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Wondering if 2 yo may have celiac. Looking for insight

Atflook

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Atflook Newbie
Atflook
Posted

Hi! I've been lurking for awhile but decided today to jump in and explain our situation as we are desperately looking for answers. My son is 2 and has always been small. He only weighs 26 lbs at 28 months. He has had stomach problems for as long a son I can remember. When he was theee months old he was diagnosed with reflux and I went dairy free to help with that. He really never took to eating and ate mostly breast milk until he was about 19 months old. When he was 23 months, he was waking up and screaming about stomach pain and doctors said he had an immense amount of gas in his stomach and said to try a dairy free diet. Going dairy free REALLY helped with the behavioral issues and he stopped having reflux constantly. Recently however, he has so much gas, is constantly burping. Has huge and VERY LOOSE stools (clumpy like not properly digested), has bouts of vomiting with no other symptoms, is lethargic, chronic abdominal pain and bouts of decreased appetite. My doctor doesn't take me seriously and always has an answer for the throwing up but I feel like this has been going on forever and it must be more. His belly has ALWAYS been distended and I never thought anything of it until being on this thread. I have no idea if it could be celiac? We are just desperate to figure out what to do and feel like no one is taking us seriously...

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Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, Atflook said:

Hi! I've been lurking for awhile but decided today to jump in and explain our situation as we are desperately looking for answers. My son is 2 and has always been small. He only weighs 26 lbs at 28 months. He has had stomach problems for as long a son I can remember. When he was theee months old he was diagnosed with reflux and I went dairy free to help with that. He really never took to eating and ate mostly breast milk until he was about 19 months old. When he was 23 months, he was waking up and screaming about stomach pain and doctors said he had an immense amount of gas in his stomach and said to try a dairy free diet. Going dairy free REALLY helped with the behavioral issues and he stopped having reflux constantly. Recently however, he has so much gas, is constantly burping. Has huge and VERY LOOSE stools (clumpy like not properly digested), has bouts of vomiting with no other symptoms, is lethargic, chronic abdominal pain and bouts of decreased appetite. My doctor doesn't take me seriously and always has an answer for the throwing up but I feel like this has been going on forever and it must be more. His belly has ALWAYS been distended and I never thought anything of it until being on this thread. I have no idea if it could be celiac? We are just desperate to figure out what to do and feel like no one is taking us seriously...

The on,y thing I can say is schedule the celiac blood panel asap. We can't tell you if he has it or not as there are 300 or so symptoms, but it sure sounds a lot like it to me.

Keep him on gluten until all the tests are done.

cyclinglady Grand Master
cyclinglady
Posted

Here are the tests:

Open Original Shared Link

Because he is little, insist on the DGP tests as well.   He may be too young for TTG antibodies to show up. 

Here  is more information from Jebby who is a member and is a Neonatal doctor (preemies) who also has celiac disease:

http://www.thepatientceliac.com/2013/04/18/update-on-celiac-disease-screening-in-infants-and-toddlers/

Doctor not working for you?  Get a second opinion.  Then you will find out if your current doctor is competent or not.  

  • 1 month later...
Overwhelmed mother Newbie
Overwhelmed mother
Posted

I had similar issues with my daughter and getting no where with doctors. Alot of the time if they have a reaction to dairy then a gluten free diet will help. I done this for my baby. No dairy no gluten no soy and no eggs as she reach the age of 2 I started to introduce dairy and gluten to see if her body would take it. The pain started again so I took her to a naturopath and he verified she shldnt have dairy gluten soy eggs or corn. Follow your instincts and here is no harm in cutting out gluten even if he can have it. 

Jenniw Newbie
Jenniw
Posted

My son has celiac and was diagnosed  at 3 years old. The symptoms  he had was pale looking diarrhea  and throwing up randomly other wise fine.  But he also had a pot belly which for toddler celiac usually is stomach related issues. I would definitely get celiac blood work done to at least rule it out. But he needs to be eatting gluten to be able to tell. So at least a slice of bread a day. I hope you get the answer you are looking for. 

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      My only proof

      By Mari · Posted

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

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      @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
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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 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @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!
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