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Liklihood Of Multiple Children With Celiac?

KSLMom

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KSLMom Newbie
KSLMom
Posted

Hi. This is all new to me. In a nutshell my daughter, 12, has been suffering since she was a toddler with celiac 'symptoms.' We've tried many remedies for her constant constipation, gas, bloating and pain. Finally, my S-I-L was officially diagnosed with celiac disease last year (I was under-educated at that point and neither the doc or myself considered celiac disease as a reason for her issues). Now the doctor is listening to me and is having my daughter go for a full celiac blood panel. She also wants my other children and husband tested. Is it common for siblings to all have celiac? My son is severe ADD and occasionally rashy. I've not tried a gluten free diet with him to alleviate some of his ADD symptoms. My youngest is always constipated like big sis, but with no pain or bloating. They are all in the 90th percentile size-wise, so if it is celiac, there are no growth issues. I guess I'm trying to prepare myself mentally of the prospect that they all could be positive. What is the likelihood that all 3 of my kiddos are affected (or even 2 of 3)? Does anyone else have more than one child diagnosed? Thanks! (I tried searching on this topic with no luck, feel free to post a link if this topic already exists)

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jny1179 Newbie
jny1179
Posted

Celiac is definitely genetic so if one child has it, it's very likely that the other do too. It's not 100% certain, but likely, since they all have varied symptoms. You might be surprised to find that your son with ADD does well on a gluten free diet, even if they don't find Celiac. Also, Celiac bloodwork is not always 100% accurate. Some people have spent years trying to get a diagnosis when bloodwork doesn't show a positive result. Don't go gluten free yet though, wait until the tests are done. Going gluten free begins the healing process and after a time can produce false negatives as well. Celiac is a tricky one to diagnose, and now they're beginning to realize that there's no such thing as a "typical" Celiac, the disease manifests itself outwardly in many many different ways.

I know it seems overwhelming right now but you've come to the right place. This is a great start for information and support. There are tons of people writing and talking about Celiac on the net, do a google search for gluten free blogs. Lots of great info on foods, tips about the disease, etc. Good luck with the testing and if they all come back positive, don't panic!! It's tough at first to find out you can't have all the foods you love anymore, but they will feel so much better in probably a short amount of time once they get the hang of the gluten free life.

jny1179 Newbie
jny1179
Posted

Oh, and another note. I spent most of my life constipated, gassy, uncomfortable. I also got rashes. I was diagnosed with Crohn's Disease 2 years ago via colonoscopy. I'm 29 now. I did not test positive for Celiac but after extensive research and a few trial runs, I went gluten free and it's made a HUGE difference. I feel great right now. I also avoid dairy. But that's getting into a whole other can of worms and you're already overwhelmed!

If you want, take a look at my blog, there are lots of links to other gluten free bloggers in the right sidebar as well.

www.alifeofsugarandspice.com

Jen

jny1179 Newbie
jny1179
Posted

ONE more note hahaha, sorry. I just realized that your sister-in-law would be their biological aunt, right? Duh, sorry it took so long to make the family connection. Your husband should definitely get tested and all your kids!

KSLMom Newbie
KSLMom
Posted
  • Author

ONE more note hahaha, sorry. I just realized that your sister-in-law would be their biological aunt, right? Duh, sorry it took so long to make the family connection. Your husband should definitely get tested and all your kids!

Thanks so much JNY....yes she is their aunt, my husbands sister. SIL also has graves and polycystic ovary syndrome. My oldest is having a work-up on everything auntie has. As a side note, we did go gluten free with 12 yo DD for a week. Her pain symptoms disappeared within 48 hours or so. She is eating gluten again pre-blood test. Which means delay in the result, because I'm not even bringing them for blood work until Monday. Anxious to get the results, but won't know for at least a week. Thanks again!!

taweavmo3 Enthusiast
taweavmo3
Posted

In our case, I have one daughter who was diagnosed first at age 3. I had my other two boys tested, they tested negative, but have responded well to the diet. At the time of testing, my oldest son was lactose intolerant and had Psoriasis at the age of 6. My youngest boy always had yellow, seedy stools, constant ear infections, and would just scream and moan every morning. I figured I had nothing to lose at that point, and put them on the diet too.

My youngest daughter has been gluten free from birth, but I was still eating gluten while breastfeeding. She had a horrible case of silent reflux from birth...I cut gluten and dairy out of my diet, and both she and I were much better! I get very sick with gluten now, and my anemia is corrected, so I figure they got Celiac from me. My husband also has suspicious symtpoms, and has gone on the diet as well. It's entirely probable that our kids have two Celiac parents and just didn't stand a chance : )

The genetic link is very strong...I would have all of your kids tested, then you could try the diet to see if their symptoms improve. Take small steps, the diet change has a huge learning curve, so just take one day at a time!

luvs2eat Collaborator
luvs2eat
Posted

I was diagnosed in my late 40s... the ONLY one in my family and extended family! My middle grown daughter was diagnosed about 4 years later, at 23. My youngest daughter has just been diagnosed at age 26... w/ celiac AND interstitial cystitis. I told the oldest, who had negative bloodwork when I was first diagnosed, to enjoy gluten now cause it appears celiac will show up sooner or later!

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seezee Explorer
seezee
Posted

This might be helpful?

Open Original Shared Link

It's an article from Scientific American on celiac disease and how it works.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

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      Son's legs shaking

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      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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