12 Month Old With Possible Celiac

[Kindness]

Hello I am new to this board and this subject. My daughter who is 12 months old may or may not have Celiac Disease. Any ideas would be a great help. She has been constipated and is the same weight that she was a 6 months old. She would scream for hours after eating wheat products and had terrible tantrums. So my husband and I took it upon our selves to cut out wheat. We went to see the Dr. today and they took some blood work and we have to go back in three weeks. He said that the symptoms we were telling him sounded like Celiac but because she is not "under weight" and the proper height that he is not sure. Since we stopped giving her wheat products the screaming fits have pretty much stopped and she is now having bowel movements. But he is not sure why the change in diet worked; he made it sound like if it was not Celiac that it may be a wheat allergy. I am so tired and confused. What is going on with my daughter if it is not Celiac then what is it. They took blood work and we go back in three weeks and if the blood work is positive they want to give her a biopsy (spelling) I don't think I am comfortable with that at all.

Ok any ways enough ranting

Thank you

Kindness

[lovegrov]

It sounds like something's going on with wheat, but the blood tests might not prove it. If she had been off gluten for very long the tests might not be accurate. I also think I've heard that it's hard to get an accurate diagnosis on anybody younger than 18-24 months -- something to do with the antibodies in somebody that young.

If the tests come back negative but going off gluten cleared up all the problems then you'll have a choice to make.

[concernedlady]

Dear Kindness,

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:

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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.

Carol

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[plantime]

Kindness, With the change in her behavior and health just by not eating wheat, you have your answer. Many times, the tests will come back negative. It means very little. Gluten Intolerance could actually be what she has, which is usually the forerunner of Celiac. Just keep her off gluten. When she is older, explain to her what you told us. Maybe the doctor will find something, which is always helpful.

FYI: Oats and buckwheat are gluten-free. Oats are not always tolerated well, so you have to watch for reactions.

[Kindness]

Thank you all for your input and advice it is just so hard when you are trying to figure out what is wrong with a child who can not tell you. I think that you are right that even if the test come back negative that we will keep her wheat and gluten free until she is old enough to try going back on herself. I am so convinced that if the test come back negative that they will look at me like you are just making this all up and be like oh well you are just an overly concerned mother. I have had that reaction before. Thank you all you made me feel so much better about this whole thing. I would have never known that the chances of the test coming back negative and if and they do I would have just been even more frustrated. It is just so frustrating and worrying plus the doctor just said that he thought it might be Celiac and then did not tell me any thing else about it. Not even what other names wheat and Gluten can be found under. I am glad that I found this site.

Thank you all again

Kindness

[concernedlady]

In reading about what foods have gluten, and what foods don't, there seem to be several opinions (some conflicting) about what foods are safe, and what foods are not safe, for gluten intolerant people. Dr. Fine recommends avoiding ALL grains.

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?

Carol

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[dotandevan]

HI, my name is dorothy and I have an 11 month old son named Evan. As I started him on solids he would occasionally get diarrhea and I thought it was just from trying new foods. the diarrhea would always clear up once I put him back on formula and rice for a few days. then I noticed the diarrhea usually coincided with relatives visiting, when for some reason we always tended to feed him more wheat. I finally stopped giving him gluten containing foods and the diarrhea went away. I mentioned this to his doctor and she rec.gliadin IgG and IgA and tissue transglutinase antibody IgA. I took him to have his blood drawn and the phlebotomists were unsuccessful (he does have chubby arms). I just read something about needing to eat gluten for a certain period of time before test results will be diagnostic. my doctor did not mention this and how can it be healthy anyway for an 11 month old to have blowout diarrhea for a week or more?

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.

-dotandevan

[Guest Evelyn's mom]

Hi Dorthy,

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!

RaeAnn

[dotandevan]

RaeAnn,

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.

-Dorothy

[Kim]

There seems to be some confusion about what has gluten and what does not.

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.

[DLayman]

Kindness,

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!

Denise

[Kindness]

Hey guys sorry it has taken me so long to reply things have been nuts and the Dr.s have been driving me nuts. I really appreciate all the support you all have been giving me. Things have gotten better my daughter is still Gluten free. But of course her blood work came back negative for Celiac's. She had been gluten free for a couple of weeks at that point. So they gave me a referral to a GI specialist who we go see in October. We had another appointment to get my daughter weighed again today (her last appt was in May) well she has not gained any weight at all. She got taller though, she has gotten a hold of some food that had gluten in it a month ago and holy cow did she scream and was constipated. So I told the Dr.s that if it is not Celiac's then it is one hell of sensitivity to wheat and Gluten. So they said in mid September before we go and see the GI Dr. to put her back on Gluten and wheat. I looked at them like they were nuts. They want us to put her on Gluten for a whole month before we see the GI Dr. who I have been told is not even sure that he wants to do a biopsy. (Scream). Oh and to top it all off the last appt we had in May they failed to mention that my daughter was anemic. And I just found out that a very serious form of Anemia runs in my family I have even had a couple relatives die from it. I feel crazy!!!!! I am so ticked off. I know they don't believe me when I tell them that she is 100% better since I took her off Gluten and Wheat. They just don't know why she is not gaining weight. UMMM maybe if I had known she was anemic I could have taken care of that. I don't know what to do anymore. I know that I am going to keep her off Gluten until she is older. I can not handle a month knowing that my daughter will be in pain screaming, constipated and the tantrums. UGH!!!! My husband and I are thinking of taking her to a Naturopath or driving 3 hours to a very large City with a children