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Newly Diagnosed, Very Sick 1Yo

Ginkgo100

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Ginkgo100 Rookie
Ginkgo100
Posted

At his 12-month well-child visit, my son (the youngest of 3 boys) turned out not to be a well child

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seezee Explorer
seezee
Posted

There's a pretty good book by Dana Korn called Raising Our Celiac Kids that you may want to try.

It sounds like they diagnosed your son and just sent you on your way. Where we go they have training by the nutritionist for the family on this. We took an hour long training where the nutritionist explained ways to have a shared kitchen or not, how to read labels. Are you seeing a pediatric GI doctor for follow-up care? Where we go they have you meet with the GI doctor regularly to check in to make sure your child is growing/healing. They check for vitamin deficiencies and other symptoms. I am not sure where you live but there are a number of celiac specialists and centers around. My daughter had issues with Vit. D deficiency that they treated w/prescription supplements.

My daughter took close to two years to really get better, but she started gaining weight and feeling better in about two months.

Ginkgo100 Rookie
Ginkgo100
Posted
  • Author

There's a pretty good book by Dana Korn called Raising Our Celiac Kids that you may want to try.

It sounds like they diagnosed your son and just sent you on your way. Where we go they have training by the nutritionist for the family on this. We took an hour long training where the nutritionist explained ways to have a shared kitchen or not, how to read labels. Are you seeing a pediatric GI doctor for follow-up care? Where we go they have you meet with the GI doctor regularly to check in to make sure your child is growing/healing. They check for vitamin deficiencies and other symptoms. I am not sure where you live but there are a number of celiac specialists and centers around. My daughter had issues with Vit. D deficiency that they treated w/prescription supplements.

My daughter took close to two years to really get better, but she started gaining weight and feeling better in about two months.

Actually, it's not as bad as I guess I made it sound. He's seeing his regular pedi every week right now, plus we're following up with his pedi-GI doc from the hospital this coming week. We met with a nutritionist before we left the hospital and my pedi gave me a referral for another nutritionist consult. We live in Houston, which has the world-renowned Texas Medical Center, so I'm sure I can find some celiac experts around here.

Yesterday after I posted this, he had his weekly follow-up with the regular pedi, and he lost a few MORE ounces. :( The hopeful thing is that the pedi thinks it may actually be that he just caught a diarrhea virus (it's going around the family) with bad timing. And that would make sense, because this week the diarrhea is more watery, less gooey/fatty. He DOES seem to be feeling better: less cranky, and the developmental milestones that sort of stalled have been progressing again this week. (He learned to walk at 10 months, but he never got good at it; he had 1 word at 11 months, but had not had any other speech development. This week he's walking everywhere, used his first baby sign, and said "mama" this morning!) So I am hoping that is all it is.

Oh, and we're also having the 3yo tested. He's always had mild to moderate diarrhea. The 6yo, I am not worried about, because he has no symptoms, is not genetically related and is not even Caucasian (the race most prone to celiac). (Yes, we adopted him.) And I will definitely check out that book, thanks for the tip!

Robyn

seezee Explorer
seezee
Posted

Phew.

It sounds like your baby is getting better. It does take time to heal and we found out when my daughter was in fourth grade so babies probably get better faster.

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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