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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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    • Mari
      New here

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      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

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      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
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    • cristiana
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      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
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