Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Not Going For It


JonesFamily

Recommended Posts

JonesFamily Newbie

My 11 year old son just got diagnosed with Celiacs 2 months ago. The entire family has gone gluten free and the other kids are doing great and don't complain or seem to even miss the gluten. My son however is going crazy. He is miserable without regular bread and he is making everyone else miserable too. The doc said to hold out and see if he accepts it after he starts feeling better. He is a super easy going sweet kid who never complains and usually goes with the flow so this angry kid is tough to deal with. I have found good substitutes for everything except bread. He suffers from stomach aches, anxiety and low energy. He is also not growing well. Since going gluten free he has not started feeling better, hopefully in a few more weeks we will see a difference. I would appreciate any advice if anyone else has experienced something similar. Thanks.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Your son's body is likely working very hard to recover.  Can you bear with it a little?  He may have some withdrawal symptoms and it is difficult.  I remember myself being a crabby brat and overwhelmed.  An adult should be able to be nice, right?  Give him some time to turn the corner.  Maybe plan some favorite videos and stay home extra for rest.  How about forgoing replacement breads and eating more potatoes or wild rice?  After longer without bread some of the substitute breads may taste better.  I really like almond flour bread and so does my family.  I make it by grinding my own almonds.  I do believe once he realizes that he feels better, and any consequences if he cheats; he will get on board with following the diet.  Best of healing to your son.  You may want to keep track of symptoms that he experiences or improvements as he goes.  This will give him a record to gage progress more objectively.

 

Dee

BlessedMommy Rising Star

Have you tried baking your own? My kids love bread made with Pamela's bread mix. I also have a favorite "from scratch" recipe that everybody enjoys. :)

 

Open Original Shared Link

nvsmom Community Regular

My 11 year old son just got diagnosed with Celiacs 2 months ago. The entire family has gone gluten free and the other kids are doing great and don't complain or seem to even miss the gluten. My son however is going crazy. He is miserable without regular bread and he is making everyone else miserable too. The doc said to hold out and see if he accepts it after he starts feeling better. He is a super easy going sweet kid who never complains and usually goes with the flow so this angry kid is tough to deal with. I have found good substitutes for everything except bread. He suffers from stomach aches, anxiety and low energy. He is also not growing well. Since going gluten free he has not started feeling better, hopefully in a few more weeks we will see a difference. I would appreciate any advice if anyone else has experienced something similar. Thanks.

 

Poor kid.  I agree that withdrawal could have been part of the problem.  After being gluten-free for a few days I hit withdrawal (from carbs or gluten or what I have no idea) and I felt even worse than before.  I had a horrendous migraine and fatigue, and my mood was really low - I was annoying myself already.  It lasted close to two weeks but for some it can last a good month.  

 

Then there was the fact that my stomach aches and bloating were not entirely gone until I finally realized that I could not consume dairy.  About 50% of celiacs are lactose intolerant when they are diagnosed.  Many regain the ability to consume dairy when their intestinal villi, which makes the lactase that digests lactose, but that usually takes a good 6 months.  Perhaps remove dairy from his diet and see if that helps.

 

I too would not try to use gluten-free substitutes for the foods he loves, like bread.  It's not the same and when it is not what you are used to the taste and texture can be quite disappointing.  My kids have been gluten-free for 2 years and they are just starting to eat gluten-free sandwiches again - for the longest time we would just eat it as toast so the texture matched up better to normal bread.  Try using other foods like make cracker sandwiches, or use flavoured rice cakes.  We made a LOT of muffins and loaves at first, and now have settles into heavy coconut and flax muffins for their heartiness and protein content - plus rice flour muffins go crumbly too fast, even when stored in the freezer. We added raisens, or chocolate chips, or a sugar dusting to the muffins to make them more enticing early on and then slowly reduced the extra sugary stuff until I was pretty sure that their food was superior to what the average kid was eating... but we did this over many many months so it was not too noticeable.

 

I also packed my kids tasty smoothies, fruits and other foods that where filling and yummy to them so they would fill up on other foods and not miss the sandwich too much. Nuts and seeds were used a lot when not around those with allergies. A big bag of popcorn is always a favourite too.

 

Have you had his nutrient levels checked?  Nutrient levels can stay lowered for months or years after going gluten-free so he may need extra vitamins or even vitamin shots to give him that extra boost.  Have the doctor check Mg, Ca, Fe, K, Cu, Zn, ferritin, D, B12, and A. About 10% of celiacs also have hypothyroidism so you may want to check that eventually too.  Ask for TSH (should be near a 1 regardless of the lab's normal range), free T4 and free T3 (both should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

Hang in there.  :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...