Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

12 Month Old With Possible Celiac
0

12 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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:

http://www.finerhealth.com

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

http://cantbreathesuspectvcd.com

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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

http://cantbreathesuspectvcd.com

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,419
    • Total Posts
      917,669
  • Topics

  • Posts

    • Formal dinner suggestions
      Hi people. I'd just like some ideas for what I can take for V to a formal family dinner. Unfortunately the restaurant has stated there is no gluten-free safe option so I have to take his meal and dessert.  I can make him gluten-free chocolate cake so thats fine.  But its a three course dinner, and I need to transport it there. Hopefully they will be happy to heat it if needed.  Something really nice and special would be good because everyone else will be eating really  nice meals.  
    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,550
    • Most Online
      1,763

    Newest Member
    Tam Tam
    Joined