12 Month Old With Possible Celiac
Posted 28 April 2004 - 11:47 AM
Ok any ways enough ranting
Posted 28 April 2004 - 11:51 AM
If the tests come back negative but going off gluten cleared up all the problems then you'll have a choice to make.
Posted 28 April 2004 - 08:34 PM
You can email &/or speak by phone with Dr. Kenneth Fine, M.D. (gastroenterologist who has gluten intolerance himself, as does his daughter).
Dr. Fine started a lab called EnteroLab, that does stool sample testing, looking for the presence or absence of antibodies to gluten, in patients' stool samples. Dr. Fine could tell you whether such testing would be reliable in your daughter's case or not. Here's a link to his website:
Another thing you can consider doing, is to keep your daughter gluten-free, until she is older. If she continues to do well, being on a Gluten-free diet, you'll have your answer--stay gluten-free. (avoid glutenous foods such as anything containing wheat, rye, barley, & oats & buckwheat. Brown rice is gluten-free. Corn is also gluten-free, but some children are intolerant of corn, so it may be good to avoid corn, at this time.) If she wants to do a gluten challenge, when she is an adult, that would be an option, at that time.
Posted 29 April 2004 - 06:15 AM
FYI: Oats and buckwheat are gluten-free. Oats are not always tolerated well, so you have to watch for reactions.
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25
Posted 29 April 2004 - 06:06 PM
Thank you all again
Posted 30 April 2004 - 12:33 AM
Here's what I have read. If any of this is not correct, please let me know:
Glutenous foods include certain grains in the grass (graminae) family, and these glutenous grains include wheat, rye, barley, and triticale (a hybrid of wheat & rye).
Wheat includes spelt & kamut (ancient forms of wheat). Wheat also includes farina, wheatina, semolina, bulgur, durum, etc. Malt is glutenous, if made from barley (so avoid beer made with barley malt). "Natural flavorings" might contain gluten. "Starch" may contain gluten.
Oats are controversial. Some Celiac & Gluten Intolerance groups say to avoid oats, because of 2 main reasons:
1) Oats may have proteins in them that are somewhat similar to gluten, and this may cause problems for gluten intolerant people. (But some groups dispute this).
2) Oats can be contaminated at processing plants, with gluten from wheat, rye, barley, if these glutenous grains happen to also be processed at these plants (factories).
The following foods also seem to be somewhat controversial:
Buckwheat is not a true "grain" (it's in a different plant family from the "graminae"/grass family). But, buckwheat (also called "kasha") may have gluten-like proteins in it (I think), that can bother some gluten intolerant people.
Buckwheat can be contaminated with gluten, if processed in the same factory as wheat, rye, barley, triticale (glutenous grains).
Some Celicac groups & Gluten intolerant groups say buckwheat is OK to eat. Other groups put buckwheat into their "gray" areas of possibly "no-no" foods.
Millet is in the grass (graminae) family, and I believe, has no gluten in it. Millet is tolerated well by some gluten intolerant people, but not by others.
Tef is an Ethiopian tiny grain, that is in the grass (graminae) family. I don't know if Tef is glutenous or not.
Sorgum/Sorghum is also in the grass (graminae) family. I don't know if it has any gluten in it or not. Special Elisa (?) testing to see if it is glutenous, appears to not be sensitive enough to detect possibly very low levels of gluten.
Quinoa and Amaranth are seeds that may or may not bother gluten intolerant people.
Wild Rice (grown in lakes in Minnesota, etc.) is in the grass (graminae) family, and I think Wild Rice is gluten-free. Is Wild Rice gluten-free?
RICE IS GLUTEN-FREE, and is tolerated well by most gluten intolerant people, unless one is "allergic" to rice. Brown rice is more nutritious than white (denatured) rice. Brown rice can be used to make breads, cookies, crackers, cakes, pastas, cereal, gravies, etc.
Corn is also gluten-free, and is tolerated well by some gluten intolerant people. But, some people are intolerant to corn, and should avoid corn. This includes corn syrup, found in some baby formulas!
And, if all this is not confusing enough, people can be intolerant of other foods, like SOY, and COW'S MILK!
It may be easiest (and safest) to either avoid all grains, or, just use brown rice. What do you all think?
Posted 14 May 2004 - 08:41 AM
I would like any opinions on these tests and also any advice on dealing with friends/relatives who still give him wheat when I specifically ask them not to. Any advice will be greatly appreciated.
Posted 14 May 2004 - 04:49 PM
When my daughter, Evelyn, was just being tested I remember them getting blood from her foot because they too were unsuccessful with her veins. Her blood tests were inconclusive (more common with young celiacs). The veins integrity is severly diminished by the effects of celiac (malnutrition). Even if Even is chubby in some places, that doesn't mean that he's absorbing all he needs to to be healthy. I would recommend you look into Enterolab. It is much less invasive than the traditional blood test/biopsy. Since he responds to the gluten free diet, it seems you have your answer. I'm not sure about whether or not you need gluten in the diet for the Enterolab tests, someone else on the board might be able to help with that.
As for your friends and relatives....I started explaining to ours that eating gluten for Evelyn gives her "food poisoning", imagine living with food poisoning every day of your life. This was the only way I could bring home the point that feeding her gluten was hurting her. Get as much information as you can and share it with them. If they won't read it or take an interest in it, don't let them feed him! A lot of times they just don't think. I remember my mother-in-law putting away our left over gluten-free hamburgers into a used and unclean wheat bread bag...ugh!
The best thing you can do is educate yourself and take complete control over his diet.
I have learned now that it has been a blessing for Evelyn to be diagnosed so young, she doesn't have a taste for gluten and has no problems not eating it when her friends and siblings are.
Hope that helps!
Posted 16 May 2004 - 07:22 AM
Thanks for the advice on communicating with relatives. I am thankful it only took me a few months to figure out that gluten was giving him problems. And all that junk food and processed food he won't be eating! maybe it's a blessing in disguise and we should all go gluten free.
Posted 16 May 2004 - 07:40 AM
Buckwheat, despite it's unfortunate name, is not related to wheat and has no gluten. It is related to rhubarb and is absolutely fine for a gluten free diet.
Millet, Tef, Sorghum (Jowar), Quinoa, Amaranth, and Wild Rice are all Gluten Free.
Brown Rice (and all rice) is gluten free.
Soy is gluten free. On a separate note, soy is one of the top 9 allergens so some people cannot tolerate soy, but this is unrelated to gluten or celiac.
Corn is gluten free. If a celiac has a problem with corn, that is separate and unrelated to celiac or gluten -- perhaps an allergy.
The only questionable is oats, which are still not recommended in America or Canada for gluten intolerant people, for the reasons listed by Carol. Because of cross-contamination issues, specifically in the fields and processing plants, American oats very often do contain gluten.
Posted 17 May 2004 - 02:46 PM
Don't worry if they look at you like you are crazy! They do not live with this child 24/7 YOU do.
YOU know your child!!!! There is no one on earth who knows her better. YOU are the expert on your child and don't let anyone tell you different.
I can sympathise with you! It is very hard to try to weigh out other's opinions and get to the root of what is wrong with your child. You know something is not right and others who don't know your child as well as you can not truely understand that.
I am struggling as well with getting doctors to listen and truely understand that something is not right with my two year old.. It''s been nearly a year now.
So keep at it.
At the point you get the tests back you may need to make a choice. It sounds like you have made that choice already to keep your daughter off gluten. Stick to it if that is your decision. Don't let anyone disuade you from that position.
I wish you well!
Posted 12 August 2004 - 04:10 PM
Is anyone else gone off Gluten and wheat and still not gained weight? Could the anemia be causing her not to gain weight? I just want to know what is going on!!!!
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