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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.