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

  • 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. trents
      - trents replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
    2. Dr. Gunn
      - Dr. Gunn replied to anya22's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test interpretations

      As has been pointed out previously, it is not unusual to have mixed tTG and EMA results with active celiac disease. While awaiting your biopsy appointment you could request celiac genetic risk testing. If you don't carry the HLA-DQ2 and/or DQ8 genes, your lifetime risk for celiac disease is < 1%. The celiac risk genes are present in close to 100% of celiac...
    3. Lotte18
      - Lotte18 posted a topic in Publications & Publicity
      0

      Prospective CRISPR research

      Hi all, I'm just wondering if anyone knows whether Theresa Flores of Stanford University has been able to fund her research proposal to use CRISPR technology to directly alter our celiac genetic DNA coding? I know there's been a lot published on using CRISPR to alter wheat so it's "less" aggravating. But no one seems to indicate that wheat would then...
    4. knitty kitty
      - knitty kitty replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

      @Healthierbody2026, Welcome to the forum. We would like some clarification as to whether you have been diagnosed with NCGS or Celiac disease. Many people who have gastrointestinal symptoms are diagnosed with IBD or NCGS without proper investigation into Celiac disease. This can delay a correct diagnosis for as long as ten years or longer. During...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

      A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,702
    • Most Online (within 30 mins)
      7,748
    AMJ59
    Newest Member
    AMJ59
    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

    • trents
      New at gluten sensitivity

      By trents · Posted

      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      As has been pointed out previously, it is not unusual to have mixed tTG and EMA results with active celiac disease. While awaiting your biopsy appointment you could request celiac genetic risk testing. If you don't carry the HLA-DQ2 and/or DQ8 genes, your lifetime risk for celiac disease is < 1%. The celiac risk genes are present in close to 100% of celiac disease cases. If you do carry the genes, biopsy confirmation is essential given your history of symptoms and tTG antibody results.
    • Lotte18
      Prospective CRISPR research

      By Lotte18 · Posted

      Hi all,  I'm just wondering if anyone knows whether Theresa Flores of Stanford University has been able to fund her research proposal to use CRISPR technology to directly alter our celiac genetic DNA coding?  I know there's been a lot published on using CRISPR to alter wheat so it's "less" aggravating.  But no one seems to indicate that wheat would then have to be grown in a vacuum.  My understanding is that wheat can self cross pollinate/contaminate if it's grown downwind from other strains of wheat.  Go ahead and correct me if I'm wrong.   Anyway, what I'd really like to know is, what's up with research to directly alter celiac DNA coding?  Is Flores the only person out there proposing this?  Has the NIH funded a CRISPR study for us?   Many thanks, Charlotte
    • knitty kitty
      New at gluten sensitivity

      By knitty kitty · Posted

      @Healthierbody2026, Welcome to the forum.  We would like some clarification as to whether you have been diagnosed with NCGS or Celiac disease.  Many people who have gastrointestinal symptoms are diagnosed with IBD or NCGS without proper investigation into Celiac disease.  This can delay a correct diagnosis for as long as ten years or longer.  During that time, health problems related to Celiac disease that occur outside of the gastrointestinal system can show up.  One of those health problems is Diabetes.   I got misdiagnosed with IBD because there was no such thing as NCGS at that time.  I was told I was prediabetic for several years.  I became diabetic and had a cascade of health problems for more than ten years after until I was properly diagnosed with Celiac disease.   Did you have a DNA test to see if you carry any of the genes necessary to develop Celiac disease?  Did you have blood tests for anti-gluten antibodies?  Did you have an endoscopy?  Did biopsy samples show intestinal damage consistent with Celiac disease?  If not... I suggest you have a discussion with your doctor about proper testing for Celiac disease and whether you've had them done.  To diagnose NCGS, the doctor has to first rule out Celiac disease.   @trents could you link that article on antibody tests for Celiac?  Thanks!
    • Aretaeus Cappadocia
      New at gluten sensitivity

      By Aretaeus Cappadocia · Posted

      A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another is "Gluten-Free Recipes & Cooking Tips". Others relate to Restaurants, Traveling, and so on. Spend some time surfing through them. - Arguably, the single best food in a gluten-free diet is quinoa. Costco sells a house brand that appears to be gluten-free at a pretty good price. Costco can be a source of some other gluten-free foods. Another resource I found after going gluten-free is AzureStandard.com. I buy a lot of gluten-free foods there. I checked just now and it looks like they have some service to parts of Alabama. - Learn to read food labels carefully and learn what to look for. Don't be shy about calling customer service. - If you can, dedicate your home to be gluten-free. Sort the foodstuffs (any thing that could end up in your mouth) you currently own into "safe" and "not safe". Give away the "not safe". Go through your kitchen systematically and clean everything once. It's like moving into a new apartment of questionable cleanliness. Once it's clean, though, you don't have to worry so much about it. - If you live in a "mixed" household (like mine), start calling gluten-containing foods "poop". Keep as much separate as you reasonably can. While we were transitioning to a safer kitchen overall, we would designate one set of dishes to be safe (and the other for poop). Our kitchen is mostly safe now and we don't segregate dishes anymore. However, when the coprophages want to eat some poop they eat it on the porch and rinse their dishes immediately afterwards. - I don't know the gluten limit for NCGS, but for celiac it is quite low: 20 ppm (parts per million) is the official standard, but some people seem to be sensitive even at that level. One, or maybe a few, breadcrumbs are supposedly enough to trigger symptoms. I haven't tried the experiment myself though. - My transition to gluten-free living has had some silver linings. My health is better. But it has also been a period of personal growth as I've taken up cooking in a serious way. I hope this helps to address your question
×
×
  • 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.