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
prairiemamma
Posted

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
Invictus
Posted

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
Huggenkiss27
Posted

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
nvsmom
Posted

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
shadowicewolf
Posted

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
GFinDC
Posted

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
Roda
Posted

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
megsybeth
Posted

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
prairiemamma
Posted
  • Author

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
megsybeth
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.