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Wondering If My Son Has Celiac Disease?


KaidensMummy

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KaidensMummy Rookie

I am new to this board & was wondering if someone could help out with some advice.

I have been so frustrated because I feel the doctor is not doing enough.

My son just turned 2 yrs old & has diarrhea everyday.

When my son was a baby on formula the doctor said that he was lactose intolerant as he was crying, bloating, diarrhea. We then took him off of regular formula & switched to soy formula & everything seemed to be much better.

Since my son has been eating he has had diarrhea.

The diarrhea is VERY smelly & is sometimes mucusy(sp), slimy, oily with food that is undigested a lot of times. We have gone to the doctor MANY times asking him what the problem could be. I have asked if I should quit giving him any dairy products, he told me not to do that.

He has told me to try the BRAT diet which I have & it seemed to help but he said this was a temporary fix basically as he was thinking at the time that he had some sort of bacterial infection.

The doctor also ran a test for low iron as my son was ill a lot last winter with all sorts of things like Bronchitis, croup, strep, eye & ear infections etc. & the test turned back fine.

The only thing we know is he has in asthma & lactose intolerance.

2 weeks ago we went to the doctor again because my son had diarrhea again but this time he had these things in it, for 2 days when he had a BM his BM;s were full of these little clear gel liquid filled things....smaller than the size of a pea. Then he woke up on the 2nd day & vomitted up a bit of food & also these gel things.....so i actually picked these gel looking things up & put them in a clear baggy & took them to the drs. office. The doc said he had no clue what this was & wanted me to take stool samples & send them in to the lab.

the doctor says the test say my son is fine.

I have no clue what to do now & am pulling out hair as to what I should be doing.

My son is having this diarrhea everyday & it seems to happen shortly after eating & his diaper is full right away & sometimes even leaks.

Does this sound like Celiac disease as this seems to be the only thing I could think it may be???

Thanks for your help.


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Mother of Jibril Enthusiast

It's difficult to get an accurate result from testing for celiac in such a small child. The best thing is simply to take suspicious food(s) out of your son's diet and see if it makes a difference. Gluten is a great place to start. So is dairy! There's nothing unhealthy about this kind of diet. My nine-month-old son is intolerant to casein (dairy proteins) and corn... maybe gluten too, but at this point I'm not willing to give it a try. Even a tiny amount of dairy or corn gives him diarrhea and terrible eczema on his face :( So... he eats a lot of rice and vegetables with a little meat (he doesn't like fruit very much) and I just started giving him a little soy yogurt with active cultures. He's doing GREAT.

The crying, bloating, and gas is very familiar! My guess is that the "gel" things are undigested fat. That's a common thing to see in the stools of people with food intolerance problems. Since you've ruled out a lot of other things, I would give the gluten-free, dairy-free diet a try.

KaidensMummy Rookie

Thanks so much for that advice...I feel strangely relieved knowing that you & others Im sure know what this is all about.

It has been so frustrating not knowing what to do & not really getting any help from the doctor.

I will now looking into trying a gluten & dairy free diet. I am suspecting that this is not going to be easy so I will need to start checking out this site & figuring out what a gluten & dairy free diet is as I have NO clue where to start.

Again I thank you for your advice & I will get down to the business of reading ;)

Mother of Jibril Enthusiast
Thanks so much for that advice...I feel strangely relieved knowing that you & others Im sure know what this is all about.

It has been so frustrating not knowing what to do & not really getting any help from the doctor.

I know what you mean. I figured out the casein intolerance on my own... my son had colic, diarrhea, lots of sinus congestion, projectile vomiting, and streaks of blood in his diapers... all from the casein getting through my breast milk. I found some good information at www.kellymom.com. He started to improve within a week after I stopped eating dairy. Within six weeks he was back to normal. His pediatrician was completely unhelpful. She wasn't opposed to the idea of changing his diet... she just didn't know much and was skeptical that it would make a difference.

Finding this forum has been a big relief. It's nice to feel understood and have a place to talk about these issues :) Plus I've learned SO much... not just about gluten, but about food intolerance and autoimmune disorders in general.

Incidentally, the Gluten-free Casein-free diet is recommended for kids with autism... not that your son has it! But if you're looking for gluten-free/dairy-free recipes for kids, those are good sites to look at. Another good idea is to post a list of your son's favorite foods on a new thread. People would be happy to help you find substitutions. :P

KaidensMummy Rookie
I know what you mean. I figured out the casein intolerance on my own... my son had colic, diarrhea, lots of sinus congestion, projectile vomiting, and streaks of blood in his diapers... all from the casein getting through my breast milk. I found some good information at www.kellymom.com. He started to improve within a week after I stopped eating dairy. Within six weeks he was back to normal. His pediatrician was completely unhelpful. She wasn't opposed to the idea of changing his diet... she just didn't know much and was skeptical that it would make a difference.

Finding this forum has been a big relief. It's nice to feel understood and have a place to talk about these issues :) Plus I've learned SO much... not just about gluten, but about food intolerance and autoimmune disorders in general.

Incidentally, the Gluten-free Casein-free diet is recommended for kids with autism... not that your son has it! But if you're looking for gluten-free/dairy-free recipes for kids, those are good sites to look at. Another good idea is to post a list of your son's favorite foods on a new thread. People would be happy to help you find substitutions. :P

Thanks for all the tips :) I REALLY appreciate it. It's all so overwhelming

  • 2 weeks later...
boobybabs Rookie

In reference to "wondering if my son has celiac disease" - not sure if this helps, but if you rule out celiac, you might want to research other diseases......a few months ago, I was watching a TV series called "Mystery diagnosis", and there was a family on there whose daughter had years of diarrhea - every time they went to the doctor, they were told that it was nothing serious - ex..would grow out of it, etc.....she continued to experience these problems for several years - eventually when their daughter was older, she was diagnosised with a specific disease....unfortunately, cannot remember more details....maybe they have a website - I do not believe the diagnosis was life threatening....just so that you don't worry about that - In many episodes of this program - people can go from doctor to doctor and remain undiagnosed......In a lot of cases, the diseases are rare and many doctors do not have the knowledge of them..........hope it helps you

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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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