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

New Diagnosis


AMQmom

Recommended Posts

AMQmom Explorer

My toddler is Celiac so we had bloodwork done on my eldest (almost 7 year old) and the rest of the family. My husband and I were negative, my eldest was positive. I got the results yesterday and am keeping them from her until her biopsies (which I am going to have done since I need to know a few other things about her health like allergies and the extend of damage done). This is my question: while my youngest was severly ill and reacted to gluten, my eldest seems fine. She is anxious and can tend to be unhappy, but no feeling sick. Those sick feelings really helped us get my youngest off of gluten. Any tips for easing an elder child into a gluten free lifestyle when she doesn't feel sick eating her favorite foods???? She is such a worry-wort, I am anticipating problems here and appreciate any help that you can offer! Many thanks in advance....


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



Celiac.com Sponsor (A8-M):



dbmamaz Explorer

I think I read this somewhere in reference to getting a child on the autism spectrum on to a Gluten-free Casein-free diet - she said to take it really slowly. For example, they said to first come up with new breakfast foods that they liked, until you have breakfast totally gluten free without trouble. then work on lunch. Honestly, even if you and your husband dont have celiac, you probably want to work towards totally gluten free dinners, just to make life simpler. That way she wont ask for some of what is on your plate, and you wont be making 2 of everything. Plus you'll be more motivated to make really good gluten-free meals :lol:

The hardest part will be dealing with situations at school. But if you have her totally gluten free by the end of the summer, she might actually start seeing more of a reaction when she DOES eat gluten (even emotional reactions, possibly). That might make it easier for her to buy in to the fact that she needs to only eat the foods you give her, and not accept treats from kids at school.

Good luck

Ursa Major Collaborator

You know, being a worry wart, being anxious and unhappy........ those are VERY common celiac disease symptoms right there! Plus, maybe she is so used to low-level stomach pain that she thinks it is normal, and is therefore not telling you.

When I was her age, I had no energy at all and had to force myself to have 'fun' and to keep up with my siblings. It took a lot of energy, I was always tired and rarely smiled, and as a result I was considered sullen. I'd cry at the drop of a hat (over sensitive, according to my mother), preferred reading over running around and playing and was considered lazy. In reality I was ill, which nobody took into consideration. I was also as skinny as a stick, and my mother was told to fatten me up.......... with lots of flour, milk and sugar. Guess what that did to me!

I finally figured out the gluten connection when I was 52, and all my life got slowly sicker and sicker. Your daughter is very fortunate that her celiac disease has been discovered now.

Seriously, I imagine that she will feel SO much better without gluten, that once she knows what it feels like to be well, that she won't want to ever eat it again. I believe she is old enough to understand why she needs to eat gluten-free. To 'ease' her onto the gluten-free diet will give her a false sense of it not being that important, since she can still eat some gluten every day. Plus, it will keep her sick and from knowing how good she can feel.

I would advise you to immediately put her on the gluten-free diet after the biopsy, before getting the results. Because she should be on it, regardless of the results, because those biopsies are hit and miss, and often result in false negatives.

fedora Enthusiast

hi,

I just got my daughter tested. She just turned 7. She has the celiac mouth sores, stopped growing, and has gotten cranky and sensitive. Regardless of what her test says, I am giving the gluten free diet a chance. My daughter can't type, but it might be reassuring for them to know there is another little girl going through it too. My daughter goes to dance with a little girl who just got diagnosed with Tourette's. Her family took her off gluten(not tested ) She had a 90% improvement in her symptoms. My daughter is just cranky and sensitive, but I have been talking to her about what that feels like for her. she realizes she gets upset easily. She was never like that. We talk when she is not having a spell. I ask her questions since I know it is hard for her to put it in words. I emphasis that being off gluten could make her happier. I don't make promises, just say lets see. I explain how much happier I am off gluten. My emotional symptoms grew over the years and totally wrecked my life. I learned to live with them and function with them, but that is not good enough. I feel so much better now. It is amazing. I don't want my kids to go through that if I can prevent it. Good luck.

Worriedtodeath Enthusiast

I have to second the idea that she might not know she hurts until after going gluten free. My oldest two didn't have clue that you shouldn't have a belly ache as they were used to it. 2 weeks of gluten-free and they were amazed to have a day where they recognized they felt better. Now they know they hurt when they eat something they shouldn't and they try to stay away from it.

Stacie

AMQmom Explorer

Thank you so much for sharing with me. Your input has helped me greatly! What a lot of wisdom there is to be gained on this site - thank you, again.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,961
    • Most Online (within 30 mins)
      7,748

    Noa
    Newest Member
    Noa
    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

    • Scott Adams
      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
      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
      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
      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
×
×
  • 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.