Jump to content
  • Welcome to Celiac.com!

    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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Question About My Son's Symptoms


prairiemamma

Recommended Posts

prairiemamma Apprentice

A bit of a recap. Monday we got his results, Tuesday -did alot of gluten-free shopping and switching to gluten-free items. He has been 100% gluten-free Wednesday on (to my knowledge anyway). A little tmi (I'm sorry) but when I was wiping him (he just turned 4) he was all excited about his poop. He had what he called biggy poops instead of owie poops. It was a normal bowel movement where 9/10 his poops are nasty.

Yesterday he told me his 'tummy no hurt'. Another normal poop again yesterday too.

Today, after his bday party, he thanked me. I thought he was talking about the party, so I told that I was happy he had fun. 'no, thank you tummy no hurt'

Could all this be from the gluten? I've been in tears tonight. Just the thought of my baby being in pain for the past 4 years and us not cluing in breaks my heart. Keep in mind that cognitively he is behind (slowly catching up) and until this summer his speech was very poor. He has come a long way these past few months.

His bowels have always been an issue, but the Dr always chalked it up to his diet (he eats A LOT of fruits/veg.)

If it is gluten that has been the culprit, would he be feeling better this quickly, or just a coincidence?? I guess I'm just feeling a ton of mommy guilt. :(


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



Celiac.com Sponsor (A8-M):



Invictus Newbie

First off --

Let me begin by saying: YOU are an awesome mother! You seem to be going above and beyond to help your son heal from this pestering condition. It is absolutely possible that her is reacting to a diet exempt from gluten. Being the young age he is, he will heal a thousand times quicker than any adult.

In young children you can literally see the healing process take hold within a matter of days or even weeks. Adults on the other hand, often take 6 months - 2 years or more to heal from the cummulitive damage over a lifetime.

I'm certain that the rest of this forum can attest: YOU are a GREAT mom. Don't be so hard on yourself. I only wish my parents caught mine at that young of an age.

Huggenkiss27 Rookie

I just want to chime in and say you're doing a great job! I'm nearly 30 and my parents tell stories about how sick I was as a child yet they never found out what was wrong with me. It's just in the last 6 months I've been diagnosed! Sounds like your kiddo is feeling better and I hope he continues to get better!

nvsmom Community Regular

Yeah mom! I was another who had stomachaches as a kid but the adults and doctors in my life never figured it out. That's wonderful that you're helping him with this now. :)

When I went gluten-free, my stomachaches completely stopped within two weeks. To be honest, I didn't realize how often I had stomachaches because I got used to having them. If your son was like me, the stomachaches were usually an annoyance that could be ignored, although some days were a bit worse than others. Symptoms are almost like allergies, you can start to get used to a stuffy head from hay fever (it's still mildly annoying) but when it clears up, you really notice how much better you feel... Does that make sense?

Keep up the good work mom. Remember, you are the one who made him feel better! It's not often we get to be your kid's hero. :)

shadowicewolf Proficient

You aren't to blame for this! You had no idea!

Quite frankly, I had no idea that gluten was my issue. Took it out and wow, this is normal?

GFinDC Veteran

it definitely could be the recovery from celiac damage making him feel better. That's a good thing! :) Diagnosis in children is not easy, as their immune systems are not fully developed. But it the doctor's job to do the diagnosis anyway, not yours. That you got him going on gluten-free at such a young age is great. The average time to diagnose celiac in the USA is around 9 years. And that's with adults who can clearly tell their doctor what symptoms they are having. It's the doctors who are not doing their job, not the parents.

Roda Rising Star

Yes his improvements can very well be from his elimination of gluten.

My youngest son wasn't diagnosed until he was 5 almost 6. He did get screened after I was diagnosed (he was 3 almost 4) and was negative and didn't seem to have any symptoms at that time so he continued with a normal diet. He did have issues up until he was almost 3 with reflux and reactive airway due to reflux. He even would get hives and rashes as a baby. He was breastfed and I had to eliminate all rice, oats, dairy and tree nuts because he would react. It actually was because I inadvertantly went gluten light for almost a year that eventually, 2.5 years later, (after I went back on a normal diet)that I found out I had celiac. In hindsite I believe he had celiac as a baby. He seemed to be doing well at the time of my diagnosis and paired with his negative blood work, I figured he was in the clear. After he was diagnosed I did the whole reflecting and started putting the pieces together. When he was a baby and up until the time I was diagnosed, I didn't have a clue what celiac was. We do the best we can with the knowledge we have at the time.

Turn those tears into tears of joy that your little boy is healing and getting better. Just think where he will be in another 3 months..


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



Celiac.com Sponsor (A8-M):



megsybeth Enthusiast

I also have a four year old and haven't gotten his formal diagnosis but I believe it is coming. I just got my positive blood work today but I was tested because he was having such clear celiac symptoms and I started reading around and realized how many symptoms I've had. I just wanted to say hi because my ds is also speech delayed and has motor problems. I'm hoping that he'll be stronger and do catching up in a lot of areas once we get him on the gluten-free diet. Good luck to you!

prairiemamma Apprentice

I also have a four year old and haven't gotten his formal diagnosis but I believe it is coming. I just got my positive blood work today but I was tested because he was having such clear celiac symptoms and I started reading around and realized how many symptoms I've had. I just wanted to say hi because my ds is also speech delayed and has motor problems. I'm hoping that he'll be stronger and do catching up in a lot of areas once we get him on the gluten-free diet. Good luck to you!

Nice to 'meet' you. For as much as this is going to come out wrong so please don't take it the wrong way. It's awesome to not be the only one in my shoes. I'm sorry you are going through many the same battles we are. He hasn't been officially dx'ed either. His bloodwork was positive last Monday, but if I would of been paying attention, it is obvious. But we were too caught up with everything else going on with him. Appts, drs, therapies.

megsybeth Enthusiast

Nice to meet you too Prairiemamma. I am personally on a roller coaster. I do get sad when I think about things like the baking the family sugar cookie recipe at Christmas. But mostly I'm so happy to be able to do something to help my little boy. It's actually an amazing feeling. And I feel like with specialists I've seen about his motor delays and speech issues I'm always the one saying, "No, that's not my son" when they talk about autism, the million genetic disorders they've tested him for. Now I can say, "YES! That is my son". I'm just trying not to put too much faith in the diet fixing everything. But it's good to have hope.

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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,406
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • 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.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.