there is a correlation to any one food item, or if someone is giving him gluten, or take a look at fiber intake. My FIL had issues with the fiber, not getting enough, and he's a grown man. His GI had him beef up the fiber, and add fiber supp.

honeypond Rookie
honeypond
Posted
  • Author
Honeypond,

We are also going through something, not sure what. DD was diaged in MAY. we are 100% gluten free ( father in law has had the disease long term, so we understood it right away). Her poos were solid, nicely formed from June-DEcember. She has had runny poos for the past month. Going to peid GI today. I suspect 1 of 2 things. I don't think she is getting enough fiber or she may also be intolerant to dairy ( my FIL is). Start keeping a food log. Have everybody that feeds him write down every little BLT ( bite, lick, taste). See if there is a correlation to any one food item, or if someone is giving him gluten, or take a look at fiber intake. My FIL had issues with the fiber, not getting enough, and he's a grown man. His GI had him beef up the fiber, and add fiber supp.

well... we are still struggling here!! and I think I am going to go nuts with all the poopy pants. It occurred to me the other day though that since I have been here I have been trying a lot of new foods... all that are gluten free/ dairy free. But there is a new store down the road that has a broad range of choices. I am wondering if it is possible that he is intolerant to something in these foods and it is showing up now because I have been giving them in higher doses. At home we did mostly meats, veggies, and fruit with the occasional gluten free cereal or bread. But since I have been here we have been trying out all kinds of gluten-free/Cf bread and cookies. I just wonder if there is something else going on. Because we are trying sooooo hard to keep things clean, UGH!

sandejosgirl Newbie
sandejosgirl
Posted

Heyyah! We went up to stay with friends for a week while my husb. had some training for work. Made all our dinners ahead of time and packed all of our food in & out. We still had trouble with glutening while we were there. I have no idea what the problem was.

Side note: I don't think the new standard for what constitutes "gluten free" is in effect yet, so that means that manufacturers can have up to 200ppm of gluten in foods and still call them "gluten-free" (see previous thread on https://www.celiac.com/gluten-free/index.php?showtopic=53115 about wellshire foods.

My kiddos are only accident/diar. free when we eat whole foods. Too sensitive otherwise.

Happy hunting :)

Stephanie

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

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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
    • trents
      Accuracy of testing concerns

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      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
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