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

Still Struggling

honeypond

Recommended Posts

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:

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

Celiac.com Sponsor (A8-M):


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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.