Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Do Your Kids Have It, Too?

GlutenNoMore

Recommended Posts

GlutenNoMore Newbie
GlutenNoMore
Posted

I am still waiting on my results, but my doctor has already put me on a gluten free diet two weeks ago today. She's certain. Since then, I found out my sister does have celiac and now my mom and grandma are being tested. The majority of the immediate family members have 'stomach problems.'

I took my son in today to get tested, and I guess I was the 'paranoid' parent. Whatever. I'd like to know if he's gluten intolerant so he doesn't get as bad as I or my sister did. The doctor names of the 'typical' symptoms (limp, underweight, etc), and I explained to her that both my sister and I didn't have the typical symptoms. I am overweight (so is my son). She only drew blood for the one test, I forgot which one, and refused to draw for the vitamin deficiencies, as my doctor did for me.

After reading how unreliable just doing one blood test is, I am certain it's going to come back negative. Do many of you guys that are celiac/gluten intolerant have kids that are the same? I don't know how far to push it with this doctor, but, it may come down to just taking him to my doctor, a wonderful lady I found a month ago that actually listened to me. It is sad, as he has been seeing this doctor since the day he was born in the hospital, 13 years ago..

It would be easy for me to feed him gluten free and forget about all the tests, except his father won't follow it on the weekends unless there's doctor's orders.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Go to the univ of Chicago Celiac ct web site. They have Fact sheets you can print and show the doctor. They recommend every first degree relative ( bro, sis, parents & children) be tested and list the tests that need to be run.

My teen boys just tested negative. They have no symptoms.

ravenwoodglass Mentor
ravenwoodglass
Posted

Both of my children showed a low positive on tests. Both were symptomatic. If your children have symptoms be sure to try them on the diet after all testing is done as children have an even higher rate of false negatives than adults do.

kpryan Apprentice
kpryan
Posted

Did you go to a gastro for yourself? If so, you could prob bring your child to them...that's what my gastro said. It sounds like you like your doc so I would go that route or ask them for a recommendation for your child. The fact that their doc seems reluctant would make me want a 2nd opinion esp with such a family history.

Good luck!! I am getting tested (and went through a gluten challenge) mainly for my kids. I know I do better without gluten but I want to know if I have Celiac so my girls could be screened too....good luck!!!

GlutenNoMore Newbie
GlutenNoMore
Posted
  • Author

Did you go to a gastro for yourself?

I recently found a wonderful family doctor. She sat down and LISTENED to me. I originally went to get my thyroid checked, but I was having so much abdominal discomfort for a couple of weeks preceding the appointment, she concentrated on that, and tested me. I am anxious to get my test results, for that and the thyroid.

I brought a list of blood tests with me, but my son's dr was not interested. He doesn't have any MAJOR symptoms, but he's where I was at his age stomach wise... minor issues. If there is anything, I'd like to know now before it gets worse.. if that's possible.

The dr said they are testing for the one thing, but they did take 3 vials.. so I don't know if she changed her mind later. I'll go up there and get a copy of the results once they're in.

Emilushka Contributor
Emilushka
Posted

I recently found a wonderful family doctor. She sat down and LISTENED to me. I originally went to get my thyroid checked, but I was having so much abdominal discomfort for a couple of weeks preceding the appointment, she concentrated on that, and tested me. I am anxious to get my test results, for that and the thyroid.

I brought a list of blood tests with me, but my son's dr was not interested. He doesn't have any MAJOR symptoms, but he's where I was at his age stomach wise... minor issues. If there is anything, I'd like to know now before it gets worse.. if that's possible.

The dr said they are testing for the one thing, but they did take 3 vials.. so I don't know if she changed her mind later. I'll go up there and get a copy of the results once they're in.

YAY! That doc is like gold. Don't lose her. :-)

luvs2eat Collaborator
luvs2eat
Posted

I was diagnosed at about age 48. Middle daughter was diagnosed about 4-5 years later at about age 26. Youngest daughter was diagnosed about 3 years after that, also at age 26. Oldest daughter (32) was just diagnosed a few months ago after 6 mo. of aggressive chemo for breast cancer.

Youngest is having the hardest time w/ it... she also had issues going on that have been thought to be interstitial cystitis, vestibulitis, and vulvodynia. She has many, many food intolerances... she was down to about 10 foods she could tolerate, but is very slowly finding answers (a hiatal hernia and several ulcers!) and is just starting to bring some foods back.

At least they all like to cook and were very familiar w/ celiac cooking, so it's been easier for them than others, I'm sure! We were never huge convenience food people, so they've not as upset about not being able to eat fast food.

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

Celiac.com Sponsor (A8-M):


GlutenNoMore Newbie
GlutenNoMore
Posted
  • Author

YAY! That doc is like gold. Don't lose her. :-)

Unfortunately, soon as husband's deployment is over, I'm moving out of state to where he is stationed.. Already having anxiety about losing a great doctor..

GlutenNoMore Newbie
GlutenNoMore
Posted
  • Author

At least they all like to cook and were very familiar w/ celiac cooking, so it's been easier for them than others, I'm sure! We were never huge convenience food people, so they've not as upset about not being able to eat fast food.

You know, this transition has been fairly easy for me, too. Although I miss beer and have not tried the gluten free kind yet.

I rarely went out to eat in the first place, no fast food, and read the labels on everything I ate (no dairy, nothing artificial, no corn syrup or corn, soy, etc), so this is just another thing I have to watch for. Most of my meals get cooked at home from scratch, as always.

T.H. Community Regular
T.H.
Posted

My daughter tested positive after I was diagnosed, and her symptoms were exhaustion and difficulty with depression, low frustration tolerance, anxiety. I'd probably add in congestion and getting sick a lot on top of that. She was overweight as well.

My son tested negative, but he had a bloated belly, very small stature, and anger issues.

We took them both off gluten, and both of them showed improvement, so I'd say even if it tests negative, might be worth taking your little one off gluten to see if there's a change. Also, he should be tested periodically, if you don't take him off gluten, because it can trigger at any time, and a growing part of the celiac population is the asymptomatic celiacs.

And sorry that your doctor has never looked at celiac disease since he went to med school. The text books in the States were only changed a few years back to reflect the current knowledge. You may want to let him know that the previous knowledge on celiac disease - both the symptoms and the prevalence in the population - are different than there were about 5 years ago.

Not that he'll likely listen, sadly. :( Honestly, if your son tests positive? I'd still find another doctor. This one likely won't know what to keep an eye on, either.

Archived

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

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


  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748
    wmkoehler
    Newest Member
    wmkoehler
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...