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kirst4588

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kirst4588 Apprentice
kirst4588
Posted

I just found out that my 1 1/2 yr old has celiac - it was triggered by the noro virus and detected by bloodtest. he has done remarkable in a few weeks on the gluten-free diet (behavoir and health) and now i'm thinking the rest of us should get tested - as the more research i do, the more it seems that BOTH sides of the family (mine and my husband) probably have it - i have joined a support group; have been reading my brains off and the frusterating thing is the skeptical responses from family members. they are closedminded and old-school and are sure that my son will grow out of it or that their gi issues (thyroid, constipa :angry: tions etc) are not related - :-\ i'm so frusterated with them - i'm sure none of them will get tested and even if they did and it was positive, they'd be too lazy or ignorant to comply to the gluten-free diet

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MLO Newbie
MLO
Posted

I know exactly what you are going through as far as "family members". I have came to the "fact" that you can only do so much. My daughter was only diagnosied a month a go. So "I am no expert". I did have my 4 year old tested and she came back negative so far. My husband and I are still waiting for our results. This might seem funny, but I really don't care if my husband and I come back positive or not. I have a family that consists of many kids and I worry about their health. Of course, if I came back positive or my husband we would make changes, but I worry more about the children. I do believe in my heart that after my research on this disease that I probably have the disease or the am the carrier but try to "make your family believe". My biggest problem with Celiac Disease is that everyone thinks thats crazy. I also believe that know one whats to be LABELED as having a problem.

Good luck.

SadiesMomma Apprentice
SadiesMomma
Posted

You cant run everyones life, people at some times have to made decisions for themselves... You cant make everything perfect so dont try to. it'll just stress you out more than you need.

having a child with celiac disease is stressful, and scarey! ...and to think that others may also have it is scarey as well. All the what-ifs. Get yourself tested and get whoever tested to get tested. One of these days the celiac disease will act up and they'll wish they had and they'll get it done then and realize that they should have. But thats that. Just try to stay focused with your little baby and whoever has been diagnosed with celiac disease.

Exactly what MLO said...

No one wants to be labled
. Celiac disease is an answer that many of us have been searching for for years upon years. It may not be sprinkling us with glitter and fairy dust but at least we can get soem alswers. If your family isnt realy or prepared for that then dont push them. Odds are if theyd didnt want to get tested they wouldnt go on the gluten-free diet because they wouldnt realize the importance.

Just stick to whats already on your plate and be there for your celiac disease child.

Good luck on the testing. Hope all turns out well for you and your family!!

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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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