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Mystery Gi Problems In 3 Year Old

browniebite

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browniebite Newbie
browniebite
Posted

Is it possible to still have celiac disease after a negative TRANSGLUTAMINASE IGA AB and normal total IGA?   my 3 year old soon has had severe constipation, practically since birth (he was on formula), and we are down to giving him mineral oil enemas just about everyday because we can't figure out what is wrong with him. He is below the 3rd percentile for weight and isn't gaining the way he should be.  He has been at 26 lbs for about the last 8 months.  His stomach is always distended, even with the enemas, and he is very gassy.  He takes miralax, senna, and enemas.  He was been hospitalized twice for disimpactions.  They also found eosinophils in his colon.  We have cut out his other food allergies - milk,corn,cinammon,garlic,sesame,and peanuts, but have seen no improvement.  It seems like it's getting worse.  I am gluten sensitive but have a negative blood test for celiac.  If anyone can offer any advice I'd appreciate it!  Thank you :)   

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anand Newbie
anand
Posted

Please do a gene test for celiac...a negative means negative for celiac , while a positive means one has the gene and not necessarily the disease. The gene test can be done through a cheek swab....like from this lab....

Open Original Shared Link

Michael Briggs Newbie
Michael Briggs
Posted

Has he been tested for low stomach acid, or low enzyme production? Low levels of those can slow digestion, as week as promoting small intestinal bacterial overgrowth, which can cause the distention.

Have you tried giving him enzymes and betaine HCl, or digestive bitters to promote production of stomach acid and enzymes? See Open Original Shared Link

greenbeanie Enthusiast
greenbeanie
Posted

Have you tried probiotics? My daughter has celiac and had positive blood tests and biopsy, but my celiac tests were negative, and probiotics have helped both of us tremendously. She's almost five and has been taking probiotics daily since her diagnosis last June. She had a very distended tummy before, and it still does stick out quite a bit after she eats dairy sometimes - but then she poops a lot and the tummy goes back down. I sometimes give her Cultrelle children's chewables and sometimes give her an adult flavorless powder packet that I mix with juice. Both are dairy free as well as gluten free. Within an hour she always poops - without fail! She was not constipated before, but her stools had always been mushy and sticky. Now they are firm and solid. Obviously a lot of that has to do with healing on a gluten free diet too, but if I stop the probiotics her stools get yucky again within a few days. So the probiotics definitely seem to be doing something powerful, over and above the diet.

I'll spare you the details, but my own experience with probiotics has been similarly positive. I am thin but used to look like I was six months pregnant after eating, and my bloating went away too. I have also been strictly gluten free since last summer, though i don't have a clear diagnosis myself - but, like my daughter, my stomach bloats right back up if I stop the probiotics. It's puzzling, too, because I've only had antibiotics a few times in my life, and I eat very little sugar, so there's no apparent reason my gut flora should be out of whack. Anyhow, it's worth a try.

Oh, and i just saw that this was your first post. Welcome to the forum!

browniebite Newbie
browniebite
Posted
  • Author

He is on creon enzyme and takes Florastor probiotics daily. He also takes fiber supplements. He has had two colonoscopies with biopsies and a barium enema. Next week he's seeing a surgeon for a full thickness rectal biopsy. No one can seem figure out what's wrong with him.

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

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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