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Do Your Kids Have It, Too?

GlutenNoMore

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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.

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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.

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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.

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    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Testing

      By Scott Adams · Posted

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    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Testing

      By Kj44 · Posted

      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      Celiac or Addison's complications? Can someone share their experience?

      By cvz · Posted

      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
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