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snomnky

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snomnky Apprentice

My son is 2.5, he has Celiac, his reactions are atypical according to the GI, his poop turns white/grey and it looks and smells EXACTLY like vomit. He used to vomit when he was younger, but now it is just the poop and irritability. Anyway, I am concerned that even though he has been diagnosed via biopsy that something else is happening. I just really don't understand the poop smelling like vomit and when i tell a doc they look at me like i am crazy. He is still in diapers and the poop burns he bottom to the point of widespread blisters that open and ooze, it causes immense pain for him. Does anyones children have a similar reaction?

My question- how long does it take your kids (or yourself) to react once you have ingested gluten. My Son is in a reaction, but we can't trace it to a specific food, the time line just doesn't make sense. (another reason why i am paranoid there is something else going on)

By the way, we have done extensive allergy testing and have found DS to have no other allergies or intolerances to foods, besides Celiac.

Thanks for the help!


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tarnalberry Community Regular

it takes me somewhere between 15 minutes and 2 hours. it takes others here more than a day.

Cherry Tart Apprentice

Hello!

My reaction time is usually 15 - 20 minutes for a heavy glutening or as long as two hours - depends on the amount for me. It usually takes me a day or two to recover. If you're sure his reaction isn't to food, could it be his/your toiletries? Have you checked out his/your lotion, powder, and shampoo? At that age, they are more apt to putting things in their mouths or swallowing water/shampoo during a bath. I'm not sure how long he's been gluten-free, but it may take him a while to recover if he's new to the diet. It took 6 months for my system to calm down. Hope he's feeling better soon! :)

kenlove Rising Star

For me its usually 10 to 30 minutes, faster when I inhale something in the air than when i eat something that was supposedly gluten-free.

My son is 2.5, he has Celiac, his reactions are atypical according to the GI, his poop turns white/grey and it looks and smells EXACTLY like vomit. He used to vomit when he was younger, but now it is just the poop and irritability. Anyway, I am concerned that even though he has been diagnosed via biopsy that something else is happening. I just really don't understand the poop smelling like vomit and when i tell a doc they look at me like i am crazy. He is still in diapers and the poop burns he bottom to the point of widespread blisters that open and ooze, it causes immense pain for him. Does anyones children have a similar reaction?

My question- how long does it take your kids (or yourself) to react once you have ingested gluten. My Son is in a reaction, but we can't trace it to a specific food, the time line just doesn't make sense. (another reason why i am paranoid there is something else going on)

By the way, we have done extensive allergy testing and have found DS to have no other allergies or intolerances to foods, besides Celiac.

Thanks for the help!

snomnky Apprentice

Oh, thank you! For some reason i thought the reaction would take a lot longer, but he grabbed a bag of chips that had been in a bag with wheat bread, then took a sip of my water that i had been drinking while eating the wheat bread. I am sure that was it! Since it was only 5hrs or so i thought it was something else. But that would explain it!

what about vomit smelling poop, a normal response? He has been gluten-free since 6mo old and we have eliminated nearly every bit of gluten from our home (other than the occasional sandwich for me and his dad) but every reaction seems to be worse than the one before.

Kaycee Collaborator

It takes me a couple of hours for my stomach to know that I have eaten gluten. The diarrhoea doesn't set in till about a day and a half later, unless it is a bad case, and then it is sooner than that. As for the vomit smelling poop, I know when I have been glutened my poop smells terrible, and that is part and parcel of coeliac.

Cathy

JustMe75 Enthusiast

It takes me 15 minutes to an hour, and my first symptom is urgent diarrhea that lasts for hours. It still amazes me that something I barely finished chewing could already have gone through my whole digestive tract and caused problems. As far as the vomit smell goes, does it smell like bile, like acidy vomit? That would explain the burning. I know for me when I get sick it burns like you wouldn't believe (and I'm not even sitting in it ;) ) and I think its the acids from my stomach that were suposed to digest the food but were forced out too fast.


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jerseyangel Proficient

It normally takes about 2 hours for me. I get the acid poops too--that usually goes on for a few days. I feel much better by a week, but not completely back to normal for almost 2 weeks.

My reactions are much less severe than they used to be (I've been gluten-free for 2.5 years now)

aeshlea Apprentice

also dosent take me too long. If its a small amount I feel it quicker ironically. And it usually is just a massive headache within 20-30 minutes...but if its a larger amount I always have D within a 2 hour time period..usually by the 1 and a !/2 hour mark.

snomnky Apprentice

I really applicate all the replies. We went 5 mo with no reactions! But then a reaction happens and I get worried and start wondering if this is normal. He is very verbal for a 2 yr old boy, so with this poop he told us right away that there was an owie in his pants we couldn't see.

I always worry that with every exposure he will be so much worse next time, this has been the case so far. With this reaction we saw a severe behavioral reaction as well.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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. 
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      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 😁.
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      @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 
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