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Celiac - And Small...does This Go Together?


alison h

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alison h Newbie

my daughter was diagnosed 7months ago. doctors said she would start to grow and gain weight, but it


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chrissy Collaborator

my children are on the small side.

Guest lorlyn

My 10 year old daughter was on the small side and we have been on the diet about 6 months and latley I have noticed she has gotten taller. I do not know anything about growth hormones so I can not help there. May be its the diet or she is just going thru a growth spurt. Good luck on your decision <_<

happygirl Collaborator

has your daughter had the Celiac panel re-run? I wouldnt' recommend taking further action until you have ruled out an active gluten problem. She might still not have healed, or is getting gluten....

sarah ruth Newbie

my kids are on the smaller side of average, but they're still pretty young. 'Small' and my increased inability to tolerate gluten is actually what helped me figure this all out. I noticed that of our circle of kiddo friends the ones who were similar sized to our kids ALL had grandparents who had been diagnosed celiac (except mine). That said, none of the parents or kids had been tested..

anyway, 7 months seems like time she'd need just healing from damage to her ability to absorb nourishment. Have you tried going gangbusters on the nutrition front (I use www.westonaprice.org for ideas and direction and would recommend it to any human!) before entertaining your Dr.'s ideas about hormone therapy? My kids do/act/grow markedly different when they are fed nutrient dense foods. A lot of the Weston A. Price and Nourishing Traditions research is actually about how diet affects our bodies abilities to produce hormones and balance our endocrine system. There is a great Traditional Foods forum at mothering.com full of practical applications.

sarah ruth Newbie

...hit the button too many times..

sarah ruth Newbie

oops!


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JennyC Enthusiast

My son was just diagnosed a couple of weeks ago, and he is also small for his age. He was a large baby, but after I quit breastfeeding him at 9 months, his growth rate began to rapidly decrease. Now at 3 1/2 yrs old he only weighs 31 lbs and is 37 in tall. (He's only gained 1 lb since his birthday in August.) I am desperately hoping that he goes through a major growth spurt! He's eating like crazy now, so hopefully it won't be long.

alison h Newbie
my kids are on the smaller side of average, but they're still pretty young. 'Small' and my increased inability to tolerate gluten is actually what helped me figure this all out. I noticed that of our circle of kiddo friends the ones who were similar sized to our kids ALL had grandparents who had been diagnosed celiac (except mine). That said, none of the parents or kids had been tested..

anyway, 7 months seems like time she'd need just healing from damage to her ability to absorb nourishment. Have you tried going gangbusters on the nutrition front (I use www.westonaprice.org for ideas and direction and would recommend it to any human!) before entertaining your Dr.'s ideas about hormone therapy? My kids do/act/grow markedly different when they are fed nutrient dense foods. A lot of the Weston A. Price and Nourishing Traditions research is actually about how diet affects our bodies abilities to produce hormones and balance our endocrine system. There is a great Traditional Foods forum at mothering.com full of practical applications.

alison h Newbie
my kids are on the smaller side of average, but they're still pretty young. 'Small' and my increased inability to tolerate gluten is actually what helped me figure this all out. I noticed that of our circle of kiddo friends the ones who were similar sized to our kids ALL had grandparents who had been diagnosed celiac (except mine). That said, none of the parents or kids had been tested..

anyway, 7 months seems like time she'd need just healing from damage to her ability to absorb nourishment. Have you tried going gangbusters on the nutrition front (I use www.westonaprice.org for ideas and direction and would recommend it to any human!) before entertaining your Dr.'s ideas about hormone therapy? My kids do/act/grow markedly different when they are fed nutrient dense foods. A lot of the Weston A. Price and Nourishing Traditions research is actually about how diet affects our bodies abilities to produce hormones and balance our endocrine system. There is a great Traditional Foods forum at mothering.com full of practical applications.

alison h Newbie

thank you for your tips. I live in portugal, and i am not sure any of these mail order companies deliver to europe.

i will lookat the websites you gave me. :rolleyes::rolleyes:

RiceGuy Collaborator

Well, I was very small for my age until my teens, then suddenly I shot up like a weed. Unfortunately, the gluten issue wasn't yet discovered. If it had I'm sure I would have been closer to average height. I actually had a five year period where I remained the exact same weight, and barely grew at all. Yet I always ate way more than others my age/size.

I do have a relative who got the growth hormone therapy (undiagnosed Celiac). It seems to have done nothing more than close the "growth window", permanently stunting her growth. So now she's stuck at the size of a dwarf.

Since you know the true cause of your child's short stature, I don't see any reason to mess things up with hormones. IMHO the body tends to do the right things at the right time given the proper nutrients/opportunity. Plus, seven months just doesn't seem long enough to me. If it were me I'd wait. Especially with malabsorption issues, how would the body grow if it doesn't have the nutrients? The hormones alone aren't going to do it.

How is she feeling on the gluten-free diet? As happygirl mentioned, perhaps there is still some hidden gluten in her diet. Don't overlook skin/hair care products too!

I agree with sarah ruth about the nutrients. I'd start with the common Celiac deficiencies, like magnesium, calcium, vitamin D, vitamin B12, and iron. There may be others but those are the ones I'm aware of.

Hope you get all the answers you need!

gfp Enthusiast

Unless I'm missing something why does being small matter?

Great if she starts growing but if not what would it matter...

If its indicating not being 100% gluten-free then its one thing, if there are other complications its masking another but being taller/heavier just to fit into a statistical percentile seems pointless.

taweavmo3 Enthusiast

Well, we are in a similar situation. My daughter is 5, and she is below the 2nd percentile for height. She is 38 inches tall, she is tiny. She's been gluten free for 2 years, and initially she grew quite well, but things have slowed down. We've had her blood levels checked again, and that was fine.

We are now doing a complete blood workup to check her thyroid, kidney function...the whole nine yards. I should add that she also has urinary reflux, and this may be playing a part in her slow growth. I wish the urologist would just do the surgery to fix it, but that's another topic, lol. Anyway, we are with a new pediatrician who is being very thorough in getting everything checked out. In another six months, if she hasn't had a major growth spurt, we are going to see an endocrinologist to have hormone levels checked, and then he said she'll also get a bone scan. He said if everything comes back okay, we'll just assume she's going to be small.

My brother had growth hormones, and it did actually work for him. His projected height was less than 5'0, but now he's 5'6". But, I truly believe he's an undiagnosed Celiac....he still gets very sick, but refuses to believe that's not normal, lol.

I would give the diet a bit more time before considering growth hormones really. And then get everything else checked out as well. My dd put weight on first, her growth spurt didn't come until months later. Even though she is small now, it's nothing compared to what she would have been if she wasn't dx'd. At age three, she was the size of a 12 month old baby. Good luck to you!

girlfromclare Apprentice

I dont think anyone means being small is a problem other than their concerns that their child might not be growing or gaining weight healthily. My son was two stone four pounds until he was five.... hadnt gained a pound in two and a half years... then out of the blue, after about two months on the gluten-free diet, he gained five pounds.... we were thrilled! We had never worried about him being short or skinny, but we wanted him to be healthy!!

Ursa Major Collaborator

Yesterday I came across an article that talks about vitamin D (which actually isn't a vitamin at all, but a steroid hormone precursor). And in children, a vitamin D deficiency can lead to stunted growth! Here is the link to the article: Open Original Shared Link

So, I suggest for all parents with very short kids, due to celiac disease or otherwise, to have their children's levels of vitamin D checked. It is easy to fix that with cod liver oil. I know, because my levels were very low in the fall of 2005, and are perfect now, thanks to taking cod liver oil every day.

Just getting sunshine and eating foods high in vitamin D isn't enough to bring your levels up to the acceptable range, never mind being optimal, if they're too low.

sarah ruth Newbie

there is NOTHING wrong with being small! But if our intuitions are telling us something is off with our kids then we should listen. Ursa Major, thank you for your helpful post on my question about my kids, I agree that cod liver oil is a very powerful food - my kids LOVE it in those plain gelatin capsules. My mission lately is to increase the nutrient density of the foods we eat. The Weston A. Price foundation recommends bone broths, soaked grains, animal fats and organs, and fermented foods like saurkraut, kefir and good yogurt for optimum human health. It is such a learning curve from my previous diet of humous and bagels and pasta, but it feels correct. I hate that it's taken watching my kids falter to learn this. Best wishes to us all!

mouth Enthusiast

Hi,

I don't know. I am the shortest in my family. I am negative... My daughter is 13 and looks like she is 7. All I know is that she had positive blood work since 4 and negative biopsies until 12- when she did a major weight and height gain. All I know is that since she began the diet, that growth/height spurt seems to have slowed down!!!! Visit the GI next month.. The only thing I have noticed is that her chest has spurted a little, and she has put on a belly since the start of this diet.

bchapa Newbie

I agree, if our kids are meant to be small then great, but if there is a health problem effecting my child

alison h Newbie

Thank you all for your comments...I have just had the results of my aughter's DNA tests. Doctors suspected she has hypochondroplasia - a rare genetic disorder - a kind of dwarfism. Luckily it came back negative!

So now we will concentrate on this gluten-free diet and hope she will start to grow.

By the way, do any of you know of a good web site where you can find out what common foods are gluten-free...like marshmellows, baked beans, gelatine, etc...

Thank you! :rolleyes:

UNCHeel Rookie

I hate to be the pessimist on hormones but aside from Rice guy's very intelligent and logical comments on the subject, hormones are now popping up in so many areas as being cancer inducers that unless my life depended on it I wouldn't touch them with a 10 ft pole. I'm not an MD but I saw first hand the cancer my Mom suffered and died from and now the med. folks are saying HRT has a hand in it. I would definitely try nutrition first.

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    • SamAlvi
      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
      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
      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
      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
      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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