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joalabbs Newbie
joalabbs
Posted

Hello, My name is Stephanie and two of my three children were just diagnosed with celiac disease. I am so confused and upset. I dont know where to begin with all of the information that I have. I am afraid to feed them for fear that I will be giving them something that will make them sick. I will gladly take any suggestions that anyone has. My son is nine and he was diagnosed the day before thanksgiving. His doctor recommended that the other two be tested. They were tested on Dec. 26. My daughter's blood test came back postitive and she sees the the GI specialist on the 29th. I am very confused. HELP :(

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Guest jhmom
Guest jhmom
Posted

Welcome to the board Stephanie. I understand your concern of feeding your children something wrong but I'm sure you will do fine. :)

Until you become confortable with the disease and how to feed your children you could always stick to simple things like: meat, veggies and fruit, although depending on their GI symptoms I would not give them too many.

Some suggestions I have for you is to read everything you can about Celiac Disease, search for gluten free food (in the stores or online) and read every label before serving it to your children (to check for hidden gluten). On this site there is a Safe Food List and a Beware of list. I hope this helps :) This is a wonderful support group so don't be afraid to ask questions, that's what we are all here for.

Here are some links that have helped me since my diagnosis last Sept

Open Original Shared Link

www.kinnikinnick.com

Open Original Shared Link - has a nice gluten-free food list

These are only a few, but it's a good start.

granny Rookie
granny
Posted
Hello, My name is Stephanie and two of my three children were just diagnosed with celiac disease. I am so confused and upset. I dont know where to begin with all of the information that I have. I am afraid to feed them for fear that I will be giving them something that will make them sick. I will gladly take any suggestions that anyone has. My son is nine and he was diagnosed the day before thanksgiving. His doctor recommended that the other two be tested. They were tested on Dec. 26. My daughter's blood test came back postitive and she sees the the GI specialist on the 29th. I am very confused. HELP :(

Stephanie,

Welcome to the board and know there is a lot of great info here. I agree with Stacie, the sites she listed are great. I made copies of the safe and forbidden foods and carry mine right into the grocery store and check everything!

I was thrilled to find Open Original Shared Link because it contains so much by brand name and that helped me since we don't have health food stores here.

I mean there are 9 pages of candy we can have!!! This thrilled my granddaughters! I can still eat candy with them! Granny

DLayman Apprentice
DLayman
Posted

The absolute best books you can get are: Kids with Celiac Disease by Danna Korn and Wheat free Worry Free by Danna Korn as well. These should be carried by any local borders books, I reccomend buying them..

Some websites that go along with these..

Open Original Shared Link

Open Original Shared Link

And there is a Celiackids group on Yahoo as well.

I have also read Breaking the Vicious Cycle by Elaine Gotshall This you should be able to get through the library you might want to read it first before buying..

Some sites to look at with this..

www.Pecanbread.com there is also a yahoo group by this name

www.Breakingtheviciouscycle.info this has a few chapters of the book online, including the one on celiac.. but I reccomend getting and reading the whole book it really aids in the understanding of the chapters.

www.scdrecipe.com

Also another book is Incredible Edible Gluten-Free Food for Kids

150 Family-Tested Recipes

By Sheri L. Sanderson

I HIGHLY reccomend that you go out and get the Kids with celiac disease book TODAY!! It deals with alot of what you are feeling right now! It will help you calm down and focus on the task at hand which is getting your kids on a good diet that will help them.

And any questions no matter how silly you think they are come here and ask them!

Denise

seeking-wholeness Explorer
seeking-wholeness
Posted

Hi, Stephanie!

I second Denise's recommendation to read Kids with Celiac Disease; it will be a big help to you! Another list of gluten-free foods that you should be able to find at a regular grocery store is Open Original Shared Link.

You must be quivering with stress and worry right now! A diagnosis of celiac disease means a major lifestyle change, and when it affects our children we have an understandable tendency to blame ourselves for every "accident" they suffer. Remember that the gluten-free diet takes AT LEAST a year to master! Your children will have accidents, both at home and away--but that doesn't make you a bad parent! The journey of a thousand miles begins with a single step, which you are taking. Congratulations!

  • 2 years later...
vampella Contributor
vampella
Posted

I have to agree with everyone on the books, they are great. Also this site is AMAZING!! the people here are so great and helpful...kindest people I've meet online.

I am also new to this...1 month into it my daughter is almost 4. My advice is to sit back and take a few slow deep breaths. EVERYTHING will work out fine.

It's not as scary as it seems. your kids can get healthy and happy again. I already know you will do great, you asked for advice, that's the first step, the second is to be confident in yourself as a mother. you will learn and it's not that hard.

Read everything you can. If there is a gluten free store near you, go there and ask advice. we only have one store here but it's run by a man who has celiac and we went in there knowing a lot about celiac but came out knowing ALOT about how to feed Emmah. He was great.

Also the food is a lot more pricey but YOU CAN CLAIM IT ON YOUR INCOME TAX.

Good luck and don't be afraid to ask questions, I do all the time LOL

Char

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      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      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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