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To Test The Family?

rat toe

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rat toe Rookie
rat toe
Posted

hi my name is becca and I was diagnosed with celiac about a year ago. I had no symptoms, but since I'm type 1 diabetic, they do regular screening and they caught my antibodies for celiac. The problem I'm having is that even though I have Celiac, my parents don't think its necesssary to test my brothers for it--no one else in our family has Celiac, and my parents act as if its just easier to not know when it comes to my brothers. My GI said it would be a good idea to test them, but the pediatritian seemed pretty uninformed and basically said "well, theres really no hurry to find out because teenagers probarbly wouldn't stick to the diet anyways, right?" I was just wondering if there were any parents out there who had a child with celiac and how (and if) you came to the conclusion to test your other children. Any advice would be greatly appreciated.

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lovegrov Collaborator
lovegrov
Posted

Don't know if this will help you, but all celiac experts and the NIH conference on celiac say that ALL first-degree relatives need to be tested. All of mine were, and my 70-year-old father with no symptoms was EXTREMELY positive.

richard

chrissy Collaborator
chrissy
Posted

after we suspected celiac in one child---i had the rest of my kids tested---we discovered that we have 3 children with celiac instead of just the one we originally suspected to have it. i would strongly recomment your parents test your brothers adn themselves for celiac every few years.

jenvan Collaborator
jenvan
Posted

Definitely have your immediate family tested...they have a 1 in 22 chance of having celiac disease b/c you do. (This stat applies to immediate family).

momothree Apprentice
momothree
Posted

Our son tested positive for celiac in May and it was recommended that our oldest daughter get tested (youngest daughter is only 2, so we will test her when the outcome is more reliable). Our daughter also tested positive, and had absolutely no classic symptoms. It's definitely a good idea. In hindsight, we can see some of the subtle symptoms that she had/has (only been gluten-free for 1.5 months) such as being tired all the time and grumpy much of the time, as well as brain fog. Of course, we are only speculating at her symptoms since most of them could also be personality issues. Another few months of going gluten-free should answer that question for us. ;)

Confused in Iowa Rookie
Confused in Iowa
Posted

Hi Becca - Just wondering how things are going with you on your type 1 diabetes. Can I ask how old you are? My son was diagnosed with juvenile diabetes at the age of 10. So far, it hasn't slowed him down at all. He's still very much active in sports, baseball, football, basketball and riding his dirt bike. Besides the few lows he gets when he is doing so much exercising, he hasn't really had any complications. I hope the same is for you.

My son was also diagnosed with Celiac's about a month ago. So we are struggling with that right now especially since he has no symptoms. Do you have symptoms of Celiac disease or did they just find yours in your yearly blood screening.

I have one other son and he is 17 years old. He hasn't been tested, but I am going to go get tested my self. I have a feeling this gene runs in my family.

rat toe Rookie
rat toe
Posted
  • Author
Hi Becca - Just wondering how things are going with you on your type 1 diabetes. Can I ask how old you are? My son was diagnosed with juvenile diabetes at the age of 10. So far, it hasn't slowed him down at all. He's still very much active in sports, baseball, football, basketball and riding his dirt bike. Besides the few lows he gets when he is doing so much exercising, he hasn't really had any complications. I hope the same is for you.

My son was also diagnosed with Celiac's about a month ago. So we are struggling with that right now especially since he has no symptoms. Do you have symptoms of Celiac disease or did they just find yours in your yearly blood screening.

I have one other son and he is 17 years old. He hasn't been tested, but I am going to go get tested my self. I have a feeling this gene runs in my family.

Hi confused in Iowa,

I'm 17 and I've had diabetes for about 2 1/2 years. Its gone incredibly well for me. I play tennis and lead a very active life. I do have the occasional lows or highs, but that is expected. Its great that your son is doing so well with his. my celiac was caught with just blood work, and then an endoscopy. I have no symptoms of celiac. I have been on the diet for almost a year now, but i see no change from how i felt before. Maybe as I get older I will begin to have syptoms, but who knows? Is your son doing ok on his new diet? I can recommend some great gluten-free foods if you would like. I know its tough sometimes, but sticking to it pays off :) good luck!

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elizmuller Newbie
elizmuller
Posted
hi my name is becca and I was diagnosed with celiac about a year ago. I had no symptoms, but since I'm type 1 diabetic, they do regular screening and they caught my antibodies for celiac. The problem I'm having is that even though I have Celiac, my parents don't think its necesssary to test my brothers for it--no one else in our family has Celiac, and my parents act as if its just easier to not know when it comes to my brothers. My GI said it would be a good idea to test them, but the pediatritian seemed pretty uninformed and basically said "well, theres really no hurry to find out because teenagers probarbly wouldn't stick to the diet anyways, right?" I was just wondering if there were any parents out there who had a child with celiac and how (and if) you came to the conclusion to test your other children. Any advice would be greatly appreciated.

This is my first reply ever to a message board! But I think this is a really important topic... My daughter was diagnosed with celiac disease last year at age 4 b/c she had quite a few obvious celiac symptoms. Just for kicks, we tested the rest of the family. To our surprise, our 3 yr old who has NO symptoms came up very positive, had the endoscopy, and definitely had intestinal damage already.

Our gastroenterologist thinks that b/c a lot of these autoimmune diseases overlap, it's possible we dodged a bullet and saved BOTH our girls from getting other things like diabetes, MS, and rheumatoid arthritis. That's just a theory that's floating around...

But regardless of what teenagers would want to eat, proven possible consequences of untreated celiac disease like anemia, osteoperosis, increased cancer risk, infertility, (and possibly increased chance of other autoimmune diseases) should be prevented if possible, and a simple bloodtest might do that for them. I'd DEFINITELY get them tested! Especially since you're asymptomatic yourself. By the way, neither of us parents have it, nor any extended family members so far! It's a mystery how our girls have it, but they certainly do and our youngest has her big sister to thank for getting it caught so quickly. Good luck convincing them!

-Elizabeth

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • 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

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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