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Still Struggling


honeypond

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honeypond Rookie

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

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

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

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

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,

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

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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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